Life on the Exceptional Side

It's the Great Pumpkin!

2011-10-11T17:41:00.000-07:00

Happy October!

Great pumpkin, huh? We met family for lunch in Nelson at the Nelson Cheese Factory and then went on to Wabasha to look at all the decorations. The carve immense pumpkins and have stuffed life-sized scarecrows all over town. If you go, check out the large green caterpillar made out of pumpkins. It's so creative.

Ryan and I are finally settling into a fall routine. The weather is still GOJUS so we've been outside and running constantly. There's enough time to blog when the weather is crappy. Know this ... if the weather here is good, I'm probably not blogging.

I have my press shot tomorrow and naturally I have a spot on my face! ERG! The gnats are dining on my face, neck and arms. My legs are usually moving so that's not an issue ;-) I'm hoping that my pictures turn out. I take pretty crappy ones most of the time. Many have tried ... and failed ... to take my photo.

My column this time is on executive function. I'm always looking for future topics so if you've got ideas just let me know. I've written the column for over twelve years and have never rerun any of them so I appreciate the input.

Ryan did his mascot gig at the game reserve and insisted on an autumn photo. The same little girl who stuck to him at the French Toast Breakfast fundraiser glommed onto him at Booya too. She hugs him for ten minutes at a time. I once tried to help him out by gently reminding her that other children would like a chance to say hi to Paddy but she wasn't deterred. She walked about five yards away, tapped her little foot a grand total of six times, smirked at me and said, "No one else is there." She wrapped her arms back around Paddy and didn't let go. It's hard for Ryan to see so that he can move under the best of circumstances but with a child directly underfoot it's nearly impossible. Fortunately, she didn't arrive until the last half hour of the festival so many other kids got their photo taken and shook hands with the Beav.

It was about 80 degrees so the suit got warm. It's made out of rug material. About every half hour I grabbed an icy pop and Paddy went into the woods to remove his head and slam it. Ry worries a lot about freaking little guys out by suddenly removing his head.

We need to start fundraising for a more suitable costume, perhaps with a fan in the head and vented bottom. The drawback is that most mascot Beavers are comical or angry looking. If you go for your own design you pay for it big time. If anyone knows of a great mascot company let me know. I've been looking at one in Milwaukee but haven't decided on anything yet.

Well, I've droned on long enough. I'll try to blog more frequently although lately I've been remiss. Hoping that you are enjoying this balmy weather as much as I am!
Much love and joy,

Karen

Best Buddy Golf Outing

2011-05-02T10:24:00.000-07:00

The Best Buddy Golf Outing on Saturday went well, considering it rained cats and dogs right up to t-time and then started again right after the nine holes. Ryan's team came in second. They missed first by one stroke.

If you have baskets to donate next year for the silent auction please let me know. They need some that aren't food items.

Ryan was so disorganized on Saturday. He was excited and his normal checklist of what to do before leaving the house left his head. The golf course is a good half hour away so turning around involved time. He thought he forgot his cell phone and inhaler. We turned around. He found them in his pocket. We turned around again. He wanted a hoody to protect his hearing aids in case of rain. We turned around. He decided his hat would do. We turned around again. About 2/3 of the way there his buddy called to see if we were on our way. Yep, just late.

It was a wonderful outing and they all had a great time. It was fab that the rain stopped during the tournament. Famous Dave's catered again and Culver's donated various flavors of custard. Texas Roadhouse donated bags of peanuts, which nearly killed me since I'm dieting and can't have them.

Remember, if you loved one has a buddy already we are planting enabled beds this summer. Contact me for more information if you're interested.
Have a great week!
Much love and joy,
Karen

Who do you admire?

2011-04-26T14:18:00.000-07:00

Ryan and his cousin, Chris, love to hang out together. Unfortunately, Chris lives on the other side of the state and, like every other 20-something adult, is crazy busy. Ryan can't wait to see him when he comes and looks up to him. Chris is a remarkable young man and I'm glad that Ryan has someone like that to admire.

It's funny how we all need mentors, those people who inspire us and motivate us to be the people we want to be. My grandmother was so kind. It was her compassionate and kind nature that stood out above all else. I admired her and continue to emulate her whenever I can.

There are certain others I admire: Billy Graham (but then, that's like saying I admire Moses, right?) I admire all the usual suspects like Eleanor Roosevelt, Helen Keller and Rosa Parks. But I also admire some people who are not mainstream like Britney Spears, who since she was a preteen, has been under a grueling microscope. The strobing of flashbulbs alone could send a person funny. She continues to get up again and again, still swinging.

I admire brave writers who declare their heart and dare people to judge them. I admire Allison Krause, who for years has sung backup and harmony melodies in a way that is simply ethereal. She is coming into her own but no one excels more than she at pulling a single silver thread of harmony in a song until it unravels in an amazing blend of sound.

I admire Jesse Ventura. You heard me. The man spoke his heart and let the chips fall where they may. If people wanted to pick at the syntax and politically correct measure of his sentences, let them. He had convictions and stuck by them. He then left politics because his wife couldn't stand people coming at him that way. Now THAT'S a man!

I admire Conan O'Brien for being a class act when the network gave him the shaft for Jay Leno. We all knew it was wrong. Same way they shafted Dave Letterman for Leno. BTW, who is Leno connected to??

I admire Madeline Albright who broke the glass ceiling for women in so many ways.

I admire Steve Jobs who, despite great illness, continues to evolve and create like nothing we've ever seen.

I admire Bill Gates and Warren Buffet who give away most of their money simply because they can.

I admire hospice workers for sitting at bedsides so caregivers can get some much needed rest.

I admire doctors who actually listen without worrying about covering their butts.

I admire Christopher, who is a paramedic, and much see some horrible things but continues to care and treat people with compassion.

I admire my son who, despite his disabilities, gets up each morning with a smile and a "can-do" attitude.

Well, you get the idea. Who do you admire? Perhaps if we don't admire anyone we spend too much time in our heads. What do you think?

Have a great week. Remember, I'm praying for you...

Much love and joy,

Karen

spring and health

2011-04-05T07:26:00.000-07:00

Ryan and I are getting the itch to garden again. It's so hard when the yard is covered with snow! ERG!

We've decided to grow some odd crops (for us) this year. We've never planted corn because of space. It's just not feasible. However, Ryan wants corn in one of his raised beds. I told him we'd need a step ladder to pick it! (Actually we can bend it down at harvest I guess.)

We're going to grow some fall root crops like potatoes, carrots, and onions. We've always stuck to the salad crops but this year we're branching out a little.

We both need to get outside more. During the thaw it's so messy and slimy out there. Finally the roads are dry and the sidewalks are getting there for the most part. Then we can walk.

How do you make sure that your loved one with special needs gets enough exercise to stay heart healthy? Do you swim, walk, play ball? It's hard enough to find time for our own exercise to say nothing of making sure those around us are moving and grooving!

Today make a promise. One day this week do something that improves your health and the health of your family.
Good luck
Much love and joy,
Karen

Good bye Cake! We're dieting!

2011-03-28T09:54:00.000-07:00

Ryan and I are dieting and beginning a new way of eating. That's why you see the cake ... birthdays are NOT going to be a reason to pig out!

In this part of the world where winter can be so long (7 degrees this morning and I still have five foot snowbanks at the end of my drive, cannot see grass yet and have a good 12-18 inches on the ground) we tend to socialize by eating. We call it fellowship, going out to dinner and it has become affordable, yet toxic, recreation.

Friends in town? Have a big meal. Holiday? What shall we have to eat? Superbowl party? Mounds of food and drink. Nothing to do on a snowy winter Friday evening? Let's go out for fish fry and see friends. The list goes on and on. Weekends arrive and it's a license to munch all day long.

After this past year with my surgery and two hospitalizations and Ryan's surgery, which were all complicated by obesity, I decided to put a stop to it and get serious. Make no mistake. It's hard!

What amazes me ... no, HUMBLES me, is that Ryan, without a grumble, has put his entire eating into my hands. Some would say, "He probably wants to be thinnner" but that's not really true. First, he can't remember what it feels like to be thin. Secondly, he doesn't compare himself to other people for body type so he doesn't really realize how heavy he was getting. Thirdly, he doesn't understand the health issues so can't lose weight "for his health" and finally, he loves to eat. (Yeah, he's definitely my kid!) When the doctor asked him if he wanted to lose weight, Ryan shrugged.

However, he DOES realize that it's important to me and since we're working on it together he seems okay with it. Actually, he's unbelievably graceful about it. For someone to put that kind of trust in me, humbles me. I've instituted weekly rewards (non-food) for sticking to the diet and in 8 weeks he's lost 32 pounds! (I'm not doing THAT well ;-) He hasn't deviated once! Neither have I but he's 21 and male ... need I say more, ladies?

At any rate, this is our good bye to cake and the shortening that makes up frosting. You know? I've never really loved cake anyway. Unless I LOVE something I'm not eating it ever again! There aren't enough calories allowed to me to eat foods that I don't relish and enjoy eating.

At any rate ... shout out to Ryan. My go-get-em guy!
Have a great week. If you're dieting, know that you're not alone!
Much love and joy,
Karen

Flip Sides of the Same Coin

2011-03-16T16:23:00.000-07:00

Hi everyone,

I was all set to post a snowy pic, then I decided that we needed to broaden our scope to include something ... more.

This photo was taken when whale watching out of Bellingham WA, we were visiting my brother out in the area. Love Bellingham but Mt. Baker freaks me out a little. I've watched too many Nat Geo programs I guess.

Besides when you have a child with disabilities it seems like everything you took for granted in your "Once Upon a Time..." life is a little less "Happily Ever After." Catastrophes can, and do, happen. We all know in our minds that bad things happen but in our hearts, for the first time, we realize that they don't just happen to other people. Bad things can happen to us, to our kids. Strangely enough, it seems that we experience bigger joy than we've ever felt before.

A friend of mine recently came back from Africa and was struck by the positive attitude and happiness that was shown by people living in abject poverty. I've come to the conclusion that joy and despair are flip sides of the same coin. You can't have one without the other. You can only know true joy if you have experienced pure despair. One thing I've learned is that joy is in the little things. The first time my son buttered a slice of bread. The first time he tied his shoes ... things his doctors once said he'd never do.

Today I thank God for this amazing child. I thank him for sending me a life peppered with moments of crystalline joy.

God bless,
Much love and joy,

Karen

Children of Light by Karen J. Olson --- My book has been released!

2011-03-05T07:28:00.000-08:00

Yippee! My book is finally out! I apologize that I haven't been posting as regularly as I was. My bad. I was so busy with work that I couldn't get to it. No excuse ... just that season of my life, I guess.

If you read my column, Life on the Exceptional Side, or like my Chicken Soup for the Soul stories you'll love this book too! It's a labor of love.

Here's an excerpt:

Chapter 2
A Child of Light

You may not have experienced the NICU and the roller coaster we were on, but if you have a child with special needs, you've been at the amusement park. We all hang on to the sides of our seats when our child's life, or happiness, hangs in the balance. We can't help but ask "Why?" "Why is this happening to me? What did I do wrong to deserve this?"

If you're interested in seeing more, or ordering a copy, please go to the publisher's website at http://www.casparapublishing.com/ and click on "store" to order a copy ... or two. ;-)

Much love and joy,

Karen

The Cost of Helping

2011-02-14T06:41:00.000-08:00

What makes us laugh at someone elses pain or misfortune? Why is it that we, as humans, think that it's okay to do that? I've seen people laugh hysterically, or at minimum say something along the lines of "I think that's funny" when something bad happens to someone.

For example, I worked for fifteen years at a job I hated. The people there were "pretend" Christians. In order words they said they were Christians, but their actions spoke louder; they were not. During that time Ryan and I had a series of crises. Each day I went to work my supervisor laughed at them. So did the other supervisors. For them, my struggling was a sit-com for them to chat about over the water cooler. The sheer volume of challenges that I was presented with at that time was unbelievable. They couldn't find generosity in their hearts so they laughed. And it hurt.

What makes it okay to do this to someone? Is it part of a sick twisted human nature that we take out our inadequacies on those who are less fortunate? I've seen the same skewed laughter with our kids who have special needs and it makes me sick to my stomach. I've seen kids talk about how someone in a wheelchair has changed their life, then turn around and make the kid with Down Syndrome feel like they're scum. So how did the person in the wheelchair change their lives? He didn't. He just elicited a politically correct response in the kid, or adult for that matter. At what point do you really make a difference, really engage and give of your heart? Anytime you do that it WILL cost you something. It's the way it works.

The next time you see someone who is struggling, help them. If you see a single parent having a hard time ... help them. If you see someone who is challenged ... help them! Help them until you feel that it cost you something.

God bless you today and every day.
Much love and joy,
Karen

Graduation

2011-02-02T08:48:00.000-08:00

Ryan and I are trying a new diet plan. So far we're doing okay. It's not easy but he's been amazing! We're both tired but that will pass. The biggest change is all the vitamins and supplements, but we're following doctor's orders so it'll be fine, right?

I hope the day finds you well. Ryan is with grandma while I work this morning. I have a mad urge to go out and play in the rare sunshine (sunny yesterday too) but it's a wee bit chilly (-25 degrees windchill earlier!) Overall though, it's a pretty day. One that makes me want to snowshoe or something outside.

I'm thinking about graduation party details for Ryan. Do I have it catered? Or do I make sandwiches? Do we grill? I don't want people to be trapped in the kitchen so caterers sound attractive. Famous Dave's does an amazing job but I'm not sure I want to go that route. What did you do for entertainment? Did you have a band? DJ Music? Birds? Outside or in? Home or somewhere else?

Our family is so spread out I'm not sure how many will make it. At any rate, if you have ideas I'm open to suggestions.....
Thanks
Much love and joy,
Karen

He's Twenty One!

2011-01-24T06:33:00.000-08:00

My son turned twenty one this week and naturally I'm writing about it. He chose a large cookie here instead of a cake. Gotta have those puffed out cheek shots, right?

Twenty one years ago the doctors said he wouldn't live a year. They said he'd never walk, never talk and never even know my name. "Take him home and love him," they said. I refused to believe them.

Ryan bears wounds from his struggle to live. It's just the way it is. At least he lives. Not only does he live, he has a full life with his job, his activities and his hobbies. Each year I send a Christmas card to the large metro hospital NICU with a picture or two of Ryan. I want them to know that what they did made a difference. This young man lived longer than a year. He walks, he talks, he knows my name. I love him and he loves me. This last twenty one years, while not easy, have been the best of my life because of the grace he has brought to it.

Even if he wouldn't have walked, talked or known me ... I still would have loved him as ferociously as I do now and even if he wouldn't have been able to say it, he would have loved me too ... even if he didn't know my name he would've known me as a feeling in his heart.

God bless all those babies and parents hearing sad news today. May they live in the special light that is grace.

Happy Birthday Ryan! I love you! Mom
Much love and joy to everyone,
Karen

Want to read about Ryan's birth? Get Children of Light at www.casparapublishing.com

Want to read about how a life lesson went horribly awry? Check out Karen's column Life on the Exceptional Side in Family Times in stores February 5.

A Deep Sea Fishing Journey

2011-01-10T16:27:00.000-08:00

Hey everyone,

Here's a picture of me deep sea fishing BC (before child). Sometimes I miss all the fun vacations and experiences but I have to admit that my life is much fuller now. While challenges always keep me on my toes, I believe that the joys have far outweighed them.

I have met some of the most incredible people that I'll ever meet. I've experienced humility, grace and faith in a deep and abiding way. I've faced my own mortality as well as Ryan's. It's been a fishing trip on rough seas some days ... doldrums on others ... and sunny gorgeous days in between.

My son turns 21 next week. They told me he wouldn't live to see a year. I'm touched that God has deemed me worthy enough to parent this exceptional child. I never would have known my own strength and depth of character without this particular journey.

God bless you and yours as you travel this road with me. Remember, you're not alone. I'm out here too!
Much love and joy,

Karen

Adulthood and 21st Birthdays

2011-01-04T06:24:00.000-08:00

Hello,

Just peeking in to see how you're doing. The holidays here were okay. Quiet, which in some ways is a good thing for Ryan. How did your child with special needs do during the crazy holiday time?

I received some very nice mail from people regarding the book chapter I put in my column. Thank you for that. I so truly appreciate knowing that I'm reaching people.

Ryan turns 21 this month. Where did the time go? Adulthood, however, has been a much better place to be for Ryan. I mentioned it to a friend of mine, Donna, once and she said the same thing, that adulthood tends to be a better time for our children.

I'm not saying that you should wish away your baby's childhood. I so miss holding and rocking Ryan when he's sick or had surgery. But don't think that adulthood gets harder because I've found more official and unofficial support for us with Ryan as an adult. You know your child so well by then that you are able to better find rewarding experiences for them.

Adulthood brings jobs, volunteer opportunities and some degree of autonomy in choosing what they like to do. That's so important.

For Ryan's 21st birthday we are heading to a casino. He wants to see what all the hubbub is about. His uncle works installing security systems in casinos and military bases so Ryan has always wanted to see where Gary works. (He puts in security systems all over the place .... he met his wife in Venezuela). So off we'll go. He'll get tired of pushing buttons fast. Because he doesn't really have an understanding of money, he's not going to anticipate winning it. Otherwise I wouldn't take him. We thought there might be a show going on (hoping for a clean comedian or some type of music) and perhaps we could help him with Bingo. At any rate, he's more concerned with looking around and staying in a hotel for a night.

What did you do with your young adult when they turned 21? Did you plan a family gathering? A birthday party?

Have a great week. Much love and joy,

Karen

a word on copyright

2010-12-27T07:18:00.001-08:00

If you are lifting these posts and claiming them as your own, you are in violation of copyright and can be prosecuted to the full extent of the law. Please stop now.

Happy New Year!

