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