Recovering Noah

As promised, here are some pictures of Noah's new adapted tricycle. He LOVES it. He immediately knew what to do and started pedaling with his hands (with help from Mom). He is definitely the coolest kid on the block. My parents set up at Canton each month, so we took the tryke out there so they could see... all the kids came up and wanted to try it out. Noah was looking at them like, "Get your hands of my bike, you punks". But he graciously let everyone have a go - while I nervously bit my lip and prayed that one of them wouldn't break it. The people at Ambucs are awesome. We are so grateful for them. Noah's Mom

It's so wild how good things have been lately. We feel so at peace right now with Noah and his therapies. I keep watiting for some bomb to drop and disrupt it all. You know a few weeks ago I mentioned that someone (a stranger, at that!) sent us their old Maclaren Major special needs stroller for free. It saved us hundreds and hundred of dollars. Well, I also mentioned that our OT.... (and I'm going to give a shout-out. It's Therapy Works! in Kaufman and the OT, Melyn, is AWESOME)... applied for Noah to receive a free adaptive tricylce from Amubcs. ( http://www.ambucs.com/ ). The Mesquite club gives out 1 tryke or bike a week and they chose Noah for tomorrow's meeting. Can you believe it????? I wasn't even sure if he'd get selected - and if so, I thought it'd be months from now, but we got the call yesterday. I'm so excited. They're having a lunch tomorrow and they're going to present the tryke to him. I'm sure I'll be sobbing. (Note to se...

I realized that I haven't posted about our trip to HALO yet. Oh my goodness, it was fantastic. I don't even know where to begin and I'm sure I'm not going to do it justice. I also tend to space out with anything that gets too scientific and technical, so everything I explain is in really simple layman's terms - because that's the only way I understand them. :-) Soma is originally from India and has a son, Tito, who is nonverbal and considered severely autistic by most people. Anyway, she never gave up on him and eventually taught him how to read, write, and type. They've been featured on 60 minutes and the BBC did a huge program on them awhile back. Well, HALO (Helping Autism through Learning and Outreach) is based in Austin and Soma works with nonverbal kids and basically assesses their learning style and the way they best learn so that we (parents, teachers) can teach them. A lot of the kids she works with end up being mainstreamed in school with an aide t...

If you are a parent of a child with autism and receive the Schafer Report, you've probably already read this. If not, it's worth checking out. It's the story of 12 year old Ben, who has autism, and the decisions that led his parents to place him in a residential treatment center. Frankly, it's my worst nightmare. http://tinyurl.com/39vux . I pray it never happens to us. I pray that Noah will recover and be able to live on his own or stay with us forever. I pray that we don't have to send him to a residential treatment center. And I pray for Ben and his family because I know it was the hardest decision they ever had to make. Noah's Mom

Most of you who have children with special needs know about this short essay. It's a staple in the special needs community. But every once in awhile I need to reread it, and I thought it would be a great read for those of you who've never seen it before. WELCOME TO HOLLAND byEmily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane la...

We had the most wonderful thing happen to us on Thursday. There's an email group called Hemi-Kids ( www.hemikids.org ) and it's for parents of children who have hemiplegia- and Noah's stroke or inutero infection (we don't know) caused paralysis and weakness on the left side of his body. Anyway, it's a wonderful site chockful of information and resources. Well, I had posted a question on there about strollers and what kind people use for their kids. Even though Noah can walk, he has no sense of danger or awareness. You cannot let go of him, and we have to keep an iron grip on his hand whenever we walk through a parking lot. He still rides in the baskets at the store, but his legs are getting too long, and he's outgrown his stroller. We are a loooooooooooong way away from having him walk beside us at a store. We still have to put him in his too-small stroller just to go inside post office because he just wants to lay down on the floor and rock. Anyway, several par...

Oh my goodness, I don't know whether to be mad or proud at little Eli. We went to see Dr. Packwood, Noah's eye specialist today, and Eli went with us. After the fit he threw in November, I swore I wouldn't take him back with me. But I didn't have anyone to watch him and thought that maybe he'd matured a bit in the last six months. So we get there and they have to put these drops in Noah's eyes to dilate them. I reminded them that Noah is the strongest child in the entire universe. I'm not kidding. I see his future as being one of those guys who goes to youth groups and high school assemblies and tears phone books apart with his hands and crushes boulders with his head and lifts a car over his head with one arm. He's got super human strength. So the doctor calls in extra people to help hold him down and Noah is just crying and kicking and screaming. He was hysterical. Well, Eli thought they were hurting him, so he ran up to the doctor and started kicking ...

Here's our latest family picture. It's just a snapshot... we can't ever get our act together to go to a studio. Plus, it's difficult to get Noah and Eli to look at the camera at the same time, so for now, the digital camera is our studio. :-) Noah's Mom

Yikes! Someone left a comment on one of my posts and it made me remember that I haven't updated the blog since the end of April. What is it with me and blogging? Some people do it everyday. I really need to get in the habit of doing that b/c this also serves as a diary of how things are going with Noah. So... where did I leave off? Okay, last time, I was talking about how Noah spent a week at Children's Hospital. It turns out he had an MRSA staph infection in his leg muscle. He had three abscesses pop up and one that had to be lanced. Oh yeah... seeing that whole lancing thing quickly vetoed any fancy idea I had in my head that I could be a doctor or nurse. It was gross with a capital G. Anyway, they said that Noah's skin is basically a breeding ground for staph infections. Everytime he scratches his skin, he risks getting a staph infection. They said it lives on his skin and then uses the open skin as a portal to infect his muscle and blood. And since it's MRSA, it...