2010-12-27T07:16:00.000-08:00

I just had to post another pic of Ryan at his VSA concert. He's enjoying himself sooo much. That's the bottom line with this choir. The current director is Jen Martin Davis. When she directs the members of the choir enjoy themselves immensely.

Ryan has a number of people in his life that he enjoys and I thank God for that.

I hope to be better at blogging weekly. Hang in there with me, it's a very busy season for me.
Have a Happy New Year ... Go Badgers!
Much love and joy,
Karen

Just another family member...

2010-12-10T06:46:00.000-08:00

Good morning everyone,

This is Ryan's dog, Poppie yo yo neck. She's eleven years old. You can see the gray hair in her eyebrows ... do dogs have eyebrows? lol.

Yesterday she went to the groomer for a spa day ... ha ha ... read that a bath and haircut. She can't see as well as she used to and when we came back she missed her footing in the garage, jumping down from the SUV and fell to the cement floor. If she's not still in shock, I am. Poor old girl. She seems okay but was shaken up for a while. Ryan was too. He worries about her anyway.

Dang dog! They worm their way into your affections and then, there you are! One more family member to worry about. Sheesh! I think she's sore this morning because she looks a little ratty here. She normally stands up with the camera is around and preens, smiles etc.

She's not the only one. I'm feeling ratty too. Woke with a stomach bug and am hoping it will wane as the day waxes on. It doesn't stop me from working, however, one of the drawbacks of being self employed. There is no one else to do anything so you power through unless you're literally sleeping on the b'room floor. Hopefully it won't come to that.
Take care, dear friends.
Much love and joy,
Karen

Remember to preorder your copy of "Children of Light" my new book coming out this month.

Holiday Disruptions

2010-12-06T08:01:00.000-08:00

Hello everyone,

Isn't this painting pretty? My great great aunt Sara painted altar paintings in the 1800s. She did over 800. This is Peter and the Christ. You can tell it was at the altar when you look at the edges and see the decorative wooden scroll work that served as a frame. I thought it was appropriate to share it during the holiday season.

Ryan is handing the disruption of our holiday well. The kitchen is done except for a little bit of sanding and painting that may get done next week. Ryan, however, is allergic to dust so we're going to have to contain any mess.

I'm probably more stressed out. The tree usually goes up after thanksgiving and I can't put it up and have it coated in dust, it's impossible to clean! This may be the year without a tree if this doesn't get done soon! Then I will be the one having a melt down. Honestly, Ryan never really did have much for melt downs so it's incorrect to infer that he did. My bad. He's always been an even tempered kid. He does have things that freak him out a little but we're working on the panic episodes.

I hope that your Christmas preparations are going well. Prayers that you are de-stressing once in a while.
God bless,
Much Love and Joy,
Karen

Adulthood is Ryan's Time

2010-11-26T06:43:00.000-08:00

Good morning everyone,

Ryan's Very Special Arts choir concert went well last Sunday. Here he is in his role as sign person. My camera took some pretty blurry shots. I have autofocus and I think something is wrong with it. Nuts!

The concert was lovely. The participants all looked happy and thrilled to be there. The audience was attentive and appreciative.

Directly afterwards Ryan had a Thanksgiving Feast with Best Buddies. The college buddies provided everything and did an amazing job. All in all a very busy day with church in the morning as well.

Adulthood has really been Ryan's time to shine. When our kids are children it's all about compliance. When they're adults the beauty of their uniqueness shines. They are able to choose what they want to do and their natural abilities emerge, in spite of their disabilities.

If you have a child with special needs and you are frustrated, don't despair. While I don't want you to wish away your special someone's childhood, just know that better days may be coming.

God bless you and yours,
Much love and joy,
Karen

Happy Thanksgiving!

2010-11-18T10:52:00.000-08:00

Hello everyone,

Each Thanksgiving is a little more poignant than the last. I remember the doctors telling me that Ryan might not ever walk, ever talk, or ever know me.

Each Thanksgiving is a heartfelt thanks that Ryan does know me. I think all our kids do, no matter what kind of limitations they have on their earthly bodies, their hearts are true. They know and love us. We see it. We know we see it, even if they never walk, never talk, or seem like they don't know us. They do. That's all their is to it. They know us, love us and each time we walk into a room, their heart thanks us. Just like our heart thanks them for entering into our lives. When we are with them, it's all okay.

God bless your day and have a great Thanksgiving feast next week.

Much love and joy,

Karen

Give me antibiotics!

2010-11-13T17:02:00.000-08:00

Hello everyone,

I've missed blogging but my weeks have been slipping by without a chance to talk with you. Not only is work nuts but it seems like most falls, chaotic.

Well, here's the mess in the house. I'm redoing the kitchen. Actually, I'm not doing it. I have a carpenter/painter named Kevin who did the bathroom. The floor is done, it's Duro-ceramic and I love it. It looks like terrazzo. I'll keep you posted with pics if you're interested. If not, just slide on by.

My house is about 50 years old so the kitchen is small. It's an eat-in kitchen but there's not a ton of space. The whole level is only about 1000 square feet. Big enough for Ryan, me and the dog, right?

Ryan loves the entire process which really surprises me. I thought the disarray would derail him but he's chugging along nicely. I'm the one tearing my hair out. Kevin is amazing about keeping the kitchen functional while he works but just having the cupboard doors off drives me a little bonkers. Everything looks so messy. A couple more weeks at the most and it'll be done. My countertop comes in next week.

Ryan's natural curiosity overrides his aversion to disorder when we take on a project like this and he's got his little nose in every step of the project. I'm glad though. What a nightmare if he didn't. He spends a lot of time in his room, however, perhaps a way of coping.

Ryan's cough is still hanging on. He got soooo sick about two weeks ago and is still suffering from a lingering bronchitis. I guess I'll have to take him in this week if it doesn't break up more. I'm a little concerned about it. His coughs sometimes don't resolve without antibiotics. URIs have been a part of his life since he was born. Sometimes I really have to fight to get them and that ticks me off. Healthy kids recover in a couple of weeks but a child with disabilities and upper respiratory infections his entire life is not really where a doctor should make a point. Sheesh. Give me a break dude. I've given it plenty of time to resolve. On Tuesday it will be THREE weeks and we're heading in. I think too many people take their kids in during that first week so doctors put them off. We're not like that and I would hope that over the years, that would become obvious.

Wish me luck friends. It's life on the exceptional side, am I right?
Take care!
Much love and joy,
Karen

ps. Check my website at www.casparapublishing.com to see when Children of Light is out. It should be sometime in December.

Our Puppy Poppie is Feeling Poorly.

2010-11-03T19:38:00.000-07:00

Poppie is not feeling well tonight and we're so sad. For a while she was shaking so hard I thought she was having seizures. Our last dog, Ginger, had seizures before she died and I couldn't help but think of that.

We get so attached to our pets, don't we?

I finally got three baby aspirin down her by putting them in Lil Smokies. I think that's helped a bit. Why does this stuff always happen when the vet is closed.

It's not like when Dr. Flynn was around. He was a farm vet that you could call day or night, there weren't a lot of extra charges for the odd hours of the call. Maybe we need a Pet Emergency Room. The city vets could rotate duty.

We have a crabby old man as a neighbor who is horribly vindictive. He got his tail in a knot this summer when we put up the privacy/safety fence for Ryan and I wouldn't put it past him to try to hurt Poppie. Last summer he threw a stuffed hedgehog with a firecracker over the chain link. The dog, of course, ran over to it. Fortunately, it fizzled out or it would have hurt her. He didn't think I saw but I was looking out the window at the time so saw the entire thing. I hope he wouldn't take out his anger issues on a harmless little dog in her own back yard. I'd like to believe that he isn't that twisted. I want to believe in the goodness of people.

When Ryan and I prayed for the dog this evening (yes, we prayed for the dog) I added a prayer for him. It must be horrible to be so angry and unhappy all the time. Can you imagine? Actually, I don't want to imagine.

So, when you go to sleep tonight or if you're reading this on Thursday morning, please pray for our pooch, Poppie. We love and we want her to feel better. Also please add a prayer for my neighbor who is so very unhappy and angry.

Remember, I'm praying for you too.
God bless,
Much love and joy,

Karen

You Matter!

2010-11-01T19:36:00.000-07:00

Hi everyone,

How are you all doing?

I went to a conference on transition last week but I've already transitioned Ryan so a lot of it I knew. Actually, I didn't learn a thing, which was a bummer. Usually I can bring home something. However, Ryan wanted to go so I registered us. Keep in mind we went through all of this about three years ago.

Then at the last minute Ryan didn't feel well so I went alone to collect materials for him. I did collect some nice brochures and it was wonderful talking to parents and other professionals. I just kind of spent the morning networking. Then I didn't return in the afternoon, Ryan needed me.

I always feel so clueless and yet, when I go to these things, I am amazing at how much information I've gathered over the years. I ran into a couple of parents that were newbies and I hope I helped. Maybe that was God's plan for me being there. It was about someone else.

I'm always surprised by that too. We tend to think everything is about us and ours because we have to advocate so often. When we realize it isn't, that others are in a place we've already been ... that maybe we can help ... it;s even a little shocking. We do contribute. We are of value. What we do matters.

When you wake up and feel like you can't fight one more battle remember that. What we do ... matters. It matters to our children, it matters to other children with disabilities, it matters to some parent who is coming through the same crap after us. It matters.

So get up, take a deep breath, pick up your imaginary light saber and head out as the warrior you are. You are Wonder Woman. You are Xena Warrior Princess, you are a mom of a kid with disabilities. You rock!

Have a wonderful day. Be strong and fierce. I love you.
Karen

Thank Goodness for our Families

2010-10-25T07:08:00.000-07:00

Good morning ...

How are you? This silly pic was taken of Ryan acting goofy, sitting next to his best friend, his grandmother. Which brings me to our topic for the day, family.

What would we do without them? Be it a spouse, other children who help, or our parents who care for our twenty year olds for us so we can work or get a few things done, the bottom line is the same ... it's crucial for our overall health.

I love spending time with Ryan, that's never an issue. I do, however, have things that I need to do that he can't be a part of. You can count on family to help out when you need medical attention, have a meeting after work, or have an emergency you need to deal with. Ryan's grandmother is especially helpful.

Ryan loves spending time with her and they are constantly cooking up some new recipe together. She watches cartoon videos of dinosaurs, reads him Charles Dickens (he loves, I don't) and looks up items on the Internet with him.

Most people who are caregivers have a small network of people who can care for their child. In fact, that circle of people can be very small. I love when my mother or brother help out because I know they appreciate Ryan for who he is, not what he can or cannot do. I feel secure when I leave Ryan with either one, knowing that he will be cared for and included, not ignored.

As we move through the day today let's give thanks for those who help us raise our children with special needs, even if it's Walt Disney!

God bless all of you,
Much love and joy,

Karen

Rambling and Roadtrips

2010-10-24T06:01:00.000-07:00

Good morning everyone,

I have a few minutes before church and thought I'd blog since the rest of the day is filled as well.

Here's a pic of Ryan and his Best Buddy, Sam, at the Halloween Dance Friday evening. Ryan was a surgeon and Sam was Indiana Jones. They had a great time. A shout out to Student Council for Exceptional Children and Best Buddies.

Ryan and I actually spent Saturday at home! What a concept, right? Like any other person living in this neck of the woods I tend to get a little manic, living outdoors as much as I can before winter is here. Not that I'm a total houseplant in winter but we don't take all the roadtrips we do in the summer. Fall is such a great time to head out and see the countryside. We love our roadtrips.

Here's a shot from our most recent roadtrip down along the Mississippi River. We stopped at the Nelson Cheese factory and had lunch. All of this time in the community helps Ryan. It gets him out to talk to people, practice ordering food, even figuring out where the line is and how to wait in it becomes a lesson in living.

At the cheese factory you wait in line to place your order. You pay for it and then wait until they call your name OR if you're going to sit in the eating area or on the patio you let them know and they bring it out in a basket. Since eating outside is rarely an option for Ryan we chose the little bistro area. The chairs aren't the best for people with gait issues and coordination issues but with a little care and attention they're fine.

Ryan's adult services plan have allowed us to take advantage of the community more through these roadtrips. We actually crossed the Mississippi after lunch and headed down to Winona where we could view the channel and some barge traffic.

We forgot the FM system, however, which was a real pain in the butt. Ryan hears the best, especially while traveling, when he wears it. Not only that, but it's Soooooooooo much safer for us, since I don't have to try to sign or turn so he can read my lips if he can't hear me.

I hate it when I forget to bring equipment. It's annoying. At any rate, we had an amazing road trip.

I suppose I'd better get my butt in gear. Church starts in half an hour. We only live a couple of blocks away but I like to get my usual spot, you know. We're all such creatures of habit, aren't we?

Take care and we'll talk soon.
Much love and joy,
Karen

Facebook and Farmville for our Teens and Young Adults

2010-10-20T07:14:00.000-07:00

Good morning,

I hope today has started out well for you. I wanted to talk about facebook with you today.

On facebook there are a number of zynga games that the teens and older kids are playing. I'm sure you've heard of Farmville, Zoo World, Frontierville and the like.

I had my doubts about Ryan being on facebook at all and if he'd be able to master something like Farmville but nothing tried nothing gained, right? So I got him a hotmail account, filled out a fairly restricted facebook page and friended him to family and close close friends only. THen I got him on Farmville, found him friends and family as neighbors and began the long process of teaching him the mechanics of the game. Over many months, he can now harvest crop, trees and animals by clicking on them, plant crops and even click on neighbors posted at the bottom to visit their farms. He still needs help with manhy of the steps but he feels like he's part of the young adult community. It's sooo worth it. It's like a simple computer game with the added benefit that he's interacting with family and friends.

We're working on IM. People IM him and he's good with one word answers but sometimes needs me to help. Often if someone is IMing he wants to Skype them so he can see them talking too. Not too many family members have gotten skype yet and we need to badger them into it.

At any rate, not that I'm promo'ing Farmville for zynga and Facebook, but you might want to try your special young adult or teen out on it. It really makes them feel like "everyone else" as they buy talk to each other about their farms when they see each other. It's just one more way of communicating for Ryan. Everyone wants more neighbors so we do get friend and farmville requests. I'm the one who "accepts" or "rejects" those. So far, so good. While there have been multiple warnings in the media about privacy breeches, YOU set the privacy setting and it's the kids and adults who are sharing with everyone that end up in trouble. Stick to family and close friends for your loved one with special needs.

Email proved to be too difficult but we're working on that too. Who knows? Again, sometimes things just take a while.

Good luck if you try it. A word of caution, you may find that you enjoy it too!
Much love and joy,

Karen

Coping with Isolation and Frustration talk

2010-10-16T09:38:00.000-07:00

Good morning,

October has to be one of my favorite months, one of twelve anyway! I love the warm days, crisp nights, no AC or heat! The one thing I can do without is all the burning.

Saturdays are the only legal burn day and you need a permit. SNORT! People burn all the time and I'm here to tell you they are burning more than leaves and brush!

Not only that, those cute little "firepits" are becoming burning dumps. You can tell the minute someone starts burning garbage. It annoys the heck out of me because it's illegal for one, secondly Ryan has respiratory difficulties and burning means we have to close the house up tight on a day when we could have it flung wide open! And thirdly, IT STINKS TO HIGH HEAVEN! Am I right?

This week was a good one for Ryan. We only had a few days where he had trouble. One woman, when he was younger, was all snaked up because she didn't think people with Cerebral Palsy had breathing issues since the lungs weren't a muscle. I just smiled and didn't engage. It cracked me up, however, that the next issue of Exceptional Parent magazine talked about that very difficulty for kids with CP. You gotta love God's timing on that one. I'm sure she read it. ;-)

I've been busy lately with Children of Light and all that goes into releaseing a book. While the book is primarily faith-based, the presentation that is doing the best is general in nature.

The presentation called, "Coping with Isolation and Frustration" has been received very well by all groups, especially parents of children and young adults with special needs. It's a talk about various proven methods of lessening stress. I've given the talk to writing groups, women's groups and other parents. I can do the straight presentation OR if a group is interested in a presentation with materials to take home there is a fee. I'm booking the presentations now so if you're interested please let me know. The materials are artistic in nature.

Have an awesome weekend and I'll see you tomorrow!
Much love and joy,

Karen

Halloween Hate

2010-10-13T18:22:00.000-07:00

Hi there,

Sorry my posts have been sporadic but work is insane.

Ryan is getting ready for Halloween and the big Best Buddy/Council for Exceptional Children Dance. He and his Best Buddy, Sam, go every year. Two years ago they went as the Banana Republic. It was unintentional, I assure you. Sam had spent a semester in Costa Rica and came back with his ensemble.

Ryan decided to be a banana without knowing that so when they met at the dance, they meshed perfectly. Too funny.

So ... With that in mind, last year they went as Ketchup and Mustard.

Aren't they a stitch? They have such a good time.

I bought Halloween Candy today at Sam's Club. I made the mistake of opening one bag ... yikes. I hope I can stay out of it. LOL. Like that'll happen.

I remember going through Halloween Hate. It broke my heart that everyone had someone to trick or treat with and Ryan had only me. Some years we went with other people, but most years he went alone with me. He still loved going but it shredded me. All those little hurts that parents of children without disabilities rarely know.

Now that Ryan is older and a part of Best Buddies, there is a dance every year. It's well attended and a great place for young men with disabilities because it's loaded with girls, girls, girls. Plenty to dance with, talk to and hang out with.

Halloween is now fun for both of us. Good luck this Halloween and remember that I know just what you're feeling. I pray that you can find something for you to do together, be it trick or treating at the mall, downtown or in your neighborhood.

God bless and see you soon,
Much love and joy,
Karen

River Weekend

2010-10-09T08:29:00.000-07:00

Good morning,

Here's Ryan's dog, Poppie, smiling at the camera. What a ham!

