a word on copyright

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!

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...

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

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

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!

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!

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.

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!

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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

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

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 ...

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

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

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

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

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

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

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!

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

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