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