The river was awesome yesterday! We saw all sorts of barge traffic, bought a b'day present at LARK Toys and had lunch at the Nelson Cheese Factory. If you want to take a road trip this weekend along the river check out my current column Life on the Exceptional Side in Family Times. I have detailed information of a variety of great spots to visit along the Mississippi River.

We were planning on visiting friends today but one of them has a virus so they canceled. No sense in walking into something like that. It's one thing to catch it by circumstance, another thing to think you're invincible, especially with an immunosuppressed kid.

Gotta fly, the day is moving and I'm not. So sorry for the sort post but you know how it goes. It's 10:30 and I haven't even worked in a shower yet! Errands and a cookout with family await.

Take care and we'll see you soon,
God bless,
Much love and joy,
Karen

Indian Summer

2010-10-08T07:52:00.000-07:00

Good morning,

Are you enjoying the day? I know we are! It's going to be 80 degrees and sunny, the perfect Indian Summer day. Yummy!

We're heading to the river today. Ryan wants to go on a photo safari and it sounded like a great idea to me.

Ryan has a really good photo eye and I love to see the advant garde shots he comes up with. They're so unexpected.

Sorry so short, my friends, but we must get on the road,
God bless,
Much love and joy,
Karen

Running and Waiting

2010-10-06T07:03:00.000-07:00

Good morning!

Don't you love these cool nights and warm days? I love, love, love the gorgeous fall leaves.

I realized that I've been speeding through my blog and not even taking the time to spell check when I'm done. I feel bad about that. When fall starts we are crazy busy with life outside of cyberspace and for a while my blog became kind of slap dash. I apologize for that. I hope you got something out of it anyway, even if it's only the knowledge that I'm as frantic as you are! ;-)

I'm working on my books and the first one will be out soon. Wanna see an excerpt? Here's the start of Chapter One.

Chapter One
All I wanted to do was hold my baby. I sat on the outside of his egg-like incubator, looking in. Ryan was connected to a snake’s nest of wires and tubes in the Neonatal Intensive Care Unit (NICU). A ventilator sprouted from his tiny mouth to help him breathe and tape covered half his face to keep the tubes in place. A pharmacopoeia of drugs surged through his small body doing only God knew what.

I stood and gazed at my two-week old baby, a child I had never held. My arms ached with longing as I hung over his isolette, touching the small head with its bruises and soft fuzzy hair through holes on the side of the enclosed plastic bubble. A bandage flapped loosely on his purple and swollen heel where blood draws had been performed until the skin was angry, bloody and distorted. Grief pushed me down. I sank slowly into hell...the trip there as bad as the arrival.

The book is called Children of Light, and is my story as a Ryan's parent, a parent of a child with disabilities. It's candid and honest. It's a faith journey and a book of nurturing for other parents and caregivers. It's about a normal person suddenly thrust into a world of exceptional needs. If you're interested in getting notification when it's out just let me know.

Do you ever get tired of running and waiting? I run Ryan to massage, then I sit an hour and wait. I run Ryan to choir, then I sit an hour and wait. Yes, I run errands, write or walk, depending onteh weather and where I am, but it's still time that is invested in our kids that other parents don't think about. They can drop their kids off, usually for more than an hour. They can rely on them to call for a ride when they're finished with an activity, for the most part anyway, and they can car pool. Car pooling would be great but Ryan's activities don't really lend themselves to the car pool crowd.

I want him to go to all the activities that he wants to attend but I do get tired of careening around town, son in tow. Does that make me lazy? A bad parent? Ryan is twenty years old now, so I've had a couple of decades of running. Maybe this is another grief step I'm going through. Grief that I'll never see him do this stuff on his own, that I'll always be running him, his entire life. Maybe it's the realization that there is no end to it that gets me down.

What do you all think? If your loved one has been an adult for a while, is this something that we go through, as parents of children with disabilities? That weariness of running and waiting? Or is it part of the larger grieving process.

Let me know your thoughts and solutions if you have them,
See you soon,
Much love and joy,

Karen

Booya and Beavers

2010-10-04T08:01:00.000-07:00

Good morning!

Ryan recovered in jig time so he could attend Booya Festival as Paddy Beaver. Here he is chatting up attendees.

He did well talking to people. Most little kids ran up to him and hugged him but a few of the little guys (under two years old) were a little scared. It's not every day you see a six foot beaver coming at you!

Here's the cook, stirring up the booya and you can see the musicians in the background as well as Paddy Beaver making the rounds.

Both regular and vegetarian booya were served as well as hotdog and brats.

The observatory people had a telescope out to see the sun which was awesome. It appeared as a great big red ball and you could see a sun spot in the northwest corner of the sun. Also you could see solar flares by watching the edges. Honestly, it looked like a film I saw in health class of sperm attaching to the ova. They were little squiggly lines.

The fall weather was crisp and autumnal. Just perfect. I just they were up around four hundred attendees when we got there and we stayed to the bitter end.

Just before we left I took a quick photo of the picnic table that was wheelchair accessible. I like seeing that, you know?

As you can see, there were some close parking spots as well. All in all a great time. There were crafts and games for the kids and a building in case it rained. A shout out to all the staff for amazing planning and the volunteers for making it fun!

Gotta scram, work calls.

God bless you!
Much love and joy,

Karen

Mums, Moms and Health

2010-09-30T07:52:00.000-07:00

Good morning.

Ryan's still feeling punk but better. I'm glad that his respiration sounds better, that's always a panic. We used to use a nebulizer but found that the rescue inhaler actually worked better than the machine. Ryan's doctor believes the same so fortunately that wasn't a fight. Some are so old-school and believe that the more hairy a machine looks the better it is. However, I would remind those of us with some age that when I was in college computers had huge card decks and filled entire rooms. Now we run around with laptops and i-pads!

This is a mum that Ryan chose for his horticultural beds. He chose two others too.

The one if front is orange and the one behind the other two is yellow. He wanted them out front my his scarecrow for a while first. He also got a small pumpkin and some funky looking mini-gourds out at Klingers. We put the goards in an old apple basket and he lovingly set them next to the scarecrow.

Then, his massage therapist, who lives on a farm, brought in a beautiful pumpkin for him. He was absolutely thrilled to set it next to his little one.

I think his illness this time is passing more quickly and not as severe. I think his being outdoors more and playing with the plants has bumped up his vitamin levels and made him healthier in general. I hope so! Just one more benefit of horticultural therapy. Well worth it if we don't spend money on medical.

Well, I'd better fly. I hear Ryan and need to get him settled.
Have a great fall day, it's another stunner!
Much love and joy,

Karen

Fall is an Event!

2010-09-29T07:32:00.000-07:00

Good morning everyone,

Ryan is feeling poorly this morning so my post will probably be shorter than my usual short posts.

The fall has started today on our street. We call autumn Fall but really the fall is an event. Suddenly, the leaves start falling like large colorful snowflakes. You can hear them clicking on their way down to the ground.

In times past, including my grandmother, people would say things like, "We'll see you in the autumn, right before the fall." Meaning September. "We'll see you right around the fall" meant the first two to three weeks of October and "In the autumn, after the fall meant late October and November.

It's fun to imagine planning things around natural events. We still do to a degree but we rely so heavily on our calendars that we've forgotten the events and use the terms synonymously with the seasons.

At any rate, that's my soapbox today. Have a great one, it's GO JUS out there today!
Much love and joy,
Karen

Rising Waters

2010-09-28T06:40:00.000-07:00

Good morning,

This is a photo taken of Ryan a few weeks ago, walking on the labyrinth at the park nera the river in our town. You can see the river in the distant background.

Unfortunately, we've had copious amounts of rain and reached flood stage on Saturday. I saw it on Saturday and it creeped me out how close it was to the bridge spans. Yikes!

On Sunday, we went back to this same park. The waters had receded substantially but the water was churning angrily and moving so fast.

The water here was actually up to the rocks around the edges. It had gone down several feet from Saturday. At least you could see bridge parts under the spans decently.

The water has begun to move south and is now causing problems along the Mississippi and it's tributaries.

Sometimes in our lives we find that the floods come and overwhelm us. We have trouble believing that it will all be okay again.

There was a man who, when talking to Jesus, pleaded, "I believe. Help me in my unbelief." I think we forget that when floods come we have a place we can go in refuge. If we're having trouble believing that it'll all be okay we can pray for that belief. Ask and it shall be given. If you want to believe, and you ask to believe, you will be blessed with belief. The next time the waters rise in our lives we can fix our eyes on the one who can comfort us.

Have a good rest of the day.
Keep your feet dry,
Much love and joy,

Karen

Cold Frames

2010-09-25T10:48:00.000-07:00

hello there!

Finally, the sun! We're keeping so busy today that this is a quicky blog.

Ryan saw some cold frames at Menards and wants to try them this fall and next spring. Sheesh! I have to figue out how to do that. He'll have us composting next. Actually, he asked what the cold frame was, when I explained it he was very interested in the longer growing season. He has LOVED his gardening this year!

I'll let you all know how it all turns out. I'd better get going and hope to blog more extensively next week.
God bless and take care,
Much love and joy,

Karen

It's a Doggy World

2010-09-23T08:33:00.000-07:00

Good morning everyone,

I decided to post a pic of our puppy, Poppie Yo Yo Neck. Ryan names the dogs and every one is "something" Yo Yo Neck. Don't ask. I just go with it. She looks pretty happy with him scratching her tummy.

She's twelve now but healthy as a horse. We had a bout with Lymes disease a few years ago that nearly killed her but she's fit as a fiddle now. She has a little more trouble seeing at night (as Dr. Flynn used to say ... "She's probably having a little trouble reading the paper these days." She's a good dog except for when company comes over ... then she's like, "Watch me do this flip off your chest!" or "I'm only 70 pounds, I can fit in your lap." I've read dog training book after dog training book ... apparently I need Cesar the Dog Whisperer. I gave up and now I just put her in my son's room if someone comes to the door.

Pets are such a huge part of our lives, aren't they? I get frustrated with the hair, the wet dog smell (which is non-stop lately, thank you) and the other little idiosyncrasies our dog has but we love her dearly and she makes us laugh, a lot. She's a perfect playmate for Ryan and she worships him. When he goes to his grandmother's for the day she's sad. She doesn't eat, barely drinks and lays around sighing. When he gets home she leaps up, grabs a toy and tears over to him, smiling (yes, she smiles) ready to play, love in her eyes.

A lady I knew bought her son with autism a dog and said that he was getting too familiar with the dog so they ended up getting rid of it. I don't know what that meant but I don't want to know either. They'd never had pets, however, so perhaps the amount of work involved was a factor. I don't know. I just think people should ALWAYS start with an older dog from the pound/humane association. Don't start with a puppy please. Puppies are a he**ish amount of work! Start with a dog about five years old and then make the second dog you get a puppy.

When this dog goes, we'll struggle to do without for a while, talking about the benefits of not having that kind of doggy committment and responsibility. About a year into life without a dog ... we'll get another one. I get sucked in by those big soulful eyes and Ryan is no better.

Poppie is a mutt. She's half golden retriever and half springer-cocker mix so she has that mutt longevity factor going. My brother had a pure breed, a Gordon Setter that was gorgeous. Jack had problems, however, that mutts typically don't have. One more argument for the human assn.

At any rate, the rainy day moves on and so must I.

Much love and joy,

Karen

Autumn Fun

2010-09-22T07:27:00.000-07:00

Good morning folks,

I hope that today finds you happy and safe. I've been pondering the topic of my next column for Family Times and think I might do one on fall fun. What does your loved one with special needs like to do in the fall? Ryan, for one, can't quit picking up pretty leaves. He brings them home, they curl and fall apart. It's no big deal because there are more to replace them.

If you leave a comment on what you like to do in the next day or so with your first name and last name initial I may quote you in the article. For example, "Karen O. says that her son, Ryan, loves to gather fall leaves so they travel to the Knapp Hill to make sure he gets some great ones."

It'll be fun to see your name in print! You can also privately send me the comment at Life Comments if you'd like.

It seems like the autumn colors have popped in the last ten days. It always takes me by surprise and takes my breath away as well. The deep azure of the sky, the intense yellows, reds and oranges. I never tire of looking at it. My Hop Hornbeam tree in the front yard experiences "the fall" of leaves early. Actually, that's awesome because my neighbor across the street has a stunning sugar maple that we loves to look at.

I'm a baked potato LOVER and it's potato season!!!! We were at Klinger's the other day and they were bringing them in by the tractor loads. I bought a butternut squash too and it was delicious. I got these cute little goards (in the photo) three for a dollar. Honeycrisp apples are hitting the stores too.

I need to join my Real Life here so I'll say hasta luego.

Have a wonderful day and stay high and dry, okay. Looks like we're due for copious amounts of rain! Time to set up the scrapbook table!

Much love and joy,

Karen

Fall Maple

2010-09-21T06:48:00.000-07:00

Good morning everyone,

We're in fast forward this morning as Ryan's nurse is coming at 9:00. I'll keep this short.

Isn't that a great fall tree? IRL it's much more vibrant! It's across the street from our house and one of the earliest maples. It was taken during a rare day of sunshine so it's a little washed out. I've learned that fall foliage is better taken on a blustery day ... like today!

Hey, I'm looking for good restaurants that are disability friendly ... anyone know of any? Please comment and leave the name of the place and the town it's located in. A great steak is always appreciated!

Like I said before I'm going to cut this short. Today I pray that you are blessed hugely by teachers and staff at school.

God bless,

Much love and joy,

Karen

One of those days ...

2010-09-19T05:59:00.000-07:00

Good morning everyone,

Do you ever have one of those days when you feel like you get the fuzzy end of the lollipop every time? Yesterday was one of those days for me. Normally, I can just let things go, but once in a while I revisit every slight that's ever come my way and as the day wears on the cumulative effect weighs me down until I'm slouched over and grumbling. it's just better if I go to bed and stay there.

It started with stubbing my toe to the point that I may visit the ER today to make sure I didn't break a bone in my foot because of it. We went to the International Fall Festival. We ordreed lunch ... and they forgot mine. We went to our favorite farm to get squash and the employees there were positively snarky. By the time late afternoon hit, I'd dredged up slights from friends, family and strangers to such an extent that I had a substantial pity party going.

We finally gave up and came home. There I was able to relax and regroup ... and pray. I prayed that I would forgive those who had offended me, that I would see things with humor and tolerance and that I would recognize when it was time to go home and cocoon with my son.

We spent time enjoying each others company, watching a movie with popcorn. Thank God for our families, they make those awful twisty days straight and true. Along with them, our friends and faith, we can do anything.

Have a wonderful sabbath,

Much love and joy,

Karen

Weekends and crowds

2010-09-17T05:46:00.000-07:00

Good morning everyone,

Since it's so gloomy and rainy today I decided to send you a sunny day pic. Looks amazing doesn't it? There's something about the color yellow that just makes us feel good. Must be tied to the sun somehow.

How are you doing today? It's the end of the week. Are you looking forward toward the weekend? Or are you wondering what to do with the kids? I recommend picking up Family Times or Volume One in this area. They list things to do. Family Times, especially, lists kid-friendly options.

Because Ryan and I are able to take advantage of places during the uncrowded weekdays we used to stay home on weekends to avoid the crowds. Then I realized that I needed to teach Ryan how to operate in a crowd situation. We've always participated in festivals, which are crowded, but not Saturday afternoon crowded. So we've started moving with the masses so that he can learn coping skills.

We still go on the non-busy days so we can take our time and truly enjoy the experience but we don't avoid the crowds anymore. My advice, tackle a crowd once in a while. If it doesn't work, it doesn't work. You might be surprised as your loved one grows up, however, and it means heading out on the weekends all over again!

Have a great weekend

Much love and joy

Karen

Bridges Between People

2010-09-16T08:35:00.000-07:00

Good morning everyone,

How are you? We got 2+ inches of rain again last night. I'm weary of it. Everytime we get over a couple of inches of rain, which lately has been ALL the time, I get a little moisture in the basement. No more than a couple of gallon jugs of milk's worth but annoying nonetheless. What irks me is that I have to deal with it the minute I get up or it stinks. The minute I get up is not the best time for me to do manual labor. My joints need to loosen up, you know? Arthritis is so stupid. At any rate. Two rolls of paper towels later I'm done, showered and talking to you.

Building bridges between people is so important. Ryan has found that by pursuing his hobbies, he is meeting people of all ages and developing relationships that will last. He doesn't, however, have a close friend, which is something he'd love. Sam, his Best Buddy, is wonderful. He picked up Ryan last week and they ran all over campus taking photos of the bridge, the water, Owen Park and other things that were interesting for Ryan. A couple of hours later they strolled in drinking pop and laughing together. That bridge is a strong one.

If you've hesitated to put your young adult in Best Buddies I really think you should reconsider. We had a couple of no shows but then we got Sam 4+ years ago. (He graduates in December .... oh no!) Ryan and he chat on the phone, and do things together outside of the required elements of the program. If the program is followed like the Kennedy set it, it has unlimited potential for nurturing and change of attitude.

At any rate, they'll be starting soon so you'll want to contact your local chapter by accessing the main website. Just Google Best Buddies.

Have a marvy day and see you tomorrow,

Much love and joy,

Karen

Verbal Processing of Physical/Kinesthetic Actions

2010-09-15T08:22:00.000-07:00

Good morning everyone,

This is a picture of Ryan, delighted that he could stand on this rock. He couldn't make the step up without support but when I instructed him that the step up from the back was a much smaller rise he was able to get where he needed to be and was so happy with himself.

We forget how some of those easy things we do can become so difficult for someone with disabilities. We take those blessings for granted. I recently had a reminder with my hip replacement surgery but my disability was temporary, his is permanent.

It was such a blessing when someone would anticipate what I needed without going overboard, or make a simple comment or suggestion that changed my perspective. Someone holding a door when I was on crutches was a big deal. Someone not parking too close to the handicapped spot so I could get out with all my gear, another biggie. Someone leaning down, unasked, to retrieve something I'd dropped. All those things helped make life easier.

