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!

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.

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!!

JACK IS SCOOTING!!

http://www.youtube.com/watch?v=kV3kdZKKVys

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!

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:

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.

The Divine Comedy

TV relating to Jack's Life

Global TV Ontario just did a story in June on CME therapy and Teya, the girl whose story promted me to look into CME in the first place: http://www.youtube.com/watch?v=eM0Mk2zHKf8

Also, we met some new families at the Upper Northeast Regional Angelman Syndrome Foundation picnic in July, including a mother and daughter from New York who are going to be on Mystery Diagnosis on the Discovery Science Channel on August 10th at 10pm.

Mystery Solved

Well, we found out last week why Jack keeps getting pneumonias and why he's sick all the time--he's had a chronic sinus infection. He started at least four weeks of antibiotics last week and his dr. will check on his progress toward the end of those four weeks. He may need to be on them longer if it's not cleared up by then.

In the meantime, Jack's getting used to being on his feet again after a lot of downtime with his third pneumonia. Here's a video of him yesterday in his walker. He's really starting to get the hang of going forward in it, though he uses both legs at the same time!

Meeting a new family and more awesome CME

We got to meet a family from one of our Angelman email lists today who live in the area. The similarities between Nicholas, who is 7, and Jack were amazing. It was great to see what things he'd learned in his seven years and be hopeful for what Jack might learn in the future. Here's a short video of Nicholas and Jack playing in the grass, and a few pictures of them.

Jack is doing amazing things!

Ramon got Jack to do some really amazing things today. Besides sleeping well and not screaming through the whole therapy session, which are also amazing improvements, Jack has tolerated standing and "walking" with just support on his ankles. Here's one video from our early session today. You can't see it through the whole video but Jack is walking on two boards turned sideways that have a width of about 3/4" each!!

Toronto is going well

Jack's first therapy session with Ramon went amazingly. He didn't get upset at all and Ramon was great. He was so energetic and happy. He was so great with Jack. In bewteen the first and second sessions, we went to a semi-accessible playground I saw on our way to the therapy office. The playground had partially paved paths, but there were wood chips around the actual playscape. Jack enjoyed a slide for the first time by himself (without me holding him) and a swing, which he always loves. Here are videos of Jack having a good time.







sorry this one's sideways, I couldn't find a way to make it rotate and keep the whole video.

Toronto at last!

We've arrived in Toronto, safe and sound. We're in the same hotel we stayed at for the other two trips so it feels a bit familiar. It is pretty lonely though without another adult, I have to say! After we got in and had a snack, Jack "walked" with me outside of our sliding glass door, then back in. (I held his hands and shifted his weight for him.) Here's a picture of him standing and noticing the camera. Notice he's standing straight with me just holding one arm!!

Off to Toronto again

We're a little more than half way to Toronto today. We're going up for our third intensive session of CME therapy. Our first trip was just about one year ago and Jack has made HUGE progress since that visit. Before we went on that trip, Jack couldn't even sit up by himself. Now he can not only sit by himself but he can get from lying to sitting, and he can stand with just hand support. We'll be driving to Toronto today and starting the therapy tomorrow. So far the trip is going smoothly, Jack actually slept for about 7 hours last night (a record for him away from home) and he seems pretty happy and laid back! I think maybe he's getting used to being away from home more. Here's a picture of him last night in the big armchair in our hotel room.

Pond Thing

This past week, I walked down to the pond close to our apartment one day. And I saw the weirdest thing I've ever seen in a pond. It was some sort of large plant, floating in the pond, not attached to anything. The leaves were curled up so I couldn't tell what they looked like but the stem or trunk of this huge plant was like nothing I'd ever seen before. I felt like I was seeing an alien. Here are pictures I took when I showed Jack and Shippee the weird plant:




















After about an hour of searching on the internet that night, I found out what the mysterious plant was: it was water lilies! The huge trunk-like structure is the water lilies' rhizome, a root structure that usually stays on the bottom of the pond. For some reason this one had become dislodged.


On another pond-related note, here are some pictures of the 2nd baby turtle we found on our living room floor one day a few weeks ago:

Mystic Aquarium Trip

We took Jack to Mystic Aquarium today to celebrate his birthday. We invited another family with a child with AS along. Here are a couple pictures of them together. They both seemed to enjoy the exhibits, especially the one where they could put their hands in water and splash. Here are a couple of pictures.

School is Going Well

Every day so far Jack's teacher has written in our communication log that he's had a good day at school. She says Jack just loves observing the other kids. He's been wiped out after he comes home. Here's a picture of him today after he came home and had a snack.


In Jack's backpack today I found a picture Jack's classmate Arwen drew for him. Jack's teacher wrote at the bottom "Here's Jack. He's my best friend." which I'm assuming is what Arwen said. It brought tears to my eyes! Here's the picture. Notice his smile is so big it's practically coming off of his face, much like in real life.

Hitting with a spoon

This week at breakfast one day Jack figured out that a spoon can make a really cool noise when it hits a bowl! Hitting an object with another object has always been something very difficult for Jack. If you think about it, it takes a great deal of coordination to keep holding onto something as you smash it into something else. For months and months we tried to get him to do it with no success, but this week he just decided to do it on his own! Here's a short video of it.

School Starts!

Jack started school this week. He had a sick day yesterday but did well both Monday and today. The bus picks him up around 12:45 and drops him off around 4. He loves watching the other kids and his instructional assistant and teacher are adapting all of the activities for him, so he gets to participate in everything his classmates are doing. We're very happy with his school!