Friday, October 15, 2010

Horse Listeners Orchard

We recently went to the Horse Listeners Orchard in Ashford for the MOMS club fall party. We got to socialize and go on a tractor ride around the orchard. Jack had a great time! Here are some pictures of him near a row of huge pumpkins, which he loved!

Sunday, September 26, 2010

Affordable push-talk buttons??!?

I may have found an actually affordable speech button that records your speech and initiates it when the button is pushed!

Thanks to another mom on my Angelman Syndrome email list, I may not have to go about figuring out how to manufacture an affordable speech button myself! I was disgusted by the price tag of $100 or more for these speech devices since the recording device itself costs $9 and the rest is plastic. Companies like to charge more for things that their customer base needs for survival and can't find anywhere else. Thank goodness there is this company that seems to have some sort of moral compass! I'm going to try one to see if it is really easy for Jack to press, and if it is, we're going to get a bunch of them!

http://store.mayer-johnson.com/us/easy-push-talking-pocket.html

Jack and other people who may not be able to speak at any point in their lives, and who have trouble learning signs need augmentative communication devices like these buttons to be able to communicate with other people. It's not right to charge an arm and a leg for a product like this with parts made cheaply in China just because you can.

Saturday, May 22, 2010

Wish it were on Video

Last night, within the span of time between dinner and bed, Jack did two HUGE and miraculous things.

The first involved walking. Jack's been getting better and better recently at putting weight on his legs in standing and assisted walking, but this was totally new and different. I put Jack on his feet and put one of his favorite toys in my mouth so I could face him and hold his hands. Then, without even prompting or pulling him in any way, he took three or four REAL steps toward me to get the toy, with ALL of his weight on his legs! It was so different from the "walking" he has done lately. It was totally amazing! He got the toy and immediately started laughing, he was very proud of himself!

The other amazing thing he did was while his father started running his bath. He was in the living room, on the side with his toy bins, a wall that faces outside. When he heard his bath water being run, all the way across the living room and hallway and in the bathroom, he began scooting toward the sound of the water. Within a MINUTE he made it all the way to the bath tub! He's never done anything like that! He started scooting a couple months ago, but has never gone that far, never tried to go into another room like that!

We are very proud of him!!

Saturday, November 21, 2009

Nothing Short of a Miracle

I'm posting a video below to share with you Jack's walking progress. It has been a long few years but seeing him do this makes me realize how much progress he's actually made, and how hard he works to do simple things we usually take for granted. I'm so proud of him!


video

Saturday, November 7, 2009

Autumn and School

Jack's doing well at school, making friends and loving it! Every time I say the word "school" now he smiles, and when he sees his bus he starts laughing and kicking his legs like crazy, even on the days he is tired!

He's also doing well in PT. They want to get a walker for him at school since he's doing so much standing and has taken a couple steps while supported. I'm looking forward to hearing more about his progress there.

Here's an outdated but cute picture of Jack waiting for the bus one afternoon:


Friday, September 4, 2009

When it Rains, it Pours

Well, Jack's had five big changes in the last week and something seems to be making a difference in his gross motor skills already. The five big changes are:

1. Jack started school last Thursday at a different school from last year. Though he had summer school in this new building, it was with a completely different group of people. Now he has daily visits from his therapists, a teacher, special ed teacher, and his paraprofessional all working with him throughout the day. I loved his other school but it seems like this school takes a real teamwork approach to getting Jack to work on his goals, which is so amazing. It's as though there's a team of people getting paid to do what I did with Jack for three years. It feels great to have some of that responsibility transferred off of me and onto other people.

2. We started a brush and press program based on the Wilbarger Brushing Protocol. Every two hours during Jack's waking day, we're brushing him with a surgical brush and then doing joint compressions. We've also gotten a hammock and started swinging him in it daily. This is all to try and meet some of his sensory needs that I've come to learn may be playing a big role in his lack of progress.

3. I started forcing Jack to do tummy time every day for at least 45 minutes. To do this I've had to hold down his leg when he 's on the floor or strap him to a roller board I made for him so he can't roll over. He's hated it but we're seeing the beginning of an army crawl when he's on the floor on his tummy. That seems like a lot of progress for one week!

4. I started a trial of a gluten-free, sugar-free, dairy-free diet for Jack. Other parents of kids with sensory issues have reported an improvement in their general sensory awareness or gross motor progress on this diet. There are no clinical trials of the diet that support this connection but I figured it couldn't hurt to try it, so that's what we're doing. The hardest part has been eliminating cheese from Jack's diet, we love cheese!

5. Jack started taking Trazodone at night to help him sleep, and every night since he's started *knock on wood* he's slept through the night, at least seven hours. Jack NEVER slept this much before.

The other huge improvement I've seen in the past week other than the army crawling is his walking. For the past couple of months I've been holding Jack up by his hands, forcing him to take the standing posture. In the last few weeks he's started moving his feet alternately, but not putting very much weight on them when he does it. He sort of hangs from my hands and moves his feet lightly on the ground. Yesterday, however, he took a lot of weight on his feet while doing this walking practice, even wearing his sandals in which he usually will not take any weight on his feet! I'll post a video of him doing this soon.