With Ryan, I've learned to self talk and verbally process what I'm doing. I've always liked to verbally process my emotions and ideas, now I've generalized that skill into my physical/kinesthetic awareness to assist Ryan.

When we climbed onto the rocks, I had one crutch. Ryan sat on the rock and I said, "Let's stand on them." He looked at me, uncertainty furrowing his brow. I looked at the stone, "This too high for me to step up, I wonder if I can get onto it from a different side. At a glance I could see the back was lower but I wandered to the side, examined it, then walked to the back. "Hey, this is littler. Maybe yours is too." He watched me get onto the stone and journeyed around his chosen rock. He stepped up and gave me a brilliant smile. I snapped his photo.

By verbally processing my actions, and suggesting that his situation might be the same, he was able to accomplish what he wanted to do with minimal help from me.

As you move through your day today, try to verbally process what you're doing to your child with special needs. I'm not talking about our normal dialog, but a carefully thought out way of doing something.

Good luck and see you tomorrow. I have to get busy writing my column for Family Times. Don't forget to pick up a copy. They're available the first part of October.
Happy Fall!
Much love and joy,

Karen

Olfactory Memories

2010-09-14T07:44:00.000-07:00

Good morning everyone,

Sorry I didn't blog yesterday, life happens, you know? I usually blog the minute I get up, lately that's been derailed a little.

The Canadian geese are on the move today. I love listening to them. I've always kind of felt that they are MY bird. Funny how we do that. Probably some memory from my childhood that I only recognize in their call.

Ryan used to make olfactory memories when he was younger. I'd see him race up to a family member and inhale deeply. When he was old enough he'd ask for permission. We were in WalMart with my grandmother and she'd been fooling with him because he was riding in the cart and she was pushing it. They were having a grand time. He looked at me, still in diapers, mind you, and asked, "Can I smell her?" Rather, "Tan my 'mell her?" Great Grandma laughed and moved closer. He hugged her and inhaled deeply. They shared a moment afterwards as he looked into her eyes. It was such a blessed moment.

He smelled Grandpa, Grandma, me ... anyone he cared about. I remember when he was little. He was so sick. I'd been unable to get him to sleep. We'd been to the emergency room ... again ... and I was exhausted. I laid him in my bed. I often slept him with me, especially when he was sick. I was changing into my jammies. When I turned around Ryan was out like a light, my grubby, sweaty sports bra in his little fist, jammed up to his little nose. The next day he wouldn't be separated from it, even in my lap. I suppose, because I'd sweated in it, my smell was strong and it comforted him.

After that if he couldn't settle down I'd hand him a t-shirt or something I'd worn and he'd gradually drift off.

When Ryan was born and airlifted to Minneapolis Children's Medical Center the first thing I did when I finally got to hold him was to smell him. I couldn't get enough of his smell. I guess we're closer to animals than we think, especially when we're just trying to survive.

It goes back to sensory memories in general, but then, that's a topic for another blog.

Have a great day. Remember, I'm praying for you and your special someone.

Much love and joy,

Karen

New Floor Prep

2010-09-12T06:10:00.000-07:00

Good morning,

It's a great day to get outside and do something. Visit a pumpkin patch, rake, mow, play croquet ... whatever. Me? Well I have to clear out my kitchen. Yeah, I know. What a drag. We're finally, after a bazillion years, getting a new kitchen floor so I have to have everything except the stove and frig off it.

Now under normal circumstances that's not much, however, I have a free standing pantry, a microwave cart filled to the brim and ceramic tile stored on the floor of the real pantry. I figure I'll put the microwave card in the entrance to the bathroom, the freestanding pantry in my bedroom and the stuff in the bottom of the other pantry in Ryan's room. The chairs can go in the living room as can the table, frig and stove.

If you haven't figured it out yet, our kitchen is the core of the house. In order to go anywhere you have to cross the kitchen. We can't even go to the bathroom without crossing the kitchen! If we have to go, we have to leave! I'm cutting off my liquids because, as I age, I pee hourly sometimes. Too much sharing? Sorry about that. I figure Ryan and I will play Wii in the living room for one of the hours. Maybe watch a movie for a couple more. Apparently it can take a while.

At any rate, I'm excited to finally be moving on it. Ryan has asthma but the "guy" assured me that the glue and sealer don't cause any respiratory problems, that was a relief. The minute I tell Ryan he can't go to the restroom, he'll probably have to go. Can't blame the kid, I probably will too. Our church is about a block away however, so we can jet up there.

Wish me luck! God bless you and yours today. May he wrap his arms tightly around you and show you his amazing love.

Much love and joy,

Karen

Self Important Parents

2010-09-11T06:53:00.000-07:00

Good morning,

How are all of you? I see I didn't get flamed after my tirade on Disney flicks in school yesterday, maybe someone out there agrees with me?

Have you ever run into those moms of kids with disabilities who think they (a) know it all (b) aren't going to tell you about it, and (c) have an attititude of superiority? Sometimes they have jobs in disabilities and have lost all their power as parents and advocates because they have to do what their boss tells them to do, without complaining. That's a hard line to walk, and I feel for them. Sometimes they're just know-it-alls. ;-)

Parents go into disability jobs thinking they'll make a difference, and many of them do make wonderful differences, but make no mistake about it, they are walking a line between being a parent and being a professional in the helping field with all the garbage that comes with that. It can't be easy.

Then we have those parents who think they are "entitled". I spoke for an adult services program a while back and there was a mother there who just about had kittens. It was a new program, she was there to get information for her child and it just ticked her off that she was getting information from me. She even said (sotto voz of course) "I would think with all my years and experience that I would have ...." A direct look from me stopped her but she spent the rest of the meeting trying to "put me in my place." Sheesh!

The thing is, our kids are close in age. How she thinks she could gain such expertise in everything and I would gain none is beyond me. It's hurtful and frustrating. I've worked on projects statewide, albeit quietly and with less "stage" presence in front of other parents. A lot of that is through my writing. There will always be those parents who are puffed up in self-importance.

This woman and a lot of the people in that room hadn't gone with this new program initially because they listened to a different parent, instead of making up their own minds.

Ladies and gentlemen, please do your own research! This program has been hard work because it's new but it has been AMAZING for Ryan. It has truly started integrating him into the community in a way I couldn't have foreseen.

YOU are your child's best advocate. YOU know what fits him or her. YOU are the expert on services that blend with your lifestyle. And you know what? It's all about YOU and YOUR child with special needs.

Remember ... YOU are a ROAD CROSSING MOMMY DUCK (look in the blog archives for this post if you haven't read it). Blaze trails! Try things out, if they don't fit, discard them and move on!

I pray that you find exactly what you need to give you confidence and contentment as an advocate for your child. God bless you. Have a wonderful weekend.

Much love and joy.

Karen

Disney Videos should not be shown at School!

2010-09-10T06:29:00.000-07:00

Good morning everyone,

TGIF, right? This week just flew! How is your child with special needs adjusting to the school year? Are you happy with the way things are going?

It's hard sometimes to trust others to notice what we so easily see in our kids. We know our children so well, often times communicating without words. When they go to school we wonder who will understand them, what they want, or need.

One thing I had to do when Ryan was in elementary school was to pull him out on Fridays. Ryan is highly visual and the amount of Disney video watching at school was horrific. I kept up my end of the bargain, so to speak, by not letting him watch videos on school nights. The films made him too hyper and affected his sleep. Instead we did projects, read books and worked on a chore based philosophy together.

Typically he'd watched some kind of Disney flick at school each day. I'd ask him which one and he'd tell me then we'd spend the first couple of hours after school reining him back from Disneyland. However, when Friday night arrived, my son was an exceptional mess. Wondering if he'd watched a video at school I'd ask "Which Disney show did you watch today?" (Not only that we had some echolalia going on with lines from those movies, a dead give away.)

On Fridays he always listed anywhere from three to five movies. His teachers were using Fridays as a "recess" or "planning" day and the kids were watching nearly back to back Disney videos. I had the luxury of pulling him out of school on Fridays every week and he did much better overall. Seriously, he was a quivering MESS on Friday nights after that much TV. I probably would have been one too!

I don't know about you, but unless a video is educational it has NO place in the classroom. When I saw what it did to Ryan? Sheesh! Not only that, how do you even visually process FOUR OR FIVE movies in one day??? I'd be a hot mess too, to say nothing of someone who doesn't have my coping mechanisms. Fridays became a very restricted environment when he was in school, so having our Fridays together, engaging in the real world, made more sense.

Now, if you're a teacher and angry about reading this ask yourself ... "Why am I angry?" Is it because you're showing Disney videos?

As a mother, here's a plea from my heart. Please stop. Please please please. Please teach my child, work with my child. If you HAVE to have some time to prep, then show a Nat Geo flick on something. Get college interns to take over that section of your day.

If you're a parent reading this and you think, "Disney videos don't affect my kid." Take a moment. How do you know? Try going ONE month without them on weeknights. Write down changes in the quality of sleep and behavior.

I have NOTHING against Disney, we especially love the Pixar flicks. However, we save them for a special movie night on the weekend.

Try it, you just might like what you see.

Today I'd like to offer up a prayer for all teachers and parents of children with special needs. May God gift you with inspiration, patience and strength as you move through the school year.

Much love and joy,

Karen

Meditation is good for our children with special needs

2010-09-09T05:57:00.000-07:00

Good morning everyone,

Ryan and I walked the Phoenix Park labyrinth yesterday. I'm teaching him meditation and labyrinth walking is one way of doing that.

First we picked a mantra, Ryan chose, "The Lord is my Shepherd, I Shall Not Want" and started walking. I walked in front of him or he got confused visually with the lines.

It went well for the first time I think. We didn't get into the reasons get. I just asked him how he felt when he was done. I loved that he wanted to totally feel the brick and center himself (literally) when he was done walking.

I asked if he wanted to meditate again and he did. This is phase one. Learning to meditate with the help of a task. We'll move on and generalize from there.

I think it's important to teach coping skills to our children with disabilities and meditation has physical, psychological, emotional and spiritual benefits. Even a repetitive sound, rather than a phrase, can be helpful.

The park is beautiful right now. We ran into a man who claimed to be an Indian Shaman and had an interesting conversation with him regarding mother earth. I love diversity. What a wonderful patchwork this world is.

Have a wonderful day,

Much love and joy,

Karen

Very Special Arts Choir Starting Soon!

2010-09-08T05:15:00.000-07:00

Very Special Arts Choir Starts Soon!

When: Every Tuesday starting September 21, 6:30-7:30 p.m.

Where: Peace Lutheran Church EC

Who: Anyone who want to sing, regardless of ability

Please consider joining. It's an amazing group of people. You can contact Jen Martin Davis for more information.

Have a great day and we'll see you soon.

Much love and joy,

Karen

Aging and Disability Resource Centers are helpful!

2010-09-07T06:07:00.000-07:00

Good Morning everyone!

It's another rainy cool day. Its like we have a monsoon season, right?

We've got a lot going on today. With homeschool we always do.

First, however, we get a visit from ADRC regarding Ryan's annual functional screen. The woman from ADRC (Aging and Disability Resource Center) is so sweet. She totally gets it. I guess that's what happens when you're raised by parents who "get it" and she was. Because there is no suspicious, "what are you trying to get away with" attitude, there is true help for us. She has great suggestions and is so caring about Ryan's feelings in the whole process. A breath of fresh air.

If you haven't contacted the ADRC as a resource, I recommend that you do. They are all over the state and YES you do have one, even if you think you don't. Call any department at Human Services and they should know how to get in touch with them.

Have a warm and snuggly day,

Much love and joy,

Karen

Winner!

2010-09-04T17:34:00.000-07:00

The winner for the second Autism Inclusion tape is Casey Watkins! Congratulations Casey! Thanks for all the entries and keep your eyes peeled for my book ... coming soon!!

Behind the Disability

2010-09-03T06:59:00.000-07:00

Good morning everyone,

I bet you're wondering why Ryan has the pink umbrella inthe car window.

We went fishing one day at Coon Forks and stopped by Teps Drive In for lunch. Grandma was with us so Ryan was in the back. If you're like me you need an extra person along so that if you have to visit a restroom, there is someone to hang with your special someone.

This day the sun was warm and the flies were bugging him (pun intended). I glimpsed the thinking person behind all the disability crap as he poked the umbrella out the open window and opened it for a sunshade.

For those of you reading this, yes. It's just that simple. To see a normal action on the part of your kid really is something to write home about. Sometimes even if that action is something that is a tad manipulative. For example. Amy was Ryan's third grade teacher. Ryan and I both loved her. She had three or four boys of her own so recognized "boy behavior" which I loved. Since I grew up with brothers and mainly boy cousins, guys don't hold much mystery for me either.

At any rate, one day she approached me and asked if we could work on Ryan learning to tie his shoes. Apparently, after lunchtime and recesses, Ryan came in and took off his boots. He then put one foot on each desk and had two little girls working on each foot to get his tennis shoes back on. I laughed. Being Amy, she smiled and wanted in on the joke.

The fact was, Ryan's g'ma had spent every moment she was with him teaching him to tie his shoes and he'd learned the task some time ago. He was loving the little girl attention. We both laughed at the "little boy" thing. She wasn't offended and totally understood my perverse pleasure that Ryan had managed to get himself a little positive attention.

He did tie his own shoes after that, a task mastery that still comes and goes. Once again, we saw the child behind all that crud that is his disabilities. Sometimes I'll even do a double take. But it's gone. I wish other people would look beyond that disability. I wish that others would get to know him and see those tiny flashes of Ryan.

Behind the disability, there's an amazing young man.

Have a great day. I might not blog tomorrow because we're on the fly. But I'll be back on Sunday. Hang with me then!

Much love and joy,

Karen

The Dentist

2010-09-02T06:13:00.000-07:00

Good morning everyone,

This is a photo of the town square in my historical fiction book, Prairie Autumn, except that in my book, there is no brick platform and the benches are roughhewn logs. Plus the tree is a mighty big cottonwood. The premise is the same. A central town park in an old western town. Love it.

While we were at this museum I saw an old dentist office. Ryan has always loved going to the dentist. Everyone is nice and his teeth are shiny and clean when he leaves. I've been taking him since he was three years old.

Here are some tips for taking your child with disabilities to a dentist:

First, go to a dentist every six months yourself. Get any necessary work done. I've gone to the same dentist for years and I've only ever had one emergency. THAT was pricey. If you maintain your teeth you do two things: you prevent emergencies for the most part, something no professional likes and secondly, you build a relationship with the dentist. He or she knows that dental care is important to you.
Start taking your child every six months for cleaning and work. Sealing of the molars is a good idea. Ryan's never had a cavity. If the dentist says that your child needs work, get it done in a timely manner.
Pay your bills. Always. If you can't pay the whole thing at once, make standard payments each month. Still keep your six month appointments, even if it isn't paid off. Keep going to prevent further problems.
Maintain good dental records. I scrapbooked Ryan's appointments. (Plus they took his pic with a cartoon character each appointment.) It was that important. They've found that gum disease can affect the heart and just about everything else in your body. I've recently had hip replacement and when I go to the dentist now I have to take antibiotics before I go. It's THAT important.

Good luck with your dental appointments and here's smiling at ya ... I've gone off the deep end ... I'm officially old and corny!

Much love and joy,

Karen

The Boat Sank!

2010-09-01T06:26:00.000-07:00

Good morning everyone,

This photo is of the Julia Belle Swain paddleboat as we cruised on the LaCrosse Queen paddleboat for one of my employers.

Last night I heard on the news that, with all the rain, the LaCrosse Queen sank. Yep, sank. I don't even want to know how much it'll cost to raise and repair her. Can you imagine finding a paddlewheel technician in this day and age?

I read a book one of my friends loaned me lately that contained a paddlewheel and I found it interesting that whenever they needed to do work they blocked the wheel and put up a sign "Man in Wheel" or something similar. Gives me shivers thinking about the reason for the implementation of that sign.

Wish the rain would stop, Ryan's lungs are having a hard time handling the moisture and mold spores. We need the air to dry a bit. The AC doesn't help a whole, unfortunately. I check on him a lot at night. Apnea is a factor and sometimes I shake him into breathing again. I don't think we're at the C-pap stage because typically his oxygen saturation is fairly good, unless, like I said, we're dealing with extended allergens. It's always something, isn't it?

Well, I'd better get to work. Have a great day,
Much love and joy,

Karen

Homeschool Curriculum

2010-08-31T06:20:00.000-07:00

Good morning,

It feels like fall lately, probably because it is, right? While I'm sad to see summer go, I LOVE the change of seasons. My neighbor has an early maple and it's starting to change.

We could have stayed in bed this morning! Rainy, diffuse light ... zzzzzzzzzzz. snort. I'm awake!

We're changing up the schedule for fall and that's always a challenge. The transition really throws Ryan off but he seems to be doing a little better than I thought he would this year. Still in the honeymoon phase?

Homeschool starts on September 1 or so and we've got some amazing projects planned. I'm not totally done with the curriculum which is just stupid on my part. HOWEVER, I can change the school start date until the 10th if I want to ... therein lies the strength of homeschooling ... flexibility.

We do any homework during school hours but teachable moments crop up 24/7 and we certainly take advantage of them. Our big focus this year is on health. Physical, spiritual and mental.

eating correctly,
shopping for groceries,
registering with various agencies,
exercise, joining a gym maybe, getting bikes ready
dressing
shaving
massage therapy
haircuts ... and more

Our spiritual focus is on

Bible study
attending church
volunteering
meditation
positive influences
and more...

Our mental focus entails

understanding disability and my meds
independence
depression and treatments
anxiety and treatments
agencies and professionals who can help
how to ask for help ... and more

Our other big classes are Nature Photography, Horticultural therapy, Money, Safety 101 and too much else to list here. It's so important that Ryan learn about himself and his immediate world. In order to do that he needs one on one attention and intense teaching through ASL, music therapy and repetition until tasks hit his long term memory.

That doesn't mean he won't forget it. He'll forget some things, but that doesn't mean I quit teaching him. Yes, on some topics he'll hit the wall, but on others, he'll excel.

Have a great school year and remember, I'm praying for you.

Much love and joy,

Karen

Very Special Arts Choir Starting Soon!

2010-08-30T06:01:00.000-07:00

Good morning everyone,

Very Special Arts Choir starts soon and Ryan is so excited. He had to miss out last year due to some surgeries. This year, look out! He's ready to warble! Never mind that he's profoundly hard of hearing, he can see, feel and even hear some of it. He loves it.

If you're interested contact Jen Davis to find out more. She's a gifted director. One year she had the choir do a tympanic/percussion-type number about rain that was simply amazing. There is not the capability for one on one so if you loved one can't maintain in a group you'll either need to attend yourself or hire someone to attend with them.

Ryan loves music and I feel so blessed that he has residual hearing and that hearing aids are highly effective so that he can hear some.

They start at the end of September so make sure to call Jen soon if you're interested. Costs are minimal and your child services or adult services should be able to pick that up for you.

Take care and God bless your day,

Much love and joy,

Karen

Prize Winner!

2010-08-29T06:11:00.000-07:00

Congratulations Candy Wendt! You're our winner for the tape pictured to the left. Thank you for playing everyone!

I have a second copy to give away! Contact me at

Karen's Giveaway to throw your name in the hat. Everyone is eligible and I'll draw again next Friday. Good luck.

Ryan and I went to the Festival in the Pines yesterday and I bought way too much. Here's my cute angel for the door. She only ran about $13. I got two pair of soft faux-angora mittens (I haven't found mittens like that since my g'ma died) and some potpourri for fall and Christmas. That was the extent of it but what I really wanted were some paintings by one of the artists there, they were incredible!

Ryan loves festivals, and so do I. He found a print of a painting of the northern lights that he fell in love with. His g'ma bought it for him so he's been gazing at that lovingly. He's so visual it's hard to turn him down.

I'm turning over a new leaf ... We're walking every single day. I changed up my work schedule and my respite schedule to accommodate the exercise. It HAS to happen. I didn't walk three days last week and I'm still paying the price with stiffness and soreness. Not happening again.

I'm off to church, then grocery shopping. Blech! That's money down the toilet ... literally! Have a great day and may God's angels watch over you and yours,

Much love and joy,

Karen

Has your 20-year-old moved out yet?

2010-08-27T06:41:00.000-07:00

Good morning everyone,

It's another gorgeous day! I pray that you are feeling good and relaxed today. I offer prayers for your school year as your child gets ready to begin. My son has one more year of homeschool so we're gearing up as well.

I went to dinner with some friends the other night and one of them was a woman I hadn't seen in a while. When she asked about my family the first and only thing she asked was, "Is Ryan at home?" Initially I misunderstood the question and gave her a strange look because I'd never leave Ryan home alone. Then I said, "He's at his grandma's house." She looked a little puzzled. Then it dawned on me.

This woman had been a school counselor for years and was still buying into the whole disabled track. What I mean by that is "Your child must be in Special Olympics" "Your child must have a full time job" "Your child must move out at 21," etc.

I've never really followed the norm. Remember my post on being a road crossing mommy duck? I bought into that at first, but then realized I needed to concentrate on Ryan as an individual with personal tastes. He didn't want to be in Special Olympics, he didn't enjoy those particular sports. He wanted to explore the arts.

He didn't want a full time job lifting boxes or sweeping up. He wanted to work at the game reserve, regardless of pay. He's only twenty so we haven't talked a lot about moving out but we LIKE living together. It's the two of us and the dog. We scrapbook together, watch bullriding, we love fishing, outdoor movies, festivals, gardening. We like spending time together. His quality of life is awesome right now.

We're in the process of getting the house just like he wants it. Down the road I might move out and a new caregiver move in. We don't know. Right now, we're very happy.

My point here is this: Don't let others views of how your life should be dictate what you do with your special needs child. Do your own thing. What might be fine for one child will NOT fit another. Listen to your young person. Find out what THEY want out of life and give them the power to decide those things (within reason of course!) That's also one of the strengths of the IRIS program, by the way. It allows people with disabilities to break of that tracking stereotype and be themselves.

One of Ryan's favorite stamps says, "Be Yourself, There's Nobody Better Qualified."

Have a great day and may God bless you richly as you start a new year of school and activities.
Much love and joy,

Karen

Reading to your child with special needs

2010-08-26T07:21:00.000-07:00

Good morning everyone,

Another gorgeous day and I can't believe I have to work! See ... even when you work for yourself you have to work on the nice days. I'm tempted to blow it all off and work on the weekend when it's sticky and icky but .... the childcare is arranged, the work is calling my name ... I'm stuck.

We read books to Ryan. As he gets older he likes to hear more involved stories. Grandma's voice is deeper and he can hear her better so she does most of the reading. Lately, because of Mickey's Scrooge story, Ryan has expressed an interest in Charles Dickens.

We thought he'd hear a little and be depressed by it, I know both of us were, but he likes him. Go figure. So my mother, God bless her heart, is reading Oliver Twist, Great Expectations and various other Dickens classics to him now. I get to read the fun children's books. Who knows? Maybe because Oliver is experiencing circumstances more dire than Ryan's disability he feels lucky and good about his life. I'll never know what appeals because Ryan isn't capable of articulating that.

If you are interested in reading classics to your child with special needs, like we do, you can find children's versions at Michael's. They have little hardcovers of Swiss Family Robinson and tons of other classics for only a couple of dollars each. The stories are awesome.

When we read something like that to Ryan, there is a trick involved. We have to translate into easy English the entire time we're reading. It's a little irregular to be reading something and have your brain translating the more complicated words ahead while your mouth reads a few words before it. I know, it sounds hairy, but once you try it you'll see what I mean.

Dr. Seuss, which has wonderful lessons, is another one we read. The Lorch saves trees, Star belly sneetches teach the frivolity of keeping up with the Jones or any kind of division be it religious, cultural or skin tone. There are so many AMAZING books out there. Reading opens up an entire world for our children. Even if they struggle to read or can't read at all, we can. It's our duty to read to them, daily if possible.

Let me know if you read any good books to your loved one!

Just a reminder, I'm still taking names for the drawing on Friday. The autism tape will be given away at the end of tomorrow. Contact me at Karen's GiveAway with your name and email so I can contact you in the event that I draw your name.

Keep watching ... my book Children of Light will be out this fall and I'll hold some giveaways with that one too.

God bless,

Much love and joy,

Karen

Sunday Brunch

2010-08-25T06:12:00.000-07:00

Good morning,

Don't those chocolate chip belgian waffles look good? They were Ryan's selection this week at Sunday brunch. Yum.

It's a routine in our family to have Sunday Brunch after church. We either make brunch at home or go out somewhere. Since routine is doubly important for Ryan, our tradition of brunch has a stabilizing effect on his demeaner, a calming effect.

It doesn't have to cost a lot of money, just getting some family together for an hour or two after church does it. It centers both of us for the week, reminding us that family is important. Brunch is never the production that Sunday dinner is. Bacon and eggs, pancakes or something equally easy, combined with a little fruit and you're done! No muss, no fuss.

Consider starting a brunch tradition with your family. There's just something about sitting down to a meal together after attending services together that truly gives you focus.

God bless

Much love and joy,

Karen

Sock Pulling Independence

2010-08-24T07:31:00.000-07:00

Good morning everyone,

Just in case you're like me and you haven't seen one of these ... it's a sock puller and it is AMAZING!

For years Ryan and I have struggled with his socks. He can't put them on himself very well and as he's gotten older the pulling has become more difficult for me too.

Enter .. the sock puller. I got one when I had my hip done from the hospital Occupational Therapist. It has changed our sock pulling lives. The one above is Ryan's and he LOVES it. Finally he can get his socks on ... or at least he's trying. We're working on it.

It looks like it wouldn't work, but it soooooo does. They're only about $15 and worth every penny. You can get them at Lehman Drug downtown or at any durable medical equipment store! WOOT!

At any rate, that's my equipment recommendation for you. Viva la sock independence.

Much love and joy,

Karen

Finding a Job

2010-08-23T05:57:00.000-07:00

Happy Snake Day,

No, it's not a holiday, merely a happy day that bears marking for my son. Ryan loves snakes, always has and he works with snakes in one of his jobs. Cleans tanks, handles them etc. Who knows? Later the skills may transfer to pet stores, right?

We're in no hurry. He's only twenty, and is about six in cognitive years. That means he's still learning a lot through play and experience. He'll work he whole life but for now, I want him to find his bliss.

I hate the "standard" questions. I buck when people ask "Is he working?" Well, yeah, but not in a typical school-assigned job. He's working as a mascot, as a snake tank cleaner, and various other small jobs that all add up to a fulfilled life. He's busy in choir, best buddies, church, and UCP teen group, but he's not interested in Special Olympics. Not every kid is a sports nut, why should every special needs kid have to be, right?

We're working on being creative with work and leisure. Ryan has a number of hobbies that I'm trying to dovetail with his work. Isn't that what we all want.

I guess what I'm saying is don't fall into the trap of letting the school always pick your child's vocation. It's great to get help if you need it but also get a job your child wants. Take your time and be creative.

Until tomorrow,

Much love and joy,

Karen

Prize Give Away -- Including Students with Autism in their School Community

2010-08-21T06:44:00.000-07:00

Good morning,

I gotta tell ya, we're about beaned out. Ryan's green beans did so well that most days we were picking (and eating) a pound of beans for dinner. It slowed down for a week while everything rebloomed, then whap! Beans again. I love them and so does he but at this point a nice serving of carrots would taste good.

How is everyone doing today? We're okay. August is a lazy month for us. Most of the festivals are winding down and Ryan has sensory issues with bees and bugs so fall isn't our best time to hang around food. Probably a good thing in my case.

Ryan really doesn't like bees at all. We used to own a Chevy Prizm, which I loved. It was a 2002 and the doors didn't have all the new fangled technology so wouldn't "lock" while the car was in gear. I lived in terror that Ryan would see an insect in the car, think it was a bee (he thinks everything is) and literally get out of the car at 55 miles an hour.

Since the car was not meeting our needs in other ways (size wise) I had to get a new vehicle. It was time anyway. I love the new one. It's a Buick Rendevous SUV and the doors lock the minute it's in gear! I need to install a hitch to haul bikes, but at least we'll be able to haul them! It also has lumbar support for Ryan's back and ample room for him in both the front and back seats. So far, we love it.

The Prizm was a compact and this is a mid size SUV so for the first week I felt like I was up-high driving a dump truck. The ride is smoother than our little car and when I get in traffic I don't feel like a bug to be squished. I can run with the pack. I can also SEE over other cars! I can SEE traffic, I can SEE signs over the huge SUVs in front of me. All in all a good buy. I haven't had a car payment in ten years, however, so that part was a bummer. I just feel good that I have something that fits our needs better.

I never thought I'd have to buy a vehicle to fit my son's needs, rather than something I just preferred. But then, I didn't think my life would be this way either. Sometimes I grieve for the life that might have been. Most days I'm grateful to have learned a more graceful way of living. It's a trade off, I guess.

I have a give-away PRIZE today. I'm offering a VHS tape called, "A Sense of Belonging: Including Students with Autism in their School Community." It's a tape I received a number of years ago at a conference and want to give to someone. Leave a comment OR contact me by clicking on this link A SENSE OF BELONGING to throw your name in the hat. Please leave your name and email addy so I can contact you. I will draw for the prize next Friday so you have a week to contact me.

Have a great week and watch for more prize giveaways in the future.

Much love and joy,

Karen

2010-08-20T07:15:00.000-07:00

Good morning everyone,

It feels like it'll never quit with the rain doesn't it? Hope the snow doesn't come as frequently this winter! Yikes.

I'm planning menus this morning and that's always a trip. Ryan will only eat certain foods. Let me rephrase that. He'll eat anything I set in front of him but he can only eat certain foods. My appetite has changed as I've gotten older so I want things like soup, you know? Soup is a tough one for Ryan you know? And so, I end up making what he can have and they just aren't my favorite foods.

We've been eating out a lot because we can accommodate both of us but it's not good for either of us. I have to say that restaurants are doing a better job of offering some healthy choices. How do you accommodate different food needs?

A friend of mine adjusts for gluten. Another friend for gluten and casein both. Many people adapt for sugar etc. How do you not make supper a three hour endeavour? Between planning, prepping, eating and cleaning up two different meals (or more in some cases) how do you not run from 4:00 until 7:00 p.m.? Or do you feed everyone the special diet to save time?

Well, I'm off to get organized for the week.

God bless you and yours,

Much love and joy,

Karen

Vacations

2010-08-19T08:59:00.000-07:00

Good morning,

I can't believe summer is winding down! I'm ready for fall but time just flies by. We didn't get a vacation this year, we had to rebook. It's nice to know we're all set in the future but I missed taking some kind of vacation this summer.

We usually hit Wisconsin Dells for a week if we're not going further, or the lake shore. It's always ten degrees cooler at Lake Superior.

Vacations are always such planned events. Deaf equipment for the room, accessibility in all things. It takes longer to find a hotel that has what we need and then to plan for it. We found a place in the Dells but it changed ownership and went downhill. Now we're looking for a new resort that doesn't cost $300 a night.

It's one of the reasons we're heading to DisneyWorld this year for Ryan's senior trip. It has the accessibility we need, without a lot of hassle. If you've been there please let me know if there is anything that can help Ryan have a good time.

Have a great day,
Much love and joy,

Karen

A Typical Day

2010-08-18T06:05:00.000-07:00

And I thought my house was small! This little gem was at a museum we visited. I'm sure the shingles are new but the house itself was old-shored-up. That's kind of how I felt after my hip surgery! Old-shored-up! My aunt Elaine is fond of saying that we have to get older, we just don't have to get old. I'm still pondering that.

How are you this fine, cloudy day? It looks like rain again and I'm hoping that the sun will peek out soon. Ryan has his massage today. He's due too. It makes such a HUGE difference with his muscles, his sleep and his general well being that we've scheduled a weekly massage with his therapist. Well worth it, I'd say. He's just so much more comfortable all week long. Check out Sans Souci massage and tell them I sent you.

Things are better today. Ryan's "person" got on board. I have nothing against young kids but they sometimes just don't understand the pragmatics of life yet. They try hard but there is a general lack of understanding on how the world works. The wisdom just isn't developed yet. They haven't lived enough. They haven't built houses, worked in full time jobs for years on end. They haven't dealt with major medical in any real sense of the word or even benefits packages. It's hard for them to grasp the realities of raising a person with disabilities. They think do-it-yourself and that's not a reality for people with disabilities. At any rate, things are sorted out and I'm on to the next project.

Ryan looked exhausted yesterday. That happens with his Cerebral Palsy. He just gets to a point where his resistance is down and he needs a day of complete rest. It happens less often than when he was in regular school. It's one of the benefits of homeschooling. I can catch that and call the day a rest day. It's prevented him from crashing with major illnesses in some cases.

We're getting ready for the school year. We don't start until mid September. Which is a laugh. The paperwork claims that you must teach over 700+ hours each year. Try 24/7. When you homeschool you grab those teachable moments. At any rates, we always start with Ryan's bird hobby in the fall with migration so we'd better get out the notebook. His two banded birds at the game reserve must not have returned to the same nesting spot last spring because he didn't get a call.

I'd better get out of my cyber life and get back to my actual one. Take care and see you tomorrow.

Much love and joy,

Karen

Random Emotions

2010-08-17T05:52:00.000-07:00

Good morning,

How are you this fine summer morning? It feels like fall to me. I've been feeling that way the last week or so, even when it was hot and sticky. The light has changed. It's lower already. The days are getting shorter and my body actually has a physical response to that so I FEEL the change.

I'm short on time this morning. I have a zillion things to do. Ryan and I hit the outdoor theater last night. It was a gorgeous night for it. We watched the Adam Sandler film, "Grown Ups." Typical Sandler. 70s music, same cast as always, bathroom humor and a thread of plot. At least it was about something and that's saying something, no matter how he got there. You can tell that he's gone all Hollywood. There's so much sexual innuendo in all films today. It just gets old. There's nothing fresh or creative about it, you know? It's a sell out.

Ryan has teen group today and they're bowling. He's so excited. He loves to bowl. This is the kind of activity these kids don't get to do very often. It's a regular kid fun activity. Barb and Warren do an amazing job with it.

Unfortunately, I'm putting out some disability fires today. I can't write about it yet because I'm angry. It wouldn't be fair to use words as weapons. I need to get past it then I'll share with you. I know that blogging is somewhat like regurgitating on the page but sometimes we don't really have the perspective we need to be helpful to others and I really do want that perspective. I want to be helpful. If I'm not, if you don't feel like you have a friend, then what's the point, right? Blogging is a form of navel gazing anyway so I don't want to take that to a level of spewing when I'm angry. Random emotions can hurt people. I'll let you in, dear reader, when I'm not ready to do a poison pen number.

Prayers dear reader that you won't be dealing with "the crud" at 6:30 a.m. like I was.
God bless you,
Much love and joy,

Karen

Dogs Before Children?

2010-08-16T06:02:00.000-07:00

Good morning!

And I mean that literally! It's gorgeous out there! We slept with the windows open and I told Ryan, "Sleep in tomorrow. It'll be a good morning for it." Then I got up to let the dog out, saw how beautiful it was and couldn't stay in bed!

There is a very distressed squirrel outside my window today. Funny how, as mothers, we can recognize distress in nonverbal ways, no matter what species it is. I don't mean funny ha ha either. It's upsetting to hear an animal in distress. I can't see it so I don't know where it is or what's wrong with it.

I read an article once where a woman living in California was attacked by a mountain lion and killed. She left behind two small children and a husband. The residents in the area held a fundraiser to save the lion and raised $10,000. A fundraiser was held for the mother and raised less than $1000. I think our priorities get a little screwed up when the welfare of children means less than the welfare of a predator. It's sad really. Who are we, as people, when grace doesn't extend to our own species? How have we put the dogs before the children? They are just as vulnerable, just as much, if not more, in need?

The next time you get ready to donate money or time to the animals, think. Go ahead and do it but then donate time or resources to a children's charity as well.

God bless you and yours,

Much love and joy,

Karen

Need a Speaker?

2010-08-15T06:22:00.000-07:00

Good morning!

We grilled out last night, which was amazing because it wasn't raining and it wasn't horribly hot and sticky. It was warm and sticky but definitely doable.

Here's my big guy making S'mores. This summer is the first one he's mastered standing that close to the grill and holding his own marshmallows. A Kodak moment, wouldn't you agree?

It's funny how odd generalization can be. I wonder sometimes if the general "safe" feeling of the fence has encouraged his bravery here. If he feels protected enough to try, you know? Whatever it is I'm pleased as punch that it's working.

I decided to start a book club at church that begins in September. We're going to read Joyce Meyers' How to Hear From God." I've read it before and absolutely love it. I asked a friend to co-lead with me. That way if anything medical comes up I've got someone to take over a meeting. Funny all the contingencies we have to put in place when we're caregivers.

My first book, Children of Light, will be out this fall. It's the story of me raising Ryan in faith. Some people said I needed to tell Ryan and my story without the faith part, but without it, there is no story. It's that simple. I hope it's not didactic and that people gain strength from it. It's the book I wish I would have had when I was raising Ryan. I'll let you know when it's available. I'll also be taking more bookings for speaking engagements at churches and women's groups as well as writers groups etc., so if you need a speaker let me know.

I also speak on other writing topics, faith topics and disability topics as well as early educational issues. Now that my hip is under control I feel like I can get back out there.

Well, I'm off to church. Take care and remember, I'm praying for you.
Much love and joy,

Karen

Extra Blessings because of a Butt Head

2010-08-14T06:57:00.000-07:00

Hello,

How are all of you this morning? It's nice to have the windows open. I make sure I do that every morning unless it's raining--which seems to be all the time lately.

Okay, so I know I went on a rant yesterday but I'm ranting again today. Get this. Ryan and I went grocery shopping at Festival. He's pushing two weeks worth of groceries out for me because I'm still using one crutch. We're hobbling along, smiling, glad to be done with our shopping. Ryan has trouble controlling the cart sometimes but like to steer it anyway.

We're in the crosswalk going toward our car which is parked in the first space, just over this cement "hump" they have separating the parking spaces from the drive area in front of the store and a car is coming. I look at the driver and she looks me dead in the eye. She's probably 65 years old, as is the woman in the passenger seat. She doesn't stop.

Ryan looks up, and panics. He tries to hurry and hits the cement median with the cart, jamming it into his abdomen, with was just surgically repaired, thank you!!! I'm trying to keep him from running, but I'm hobbling on my crutch. I'm telling him, "Ryan, she HAS to stop for us," and he's nearly running into traffic now. I gazed directly into that car and said the B word right to her.

Yes, NORMAL people would just saunter and dare her to hit them, a law suit waiting to happen. What chapped me was that it was sooooo deliberate. We're headed toward a disabled parking spot, Ryan has bright colored hearing aids and is obviously having trouble with the cart, I'm on crutches. I'm telling you now, if I could've gotten her license plate I would have called her in then and there.

Ryan was so upset in the car I didn't think he'd ever get over it.

Why? Why are people like that? I'm a positive, optimistic person but there are days when my heart breaks for my son and I want to rage at the world. It doesn't help to rage, so I rant to you, dear blog readers. I know that you understand exactly what I'm saying.

I keep remembering the Bible verse that says when someone treats us poorly, or curses us, we receive extra blessings from God. I set my hope in my faith and take a deep breath. I know that something better is waiting on the other side.

We went out for rootbeer floats and took a drive. Ryan likes riding in the car and gazing out the window. It's kind of one of his "things" so we work it in. It calmed both of us down.

Today I pray that you are blessed richly each time you feel a kick from someone in this fallen world. I pray that you find calm, quiet moments that give you happiness and peace.

Much love and joy,

Karen

A Rant about Underwear Colors....

2010-08-13T06:15:00.000-07:00

Good morning,

I gotta tell ya, I'm bushed! I woke up at about 4:30 when the sirens went off. I was up about fifteen minutes checking the weather and my son. Then, just as I was dropping off the sirens went off a second time. Well, by then I'd had just enough sleep so I wasn't going to be able to go back to bed. Essentially, I've been up since 4:30. Now, at 8:00 a.m. I'm tired. The bed is made, I'm showered and ready for the day and NOW I could sleep. The irony of it all!

I had to buy underwear the other day and I have to ask ... WHO is in charge of picking the colors for women's panties? Are they colorblind or just misogynistic? What gives? Every pack was hideously colored. I finally found a pack with a yellow pair, a pink pair and a third pair that was a mix of the two. That yellow, however, was a yellow I'd only ever seen in baby poop. Euwwww! I threw them in the cart anyway and it just ticks me off. I don't want eggplant or fuchsia underwear. I want white with pink flowers, or yellow flowers. I want Easter egg colors that are sunny and cheerful but don't show through my light summer clothes or color my laundry. Is it too much to ask to at least have options??? If you know a good store to buy those kinds of panties I'm all ears.

hmmm. Just a rant about panties today I guess.

God bless and keep you safe with all the rising creeks and rivers,

Much love and joy ... and decent panties!!!!

Karen

Who are my Stand-by Guardians

2010-08-12T06:13:00.000-07:00

Good morning everyone,

Today I want to touch on guardianship. Getting guardianship of a vulnerable adult is never easy. First, you have to proof that they are not capable of running their own lives and it's more difficult than you think ... FOR YOU!

It's not hard to get a guardianship when someone needs one. That's the easy part. The hard part is stripping away someone's rights, especially someone you love. Making it easier is having people you trust to make decisions with both their heads and their hearts. It's imperative that you choose your stand-by guardians carefully.

Our stand-by guardians, pictured above, were chosen for a number of reasons.

They know and care about Ryan
They have spent time with Ryan
They are people of faith
They have children so understand that not everything is okey dokey just because your child doesn't tell you about it, they will remain vigilant.
One parent is a medical professional so can handle medical challenges that come up
They are friends and care about my peace of mind as well.
They will include Ryan's uncle in decision making.

Well, there are plenty more reasons to numerous to list here. I'll touch on guardianship again and all the facets of the issue but today I just wanted to briefly chat about stand by guardians.

Don't just list someone, and don't assume family will consent to be guardians, ask someone specific and have reasons why you are asking them. If they don't know that the system requires that your loved one have an advocate then they aren't right for your child.

Make a list of what's important to you and talk to a variety of people. People who constantly say to you, "I don't know how you do it" are not good options. They're overwhelmed just watching someone advocate.

You, of course will have your own set of criteria, just remember to be picky. This is your baby.

Good luck and prayers for a safe and healthy outcome,
Much love and joy,

Karen

WIth all the rain I feel like a duck!

2010-08-11T06:11:00.000-07:00

Good morning everyone,

Ryan went fishing yesterday with UCP Teen Group. No one caught any fish but he had fun anyway. He was exhausted at dinner though. The heat takes it out of him and he was almost too tired to eat. He has a massage today and that will help get him back on track. Fatigue is such an issue for him. One of the perks of being profoundly hard of hearing is that he'll sleep through most storms. It's both good and bad of course. Good when one of us is around to wake him if need be, bad that he wouldn' hear a warning.

I'm torn on a bed shake alert for him. When we hooked up his Internet we got him basic cable (up to channel 22) so he'd have weather warnings on the local news. It's his right to know. When I'm around, unless it's really bad outside and I envision a trip to the basement, I let him sleep.

How do you prepare for storms with your loved one who has disabilities? What about people who use wheelchairs? How do you get to the basement? Ryan has such an unsteady gait that I'm going to put a stair lift chair in. I have to figure out who does that but I'm determined that he get into the basement safely. He's too big for me to carry or even help down easily so the chair becomes more necessary each year.

I'm tired of the rain. I want sun and 80 degrees. Selfish I know. We're so blessed! I look at the middle of the country with temps in the 100s and indices near 115 and I thank God that we're this far north and have 70 degree nights. At least we can be outside!

If you're bailing out from the rains last night I send up a prayer that clean up goes well for you. Remember to check the roads if you're driving. Many washed out last night. As I told my cousin when she drove through water over the road, "It's not JUST that the power of the water could move you, but there may not even be a ROAD under there, the water could've washed it away already ..." Hopefully, it's food for thought.

Have a dry day,

Much love and joy,

Karen

Back to Homeschool

2010-08-10T06:03:00.000-07:00

Fall is only a few weeks away and I'm feeling a little blue. I love summer, even hot, sticky ones. Don't get me wrong, I love autumn too, I just lament the passing of time so quickly. It goes so very fast.

School is starting and Ryan graduates this year at age 21. I have to get going on curriculum and plans for the year yet. We don't start until mid to late September so I have some time yet. I love homeschooling and maybe that's one of the reasons I feel regret. This is our last year of it. Although I'll be teaching Ryan his entire life (and reteaching), there is still something about your child really reaching adulthood that makes you a little sad.

Ryan was in the public school from age 3 through Middle School. See my column, Life on the Exceptional Side, this month in Family Times for 10 Tips for Back to School for children with special needs. It's available now in stores.

When High School came the school district just couldn't meet his needs. Even with an IEP, he was losing ground so I decided to homeschool. It meant giving up a number of things on both our parts but we both consider it a spectacular success. Ryan has gained so much confidence and has so many more community relationships than he would have had he stayed in a traditional school.

Homeschooling isn't for everyone. I knew a woman who, when her daughter was having trouble with teasing in school, decided to homeschool her. The girl was in middle school and did not have disabilities but her mother thought it would be a snap to teach her at home. I asked which curriculum she'd decided on when she told me about it. What curriculum? She'd just wing it, she said. Two weeks later they'd gone to a play in the name of homeschool and discussed it. Needless to say, the little girl ended up back in traditional school.

One of the criteria for homeschooling is commitment. You commit to it and NEVER threaten with traditional school if your child wasn't happy there. You commit to teaching and prepare yourself with curriculum (even if you write it yourself) as well as planned field trips, volunteer activities and various other "classes."

I wrote goals for Ryan. Albeit some didn't have "measurable" outcomes like the school-required IEP but that was actually one of the strengths of teaching at home. I could have confidence building as a goal and measure it by how Ryan responded to situations on a "I think he improved: type of scale. It took a lot of pressure off of him, especially when some of his goals were so amorphous.

IRIS was a big help in getting Ryan integrated into the community. Once he turned 18 we could plug him into all sorts of activities that we couldn't when there wasn't funding.

At any rate, as you begin the school year know that you have options. It's important to always think of your child and his or her needs but also, think about what you're able to provide. If you can't teach then don't homeschool. There are other ways you can help with your child's education.

Have a great school year and see you tomorrow,
Much love and joy,

Karen

Just a chat

2010-08-09T05:27:00.000-07:00

Good morning,

I took this close up of beans because it seems like it's an image that is typical of this time of year. We've been a little consumed with produce since it's our first year with Ryan's horticultural beds. I haven't gardened since we lived in the country so it's all new to me again.

It's been a bumper crop year. We're picking tomatoes and cukes now. Heavily. Both cherry tomatoes and larger ones are coming in faster than we can eat them. We're getting about six to eight cucumbers each day from two plants. It's crazy!

I have to admit that I miss the drought summers. I know that's not a good thing to say, especially after the great garden bounty we've gotten this year but I'm so much more comfortable when it's dry. 85 degrees is great when it's dry. 68 is uncomfortable when it's sticky. Still, I open the house each morning to get the fresh air, although I'm not sure how fresh it is, into the house.

Ryan is fishing this week for UCP teen group. He LOVES the activities that are outside and summer-like. I hope the weather is decent for them.

I'm rambling today. Most days I have a point. Some days I just want to chat with you a little. Take care and have a great day.

Much love and joy,

Karen

What is a Godfather?

2010-08-08T06:53:00.000-07:00

The little gal in the photo is Ryan's goddaughter. Isn't she a cutie?

It was interesting to see how that all played out. Ryan was chosen as an "honorary" godfather. The supposedly "actual" godparents were a friend of the mother's and a cousin. The interesting part is that even though the grandmother is fond of reminding me that the position is merely honorary, Ryan's faith has insured that he take it very seriously.

I don't want to use the little girl's name for safety reasons so we'll call her Babygirl. Ryan gave her a book of prayers, a number of books on church holidays and various veggie tale movies. He models Christian behavior and prays for her at every opportunity. He visits her and I can guarantee he'll be at concerts, sporting events and Sunday School programs.

I'm sure the grandmother was thinking of guardianships when she made the distinction, but being familiar with guardianships she might want to redefine that word. Godparents no longer take children when the parents cannot care for them anymore. You need legal documentation and a baptismal certificate isn't going to cut it in a court of law.

At any rate, Ryan has cared for Babygirl to the best of his ability. God has received Glory because of Ryan's efforts and I'm proud of him. Honorary or not. Besides it seems that, at minimum, parenting of any type should involve honor. Right?

Enough of my rambling. Have a wonderful day and remember to keep cool.
Much love and joy,

Karen

We Reap What We Sow

2010-08-07T06:11:00.000-07:00

We took a road trip to see friends last night and I couldn't resist snapping his photo of the hay field. I love the round bales sitting in the fields reminding us that fall is coming.

The funny thing is that hay comes in all summer but when the bales are sitting like this with no one frantically storing them to get in the next crop it's reassuring. The seasons are moving as anticipated. There is abundance in the harvest.

What kind of harvest will we get from our children? Are we sowing seeds of love, of kindness, of wisdom? Are we planting and nurturing saplings of charity, courage and caring? Are we watering them with security, humor and hugs?

Are you teaching the idea of giving? My father used to say, "Why make others pay for something they need, when you no longer need it." Are you squeezing every last dime out by selling every item at thrift sales ... or are you giving generously to various causes like the homeless, the missions, the refuge houses. Are you teaching that those items don't have value in the long run, that they are merely things?

Something to ponder as we start the season of harvest. We reap what we sow.

Have a wonderful day,

Much love and joy,

Karen

Senior Photos for Kids with Disabilities

2010-08-06T08:07:00.000-07:00

Good morning,

I have to look at getting Senior pics taken pretty soon and I'm dragging my feet. I don't know why. Maybe because it's become this big production. We had one or two outside poses and one inside pose when I was a senior and we wore the same thing the entire time. In fact, outside poses were cutting edge. It was the 70s, what can I say?

I've been asking around and I've found a couple that I'm thinking about. Ryan has an awesome smile if you can catch it. I'll do the outfit change thing with him. He'll have one with his medals from Special Olympics, another with his mascot outfit, some outdoor, a formal indoor, perhaps a few others. Anyone have any ideas? Any good picture takers with kids who have disabilities. I found one in Mondovi but I guess she's real busy so I'll have to call and see where we're at. I want to call around for prices too. ERG.

Any ideas are appreciated.
Thanks,
See you tomorrow,
Much love and joy,

Karen

In the Right Place at the Right Time

2010-08-05T06:07:00.000-07:00

Good morning,

I hope today finds you happy and full of hope. We have a lot of tasks to get done today but I'm tempted to blow them all off and go fishing or geocaching or something fun in the outdoors. It's going to be 80 degrees and sunny. A PERFECT day.

We drove out into the country last night, away from the city lights to admire the northern lights. That was fun. The Perseid meteor showers are visible too. Neither get old, but are absolutely amazing. I've been watching both since I was young. One of my brothers and I used to go out and lay in the fields at 2:00 or 3:00 a.m. and watch until nearly dawn. We lived in the country so could just walk away from the house and see it all. There's so much urban sprawl now that it becomes more difficult to get away from the light pollution.

Ryan loves the northern lights so we'll probably head out again tonight. I hope it's clear. If you live in the northern climes you'll want to get out and see them.

When I was in my 20s or early 30s I was traveling down Hwy 61 along the MN side of the Mississippi when the northern lights started up. Cars pulled over by the dozens so we could all get out and look. It was the most spectacular display I'd ever seen. There were whites, greens, blues, pinks, indigos ... the best show ever. I'd never seen anything like it before ... or since. We were in the right place at the right time.

I have a talent or a gift for being in the right place at the right time. For example, do you remember the Evander Holyfield fight that was a KO in the first round for the championship? I was in a hotel room at the time, channel surfing and buzzed onto a station that carried the fight. The bell rang, he knocked out his appointment. I remember saying to the person with me, "Huh, look at that. It's round one and that guy just won." I then proceeded with my channel surfing. The next day it's all anyone could talk about. I'm not a big boxing fan so it didn't make an impression until I found out how many people had rented the fight, gone to the bathroom and missed it.

In order to be in the right place at the right time, however, you need to BE there. That means you need to get out of the house once in a while, right? Go hiking. Go to dinner. Take a walk. Go somewhere so you can experience new sights, sounds and sensations. Who knows when you'll be in the right place at the right time?

Take care

Much love and joy

Karen

Our Obsession with Paul Bunyan

2010-08-04T07:21:00.000-07:00

Good morning everyone,

It's a gorgeous day outside, now if the sun would peek out we'd be set!

Ryan had a wonderful time at Teen Group yesterday. Paul Bunyan logging camp is one of his favorite places to be. We visit frequently, sometimes just to have lunch while he sits in the car and admires the statues of Paul and Babe. We've been doing that since he was tiny.

One day, when we were lunching our picnic and viewing the dynamic duo from our car, a mother and child of about nine years old got out of a van. The boy looked and looked while the mother smiled indulgently. Immediately I knew that he was someone with special needs as taken with Paul and Babe as Ryan is, and has been since he was younger than the boy at the park. It was pretty obvious they'd been there before.

I wanted to get out of the car and talk to the mother but I can be shy. What was I going to say? "Hi, I see your kid is as obsessed with these two as mine?" That'd go over well. Plus the kid would probably bolt and then she'd have a larger problem.So I stayed sat and marveled that someone else was on the same byzantine path that I was. I smiled that some other mother took the time to visit Paul repeatedly. (like we have a choice, right?)

At any rate, Ry purchased a small silver bell with Paul and Babe at the top, one of those souvenir bells, had ice cream at the attached museum and in general had fun. Unfortunately, there weren't a ton of kids. Do think about registering your young adult.

Have a great day! Much love and joy,

Karen

Ryan's Hearing Aids and Stuttering

2010-08-03T07:29:00.000-07:00

It's going to be a fabulous day to get out and do something outside. Warm, sunny and August-y! I have to work so I may quick run some errands then shift my hours to be in during the heat of the day. One great thing about working for yourself is setting your own hours. Besides, with my vitamin D shortage I need to get some sun.

I knocked my laptop onto the floor this morning. The flash drive for the mouse was twisted and hanging out in components like the Terminator's arm in miniature. I may not be able to use that port again. Oh well, as long as the computer works I'll happily shell out another $20 for a cordless mouse, right? Just be aware that this post may have random edits. I'm not real talented with the mouse pad.

You may have remembered me talking about Ryan's new hearing aids that convert high frequency sound into a frequency he can hear? Well, a side effect of that conversion is that the air flow when he listens to his own voice is disrupted and he's started blocking and stuttering horribly again. (It's always been tied to ill fitting hearing aids in the past). So ... what to do?

I love that he can hear more sounds but at what expense? The new aids are blue tooth ready too so when he wears the boot around his neck he can just tap it to answer the phone or turn on the FM. It's really a wonderful set of hearing aids. However, self esteem is just as important. The blocking and stuttering bother him and erode what little confidence he has. I'm thinking of switching back to the old aids for a while, just to make sure he understands it is the aids that are affecting his speech because of weirdness in hearing himself. It seems like it's always something.

Ryan is with G'ma today. They're doing some fun stuff together and then he has UCP Teen Group at the Paul Bunyan museum. He was hoping for pottery at Destiny Artworks or other stuff rather than the "school stuff" they have planned this year. THey had a middle school teacher in for art, another in for music and now the museum. Ryan was hoping for pottery, Action City , swimming and a few other items that are more active. Enrollment has dropped for teen group which is too bad. It's a fantastic program. They go bowling, which he loves, and fishing next. THis year they're having a family picnic which is too bad. Our kids spend so much time with us anyway. I wish it was just for the kids. How can Ryan come home and tell me about his day if I'm there too? I think the thought is so sweet, just maybe a little clueless.

Have you noticed how there is always this "get the family involved" mission with all groups? As though we're not involved FULL TIME? I get a kick out of the mentality that family time is precious like it is for a normal family. People who have children with disabilities have family time ALL the time. Our kids crave getting away ... although I digress! I'm rambling here, right?

Have a great day! And I'm sure that UCP would welcome a few more bodies at teen group. Give them a call and ask for Barb or Warren.

Much love and joy,

Karen

Friends are the Umbrellas in the Storms of Life

2010-08-02T07:25:00.000-07:00

It's raining again, so I thought I'd post a card I'd made that says, "Friends are the umbrellas in the storms of life." I like that sentiment. I don't know about you, but I'd be lost without my friends. The hard part is maintaining those relationships when you're a full time caregiver.

Relationships take time and effort. Telephone calls, lunches and hobbies are all part of hanging out but we tend to put ourselves on the back burner. Everyone elses needs come first. I'm not saying that's wrong. If my kid needs something I'm not going to flake out on him and head to a movie with a friend. It's not how I'm built. Call it a strong work ethic or a passion for family. It just ain't happenin'.

So how do we nurture friendships? How do we find time to go to lunch, head to a thrift sale, take in a movie? I honestly found that I could combine my solitude and my need for a social life in scrapbooking. I love it. I make cards at home and then get together with friends to stamp once in a while. It helps me nurture myself.

I signed up under a friend and became a demonstrator for Stampin' Up! scrapbook and stamp company just so I'd get out of the house. We always get out of the house to work, don't we? The thing was, it didn't feel like work because I loved doing it. Not only that I did parties for family, friends and other people I knew so it felt like a coffee clutch.

Then I branched out a little. It morphed into the therapeutic scrapbooking that I teach to parents of children with disabilities and into a blog. Suddenly I have online friends who stamp who are almost like pen pals and I belong to online groups. I get together every few months to stamp with other demos. I teach classes on stamping and the therapeutic scrapbooking. I get out!

Because I was seeking unusual ways to socialize, it gave me great insight into what Ryan needed in order to hook him into social situations for friend making. It worked too! Ryan now has a variety of people in his life that are into the hobbies he loves.

It's amazing how far a little creativity can go!

Much love and joy,

Karen

Despicable Me

2010-07-31T04:35:00.000-07:00

Doesn't she look sad? She wasn't but I thought her little face had a downcast look to it. Poor baby! (Poor spoiled baby is more like it.)

Ryan's IRIS consultant is visiting today so we're up earlier than normal. Saturdays are usually a day to sleep in. Lately anyway. I want to sleep more and more as autumn approaches. Come on Vit D!

Ryan and I saw "Despicable Me" at the Drive In movie theater and I highly recommend it. I was so cute. Steve Carrell is, of course, delightful. The villian, Vector, was loosely based on Phil Spector so there was some tongue in cheek humor there. All in all worth our $8 each. Two thumbs up!

We're picking cukes in Ryan's garden. He's having sensory issues with the flurry, picky cuke plant leaves but then, who doesn't? He's braving it though!

Today's post is pointless and short. I'm tired and I have a ton to do so will let you get started on your day too! God bless you and your family. May he inspire you as you care for your special someone.
Much love and joy,

Karen

I'm a Bad Mother

2010-07-30T05:48:00.000-07:00

I lost my temper last night and yelled at Ryan. I feel like the most horrible mom on earth. He didn't deserve it. I was overtired (we'd gone to the drive-in theater) overwhelmed (I had 15 million things in my one hand while the other struggled with the crutch) and he was so unconscious of helping me. I had no right to snap at him like I did and even though I apologized profusely and he forgave me I'm still so angry with myself. Bad mother, bad mother, BAD mother!

We all know that kids can take us to places that we didn't even know existed but usually counting to ten, walking away or other coping mechanisms take over. Our good sense wins out. Once in a while we find ourselves reacting at a gut level and barking at them in a way we wouldn't talk to the dog. The self recrimination and condemnation is hard to deal with afterwards. It makes me wonder about abusive parents. Are they so much MORE overwhelmed than the rest of us? Do they have less coping, less modeling of good behavior, less patience, less ... what?

We don't snap at our kids when we're feeling good, do we? We yell when we've reached a breaking point. So, in abusive families, where is that breaking point? It can't be income. Abuse cuts across all socioeconomic classes. I know sometimes alcohol is involved. That makes sense if we're talking about breaking points. A person who is drinking will have less tolerance simply because all his or her inhibiting skills have gone to zero.

At any rate, back to my scenario. There is no way I can take back the words I spoke (snarled actually ... shut up! Shut up! Shut up!) is what I said. I can't fix this. I apologized, he forgave me ... now the hard part. I need to forgive myself. Why is that always the hardest part?

Have a good day today and give your person with special needs an extra hug. They put up with a lot from us.
Much love and joy,
Karen

Don't forget August!

2010-07-29T08:09:00.000-07:00

I can't believe it's almost August. I love autumn. It's one of my favorite four seasons . I've told you all my three month rule right? June, July and August are summer; September, October and November are fall; December, January and February are winter; and March, April, and May are spring. That's usually where people get messed up. They think of winter as November through April. No, no, no.

Yes, it snows in November, but mainly it's a windy month of wood smoke, bare trees and early evening cozy at home. December is winter. But, we're getting ahead of ourselves. The point I'm trying to make is that often times we "wish away" August by thinking of back to school, autumn and scarecrows. STOP! August is still an awesome month of summer! The entire last THIRD of summer! Keep cooking out, taking road trips and having fun!

I have to admit that August is sometimes a month of Home. Don't you agree? We've taken vacation, we done all the summer activities. August is laying in a hammock, reading. August is watching a late movie and eating ice cream. August is opting for visiting family instead of wild vacations. August is almost a re-centering of our lives to get ready for the busyness of fall and the inward turn of winter.

I love listening to cicadas, locusts, crickets and birds. Even the birds seem less frenetic in August. Have an amazing rest of the summer.

Much love and joy,

Karen

Meaningful Work

2010-07-28T05:44:00.000-07:00

Ryan spent time at his game reserve cleaning snake tanks yesterday. He even watched the snakes eat. He's fascinated by varieties, venom, uses for venom and every little snake fact. He's had the passion for this creature since he was tiny. He visited the reserve and held his first snake when he was three years old!

Interestingly, his hobby has developed into meaningful work. He loves his snake buddies and they seem to like him. Who can tell with snakes thought, right? He's started eyeing the turtle tanks too.

The neat thing is that it all provides context for conversation and shared interests. His grandfather, a biologist and geneticist, would have loved sharing this with him. The woman who oversees him is such an accepting and warm person. She gives Ryan respect and that's saying something. She doesn't hover. I, on the other hand, hovered a lot at the beginning. Now I bring my laptop and work.

Pursue your child's passions. You never know what will turn into a job/career when s/he is older.

God bless,

Much love and joy,

Karen

Life is Good

2010-07-27T05:51:00.000-07:00

Life is good. It is, you know. No matter how much the little things get you down I believe that counting our blessings and realizing what is important is crucial to our happiness.

I have a roof over my head
I have AC in the summer and heat in the winter
I have food on the table
I have family
I have friends
I have a job and hobbies that I love
I have my health
I have my faith.

What more do I need? Count your blessings today. Life is good.

Much love and joy,

Karen

Summer Salad Recipe

2010-07-26T07:51:00.000-07:00

Good morning everyone!

I'm posting a little late this morning because I had a Summer Salad to make and I wasn't about to forget it since it's the only other thing we're having tonight other than grilled steak. Just an economical trick on steak ... choose your steak and have them cut it for you again lengthwise. The steaks are the same size but half the thickness. They cook faster and it's plenty of meat!

Today I'm just going to put down the recipe for that Summer Salad ... Here you go...

Summer Salad

1 box (7 ox) ring macaroni

Bring to a boil with 1 tsp salt and cook according to package directions. Rinse and cool.

Add:

1 med onion, chopped fine

2 cups fresh cucumbers (I use little pickling cukes that are so abundant right now), chopped

1 cup celery, chopped

2 cups grated carrots

1/2 tsp pepper

Dressing:

1 1/2 cup mayo

1/2 cup apple cider vinegar

1 1/2 cup sugar

1/2 tsp salt

Mix dressing with the rest and chill. I make the dressing a little scant because it seems to make a little much I thought. Kids LOVE this salad. Gets all those carrots, celery and cukes down them too.

Have a wonderful day and we'll see you tomorrow.

Much love and joy,

Karen

Visual Learners

2010-07-25T06:49:00.000-07:00

Good Morning!

Don't you love this old fashioned carriage? Doing research for a book I'm writing and had to see one up close and personal. I wanted to feel the wheels so to speak.

Ryan and I love museums. He's so visual. He gets ten times more out of seeing something than reading about it. His senses start working overtime and he's got it.

We try to make his life environment and sensory rich. Bath time is filled with colored light and air jets. Time in the back yard is filled with gardening, playing with the dog and grilling. Day-long road trips are filled with stops to view sites, visit museums and eat different foods. Even though Ryan likes his routine he has an adventuresome side that, when saturated with new sites, will embrace new sights, sounds, smells and sensations.

Lately every time we get a nice day we run. The dog is starting to resent sunny days I think. Poor little thing. We've figured out the area museums and will fit those in on rainy days, unless they're outside museums.

All that to say ... museums are a staple with our children. So many of them learn by seeing.

Have a fun Sunday,

Much love and joy,

Karen

Ryan's First Tomatoes!

2010-07-24T08:25:00.000-07:00

Good morning!

E-mailed my Family Times column to my editor for my column, Life on the Exceptional Side. The column is called Ten Tips for Back to School and discusses some helpful information for approaching the new school year with a child who has special needs. Make sure to pick up a copy. It'll be out around the first weekend in August.

Ryan picked his first tomatoes yesterday. We've been picking about a pound of string beans every day and he's been eating them! Awesome, right? Now he's popping cherry tomatoes in his mouth and we picked our first big ones.

He looks so proud, doesn't he? The item in his right hand is a very small carrot. Since we need to thin those he's been pulling one every now and then. He can't wait until they're big enough to eat.

I can't tell you how these waist high adaptable beds have made a difference in our lives along with the privacy fence. Who knew two such simple things could change things so much for Ryan? But they did.

Here's a shot of the haul. The beans are slowing down so we've not had to worry much about them the last few days but the cucumbers are going absolutely crazy! They're among his favorites to eat so he's thrilled. He was shocked to find out how prickly/fuzzy the leaves were. His sensory issues kicked into play but he had such a mad desire to see the little cukes that he pushed at the leaves, shuddered and peeked under them. Needless to say he didn't hang on long, but he TRIED it! I was very proud of him.

He's so relaxed when we come in. All that weeding, picking and fussing around relaxes him so much! The fresh air and sunshine is so good for him. Ryan has a tan this year for the very first time.

Check out the sandal marks on those tan feet!! He tried scrubbing them until I clued him in on what was going on!

We'll heading out to the grocery store today I hope. I need to figure out what we're eating this week. We've been horrible about eating out. It's so much fun to meet with family and friends for a meal. We've been going out a little too much.

Well, that's it for me. See you tomorrow. Take care!

Much love and joy,

Karen

Rain Rain Go Away

2010-07-23T08:06:00.000-07:00

Rain, rain, go away

Come again some other day

Little Karen wants to play

Rain, rain go away

It's raining, it's pouring

The old man is snoring

Wake him up and put him in bed

Can't get up in the morning

Yep, it's been raining so much I'm weary of it. I want sunshine. Speaking as someone low on vitamin D ... it's kind of essential for me! The odd thing is, when it's sunny I'm almost manic, trying to get as much living as I can in out in the sun! Who knew my body actually craved it?

I have errands on the agenda today. If you have a young person with disabilities you know that this can be an all day job for errands that would normally take only a couple of hours. It's just the way it is. The problem today is that I have some weird intestinal crud going on that prevents me from straying too far from the house. Nuts. It's almost 10 a.m. and I'm still sitting here! I can't figure out if it's something I ate or I'm fighting off the flu. I'm tired, achey and nauseous. I hate being sick. I don't have time for it, you know? Its just so ... inconvenient. So much for most of my errands, right? This is when being a single parent blows. No one to pick up milk and bread. No nap for me.

What do you do when you're sick and alone with your person who has special needs? Do you have someone you can call? Someone who can run out and get groceries or medication for you? It's not as easy calling family and friends as it is to have a mate in the home. That's all there is to it. I'm not feeling sorry for myself, just stating a fact. It is what it is.

Yesterday was a lovely cocooning day. But, I want out now. Hopefully this is something that will pass in the next few hours and I can get out there and get something done.

Gotta scram.

Much love and joy,

Karen

Movie Critique - The Sorcerers Apprentice

2010-07-22T07:45:00.000-07:00

Good morning!

It's a rainy day here and I'm trying to decide what I should do with Ryan. I'm thinking art and therapeutic scrapbooking. We did a lot of horticultural therapy and occupational therapy yesterday. I'm ready for something less active. I think we might bake too. That's a mom thing, you know? Ryan has been baking since he was tiny with his G'ma but he and I typically do other things. We'll see how ambitious I am. We went to the Drive In theater last night and that's a late night for me.

We saw The Sorcerer's Apprentice with Nicholas Cage. Loved Cage, jury is still out on the movie. I liked the beginning but it was pretty dark at the end for Disney. Got into pentagrams and weird crap like that. I would not recommend for children at all. Ryan and I talked about it afterwards and he felt the same way, just a little too dark. We're looking forward to Despicable Me starting next week, though. That looks cute.

One of the reasons Ryan and I wait to buy on DVD and don't go to a lot of movies is that dark factor. PG-13 is not necessarily a good rating for us. We've gone to R movies that have been less icky than some PGs. (Icky is a movie critic term you know!) Typically, I screen movies and have all of Ryan's life but now I try to figure it out and we just go.

You can't trust Disney anymore either which is sad. Who's running the store down there, fellas? Get it together and hang out with some kids. Why did Hannah Montana do so well? Or Clarissa Explains it All? Because they were cute. The world is scary enough for these kids, they want fun shows they can escape into, like we did with Bewitched or The Brady Bunch. Carry that over into movies. Try new techniques like the Pixar movies. We all loved that, didn't we?

Also, stop with the strobe-like action. You're going to cause brain damage, or at minimum raging headaches. Choppy, fast movie sequences do not create suspense, they create choppy, hard to follow movie scenes. Get a grip. Tell a good story! Kids are so smart and saavy these days. You don't have to shock and titillate ... just tell a good story! \

At any rate, I give the movie 2 out of 5 stars, stars are awarded to Nicholas Cage, the kids in it (the kid who played the apprentice, his girlfriend and the kid arch enemy with blonde spiky hair) and the start of the movie which had a good plot. Cinematography gets a thumbs down from us as does the entire end of the script.

Have a great day and we'll see you tomorrow.
Much love and joy,

Karen

Ryan is OUT of the building!

2010-07-21T05:56:00.000-07:00

Good morning everyone!

It's a beautiful day and we have a lot to do. Summer is always like that, isn't it?

Ryan started UCP Teen Group yesterday and had a great time. They made art projects. He came home with a cool little tic tac toe game he made and a book necklace thing. This year they've planned outings to Paul Bunyan museum, fishing, bowling and a picnic/horse event at Legacy Farms. Ryan dearly loves the group but misses pottery they used to do. Guess I'll have to enroll us in pottery class this winter, huh?

We are furiously picking Ryan's green beans. He's never eaten so many green beans in his life! I LOVE LOVE LOVE that he's getting fresh organic vegetables. His tomatoes and cucumbers are blooming and growing like crazy so I expect we'll be eating those soon. Ryan actually has a little bit of a tan this year! I'm NOT kidding!!!!! It's slight but it's the first time that's ever happened because until we had the horticultural beds and the privacy fence he just didn't want to spend time outside in our yard.

Last night we grilled out and I made S'mores after dinner. We sat on the patio while we ate the messy things. I went into the house to finish dishes and wash those sticky marshmallow forks and ... wait for it ... Ryan stayed outside with the dog BY HIMSELF! I pushed it a little and took out garbage and went to the bathroom. I was inside a good ten to fifteen minutes. I got ready to go out and he was coming in. HUGE for us.

Today we're headed to the greenhouse for more horticultural therapy. I also want to give him a chance to socialize and talk about his garden with employees and other customers. I'm blown away by how much it helps him. At any rate, I'll see you tomorrow. God bless and make sure to get outside today.

Much love and joy,

Karen

My New Pantry

2010-07-20T06:08:00.000-07:00

Hi there,

I've told you before that I'm an organization junkie and this pantry is no different. I have very deep shelves and things get lost so easily. I was re-buying items I already had and not buying others, simply because I couldn't find them or thought I had them. Enough! I decided to spend the money on organizing and figure I'll have it in a year.

Isn't it awesome???? I arranged things atypically. One storage area is spaghetti, another chili and a third strogonoff. That way I know if I have the ingredients for a particular meal. The gal at the store asked what I was doing with all the containers. When I told her she said, "But then you only have that many meals to choose from." Not really. This are the meals I cook over and over. These are the items in the pantry for the good old standbys.

Let's say we're going to grill. That involves meat, vegetables and some sort of salad. That's not going to be in the pantry anyway. What about chicken and stove top stuffing with potatoes (a winter meal). I have one container labeled beef and two labeled chicken. They hold broth, gravy, Shake n Bake, Cornflake crumbs, chicken soup, and various related items. A container labeled 'sides' will have the stuffing. I keep the potatoes in the frig. It works, trust me.

I used my Sissix Big Shot to create labels for the various baskets.

Aren't they darling? I cut out a circle with a Clear Die Cut in a chocolate color. Then I ran it through in an embossing folder to give it texture. The petal portion is a daffodil color and cut with a scallop die. I used mini glue dots to fix them together and my wonderful Dymo labeler (see a previous post) to tag the baskets.

This is the contact paper that I'll put under the baskets as soon as I get a chance. With all the basket work and cleaning I didn't get to the contact paper ... but I will!!

I even have a basket labeled snacks. I have Snackwell cookies, mini boxes of raisins and various other items in there. A serendipitous effect was that I could see how many healthy snacks I had versus the unhealthy junk food ones. Now I can put more healthy ones in there!

I have a couple of large baskets on the top shelf because I have more room and also I needed a place for crackers and chips. Otherwise the bags are everywhere.

Bottom line, you have to give up half a day to get this done, more if you don't have the containers. Expect to spend $100 to $150 organizing but if I don't keep re-buying or letting food expire I should make that up in a year.

Have a great day and we'll see you tomorrow!

Much love and joy,

Karen

Social Opportunities for People with Disabilities

2010-07-19T06:25:00.000-07:00

I can't believe we're half way through summer, can you? The locusts are setting off mid-summer sirens, the cicadas are nyang-nyang-nyanging and the crickets are chirping. The wealth of sounds during the summer blows my mind just like the silence of winter can do the same.

I have purple finches in my hop hornbeam tree out front. They arrive in May, build a nest in my taller cedar bush and have babies. They are adorable and sing sweetly. Then in late June or early July, they move on. We have a cardinal pair and of course robins.

Until a few years ago Ryan couldn't hear birds. Then a man recorded a CD with bird calls. Because Ryan could turn up the volume on his CD player, he heard birds for the first time. Since then we've purchased CDs with frogs and various other wildlife that he couldn't previously hear (crickets still escape him) but he has heard birds and that's huge!

He fell in love birds and now is part of a banded bird project. He has adopted two birds so far, an indigo bunting and a gold finch. We haven't received a call that they've migrated back to the area yet. If they do come back, Ryan will get a call so he can see his adoptees and get a photo taken with them. What an amazing hobby.

He's also fascinated by eagles and hawks. We've visited the Eagle Center in Wabasha and he couldn't miss their cry from a few feet away. (He also has a passion for the American flag and there was a flag expert there one day ... God is so good!)

We all search for ways to foster friendships for our children with special needs. The only way I've found is to foster interests first. Get them involved in a variety of projects. Figure out what they enjoy or are passionate about. Dialog comes when people have things in common. Ryan's language skills have improved as he discusses birds, gardening, scrapbooking and all the other things he's involved in.

The bottom line ... stop worrying about "social opportunities." Get your special someone out and about. Develop hobbies he or she can do on their own or with your help then join groups of that nature. Social opportunities will abound. It'll never be what it would for you or me, but people, for the most part, are polite, considerate and try to answer questions and talk to our special loved ones.

God bless you today and fill you with joy at the idea of adopting a new hobby!

Much love and joy,

Karen

Schedules and Sleep

2010-07-18T07:22:00.000-07:00

Good Morning!

It's a lazy day for us. Ryan was exhausted and I learned from experience that if he wants to sleep, he needs it. Badly.

I told my son's doctor once that Ryan was up in the night and he suggested a sleep clinic. It's like ... boy, you don't spend much time around the disabled do you? I explained that some people with cognitive issues can get their days and nights mixed up, just like babies do. For that reason I've always stuck to a rigid schedule for Ryan's bedtime.

Honestly, I believe most children do better with schedules period. It helps them feel safe. They know the boundaries of the day. I think that's particularly true of people with disabilities that mess with their understanding of time.

Now that Ryan's twenty years old he still keeps to his schedule but he can be flexible. The bedtime is later but he still goes to bed around ten o'clock. That way if he gets up in the night and can't settle back down he can have a snack and go back to bed, there's plenty of night left.

It's hard for people to understand why people with disabilities get their times all mixed up. I think its the nature of the beast. Ryan's schedule worked amazingly well for him all through childhood. If your child isn't going down at night maybe he or she is taking two naps during the day and only needs one. Or maybe, like Ryan who outgrew naps altogether by age two, he's better off with a longer night and no naps.

Ryan's Circadian Rhythm is strong. That means that when it's dark he wants to sleep, when it's light his little body wants to be up. I'm the same way so it didn't surprise me that he and I were the same. I outgrew naps ... well, let's just say my mother told said, "You never slept. You didn't need it. You were always up and busy." So if he inherited that, combined with the weirdness that is disability it all figures.

At any rate, I've rambled enough. All that to say, don't over-react if your child is not sleeping typically. A schedule and some tweaking on your part may be all that's necessary. Sometimes diet is a factor ... but that's a topic for another blog post.

Take care and sleep sweet!

Much love and joy,

Karen

I'm fed up with the Weather Channel...

2010-07-17T08:05:00.000-07:00

Okay, as a fan of all sorts of weather I'm going on a rant here, so stand back, you might get dirty.

I just got done watching the weather channel where the announcer, a young woman with a high pitched voice ACTUALLY jumped up and down while she described possible tornadoes in the upper Midwest today. Apparently this idiot has never seen what a tornado can do PERSONALLY. Yes, they are wild, untamed, even magnificent storms but .... there are deadly consequences and she just "ain't gettin' it."

I don't think she understands the sick feeling people get when the sky turns green or how they feel when running to a basement or bathroom and hoping that loved ones are safe. Tornadoes and storms are spectacular enough without being sensationalized by them. I plan on writing to ask what their function is. The last umpteen times we've had weather issues and needed radar and warning information they forecast it in a tiny box at the bottom of their screen while playing Storm Stories or some other past storm. Are they in the business or warning or ratings? Make up your minds people!

I remember how worked up my grandmother used to get. She lived in northern Iowa (tornado alley) in a retirement home with no basement. Finally we told her, "Grandma, quit watching the Weather Channel. Just watch the local crawls." She did and she calmed down. She told her neighbors, they told their children and so on.

I'm not just whining to you, dear readers, I'm contacting the Weather Channel. I've had enough. I'm boycotting the station as of today. I switched on our local news the other day when the weather was wild and the weather gal, Leeann was calm and reassuring. She talked safety precautions and the like in simple, unaffected language. She DID NOT yell, screech, hyperventilate (maybe she breathed a little fast and swallowed a few times, it was overwhelming weather) or jump up and down.

The gal today, on the Weather Channel went on and on about the TOR:CON index that some yahoo at the Weather Channel made up to try to "make book" on the likelihood of tornado development. Personally, I think he wanted to leave his footprint Fujita-style and the TV execs liked the idea of the index coming from their station exclusively. When it comes to weather and warnings NOTHING should EVER be exclusive.

I've advised my son with special needs to watch locally or turn on the NOAA weather radio. For radar we use our computers and the local stations. We don't watch the Weather Channel anymore. They can go fly a kite, preferably in a lightening storm. Of course, then they could lay exclusivity claims on electricity. Honestly!

Well, I'm done with my rant. Off to the Weather Channel to complain.

Hasta la vista baby!

Much love and joy ... and safety today.

Karen

Christmas Shopping in July

2010-07-16T05:54:00.000-07:00

Hello everyone,

I'm feeling that weird Friday mixture of wanting to plan a fun and crazy weekend and being too pooped to consider the grocery store. You know the feeling, don't you?

It's supposed to be rainy on and off this weekend so I thought maybe we should have pizza and video night. Always a hit. I purchased the Toy Story 3 Wii game for Ryan for Christmas (yes, I am one of those people) but now I realize we'll have to try it to make sure it works because by Christmas they won't take it back if it doesn't. I don't blame them for that. So, tell me, how do you let him try it, make sure it works then take it back to wrap for Christmas? The answer: You don't. Nuts. Down one present.

I love Christmas shopping all year long. I don't feel pushed, I can wait for sales, I have a lot of selection ... there are too many benefits to name. I save some types of shopping for the season like wrapping paper and bows, stocking stuffers, little thinking of you type gifts but the bulk of mine is done by Halloween or Thanksgiving at the latest. Except for Cyber Monday, that is.

I LOVE Cyber Monday. While all these nuts are out on Black Friday standing in mega lines and fighting for electronics I happily sipping my morning coffee and reading the paper. Come Monday morning I get up early and start my computer. While it's booting up I pad into the kitchen where I make coffee and a bagel. I let out the dog and head back to my office. The dinging starts.

DING Buy! Lands End! 50% off apparel! DING Amazon has half price Spiderman Wii games for the next hour DING JC Penny has 30% off all pajamas, DING ... e-mails flood into my box, chasing after my business and everyone has free shipping. I slide my feet into my fuzzy slippers and take a sip of my coffee. DING Electronics Mega Sale DING ... By noon, I'm done. All morning I sat in my PJs relaxing and finishing my shopping.

A friend brags about a TV she got at WalMart on Black Friday (after standing in the freezing in the predawn hours) I didn't have the heart to tell her it was $30 less on-line on Monday. Another friend lamented that I'd missed all the good deals that she got at Best Buy on music. I smiled and congratulated her, mine cost the same and are winging their way from Amazon as we speak, but I say nothing.

Cyber Monday rocks. Instead of me working to give away my money, THEY solicit ME. I like it!

So, you don't have to shop in July, but do shop Cyber Monday. Just remember that you're putting things on a credit card. Only spend what you can pay off or it's not a sale item, is it? Or use a debit card.

Have a great day.
Much love and joy,
Karen

Beauty in the Storm

2010-07-15T05:40:00.000-07:00

Good morning, everyone!

It's a crisp after-the-storm type morning. We rocked and rolled a little last night, but nothing dangerous for us. Some areas had significant winds, hail and even tornadoes. At one point, however, near sunset, the whole world turned a beautiful orangey peach. I took some shot for you.

I have a couple more to show you ... I wish I had a camera that could have truly caught the light because it was staggering how gorgeous it was.

Look at the clouds to the left, the whole sky was bubbled with them right along side the deeply sinister dark ones. Magnificent. I took photos until it got too dark. I am so awed by God in these moments, you know? It's hard to wrap my head around it all. Instead, I just enjoy.

How are you this fine morning? I've got a ton of work today so I'd dancing around it like it's on fire. So hard to be self-employed sometimes. I just want to play everyday and that's NOT how it works. I can flex my schedule but I still have to work.

I just wanted to share these photos with you. I'll make a point tomorrow! Take care of you ... may you find the beauty in every storm.

Much love and joy,

Karen

Are you my mother?

2010-07-14T06:25:00.000-07:00

Ryan loves taking pics of storm clouds. He also loves thunderstorms. Since the movie Twister came out, he's loved to watch it during storms. I don't know if he's terrified of tornadoes and processing, or just going for a Surround Sound and 3D effect. What a kid! Fortunately, we don't get much for severe storms here so we're lucky. I have family in southern Minnesota and all over Iowa. THEY get storms. The F5 tornado that ripped with a couple of small towns in Iowa a couple of years ago was about five miles from my aunt's home she said. Yikes! Too close for me, my friends.

My father used to go outside during storms. It was almost impossible to keep him inside. He was a scientist and loved to feel the weather on his skin. I wonder if Ryan inherited some of that and it's manifesting traits in a different way. We still see traits of grandparents and parents in our children, even though you have to peer through the disabilities to see them. I know that Ryan likes to hear if he does something like someone else. Family connectedness is so important when it seems like all people ever see is what you can or cannot do. It's nice to hear, "Your uncle Dave used to do that too!"

This week, I promise to notice all the wonderful little things Ryan does like family. I will sit down with him and talk about how he is connected to our family and how he fits in so perfectly. Even if you are adopted you take on traits of your adoptive family so this doesn't leave you out either. Just make sure to make your comments positive. I know I will.

God bless,
Much love and joy,
Karen

Hey, I know why I'm tired!

2010-07-13T06:37:00.000-07:00

Good morning,

I thought I'd show you a gorgeous plant from the greenhouse, horticultural therapy you know. I love wandering through greenhouses, smelling the flowers, taking photos of the blooms, feeling the leaves. It's therapy for both Ryan and me, one that I believe works wonders for most folks.

I know I've chatted about it before but it turns out there's a reason I crave being outside so much. I have SAD. I mean LITERALLY, not just a self proclaimed version (or aversion) in winter. Seasonal Affective Disorder isn't about depression for me at all. It's about hibernation. When others are getting excited for fall I'm sinking slowly, yawning, going to bed with the chickens and finding it a struggled to be up. This starts in ... are you ready? August. Yep. I sink more and more each day, struggling to find energy.

Along about January, when others are saying they have SAD, I'm starting to perk up. According to my rhematologist, I'm describing real SAD. Not only that, there's sometimes a biological reason for it. Right now, in the middle of summer, when I'm getting mega sunshine and the days are long, they tested my Vitamin D. And I am LOW. I start on 50,000 IU of prescription Vitamin D, one pill a week for 8 weeks. That's a LOT of D (Usually people who are deficient take about 1000 IU per day).

Interestingly enough, research is starting to show Vitamin D as a possible treatment or cure for OA. Hmmm. I had to have my hip replaced due to OA. Vitamin D is supposed to help those with the cartilage wear kind of OA the most. Hey, that's me too! I'm thinking ... what if Vitamin D cures me! Or at least treats me! It's such a simple fix.

I can't wait to see if I have more energy this fall! Pray for a good ending for this for me. I'd love to have this work beautifully!

Take care of you and your special someone and may God bless you richly,

Much love and joy,
Karen

Manic Monday or a Relaxing Day Fishing

2010-07-12T05:30:00.000-07:00

Good morning!

How are you? I'm feeling better this morning. I listened to a wonderful speaker last night and it brought me right out of my funk. Actually, prayer did that and this guy just affirmed it all for me.

Isn't my puff ball plant cute? I love it! It's heat resistant too so I'm happy with that since it's on my side patio. Now, if I can just remember what it's called! I always start the summer by hanging on to those little plastic designation sticks then I get sick of looking at them and pitch them. Then I wish I had them again. After that I figure I'll recognize them each year anyway.

Nothing has changed on Ryan's mess yet. I wrote the e-mails and hopefully today will bring some closure to the situation. I'm trying not to think about it or stress about it. It's on someone else's desk now. I do have some paperwork to do to get ready for a phone call later but that minimal if it solves some of these issues.

This morning was actually cool enough for a light weight blanket. Weird. It's been so warm and toasty lately. Crawling back in really sounds good! BUT that's just asking for insomnia tonight! Ryan has started sleeping until 8:00 or 8:30 for the first time in his life. That's sleeping in for him. We get an occasional 9:00 but mainly he's up by 7:00 without fail, full of energy and ready to tackle the world again. I am humbled by that type of optimism and strength.

I should clean my house today but I may take Ryan fishing instead. I thought about some therapeutic scrapbooking with him but the day is perfect to spend near the water. hmmmm.

Whatever you do today, have an awesome one.
Take care of you and your special someone,
Much love and joy,

Karen

Talk to you soon,
Much love and joy,
Karen