Our Life With An Autistic Child: Week 50

On Friday, April 1st we changed our white lightbulbs at our front door to blue.

Phil was able to purchase blue light bulbs that actually came in an Autism Speaks Light it Up Blue package. I had never seen these before.

As the night of the Light It Up Blue campaign approached, I saw a commercial sponsored by Autism Speaks. It's a public service announcement about Autism hitting closer and closer to home. Here's the link:
Public Service Announcement

While prominent building across the world participated in this campaign, I am sad to report that the White House was not one of them. Please read this letter below written by a mom of an autistic child. It is well written and it triggered people from all over to gather on Pennsylvania Avenue with signs, but to no avail.
Letter to the President

Ryan received good reports most of the week. He was excited for us to read his report in his notebook on the good days and that would be the first thing he mentioned to us when we picked him up from Noah's Ark. On the bad days, he ignored the subject altogether. We experienced some of his rough behavior towards the end of the week and the weekend. He became stubborn several times and did a lot of arguing with us and Julia. But he also had some good moments and was loving with Julia and his cousin, Amelia.

To get an idea of how big Ryan actually is, Amelia, in the center, is almost 2 years older than Ryan.

My brother made Ryan a deal that if he continues to get good reports he will buy him the Sodor Suspension Bridge for his Thomas the Train set for his birthday. Ryan has been talking about this particular bridge for months. They shook on it. Of course just minutes later Ryan had a meltdown, followed by several other meltdowns throughout the night. But several times throughout the weekend Ryan talked to us about getting good reports so that Uncle T buys him the Sodor "extension" bridge. One time we caught him on video:

Ryan and Julia were in an advertisement in the Mahopac News newspaper, March 24th edition. If you have the paper, the ad for Noah's Ark is on page 29. Here is a link to the ad: Ryan and Julia are in the newspaper!
Ryan's skin has been having a severe rough spot ever since we returned from California. We stopped all powder supplements to see if we can get his smooth skin back. Most of the redness and puffiness has subsided, but the skin is still rough like sandpaper. Here's a picture of his legs back in the beginning of the week:

We are at a loss and feel so bad that we can't fix this for him. It is especially upsetting when we have to use an alcohol wipe to clean an area for his injection every other night. It burns him and he begs us to blow on his skin while we wipe it. There are sections of this "rash" on the front of his legs, back, stomach, and arms, but those sections are not as severe as the back of his legs and bum-bum. Ryan has been experiencing skin issues like this for years now and while the changes in his diet and medicines reverse the rash for a little while, it never lasts for more than a few weeks. I'm beginning to think that this is his chemical make up and it will be something we (and he) will always have to deal with.
On the food front, I made Ryan a GFCF egg free lasagna. The noodles are made by Orgran and were quite tasty. Ryan was off and on about eating it. I don't think it was the noodles as much as the Soy Mozzarella Cheese that I used that turned him off a bit. I think he is not used to eating cheese that he dislikes the texture. Here are some pictures of the tray after I put it together, once it came out of the oven, and Ryan trying it.

As for the new pizza place we tried out, there was no mistaking that Ryan enjoyed their Gluten Free pizza! I did not put the soy cheese on it, but instead asked the pizzeria to make it with pepperoni on top, one of Ryan's favorites! We tried out a new place in Fishkill called J&J's Pizza Town. It is located near Nature's Pantry on Route 52, which we go to often, so it is convenient. They made a personal size pizza and Ryan ate most of it in one sitting! Looks yummy, doesn't it?

We heard back from a few people about joining us for the Autism Speaks walk on June 5th. Please let us know if you are interested. And I need to get on the ball about ordering some more shirts so that I have them in time for Ryan's birthday. For the 100 or so people who bought shirts last year, please mark your calendar to wear it on May 12th, Ryan's birthday. If you are in need of a new shirt or want to order one for the first time, please let us know. They are $10 and proceeds go towards supporting children with Autism. I can order a variety of adult and children sizes. Here's a picture of the Ryan Express team shirt:

On a positive note, Ryan has been great about his B12 injections. In fact, about 2 weeks ago I gave it to him without first putting the numbing cream on, and he handled it exactly as if the cream had been there. Not using the cream makes the process much easier since we don't have to put on the cream and wait an hour to give him the injection. Cutting out that step has cut out the stress involved with timing everything. So we are happy to report that we have been skipping that step and Ryan is doing a great job.

And to end on a super positive note, Ryan received his first haircut at a salon today! For four years he has only let me or my mom cut his hair, and even then it had to be under certain conditions and only when he agreed to it. And until recently he wouldn't let us use a buzzer near his head. So going to the salon and letting them use not just the big buzzer, but also the little noisy buzzer, is quite the accomplishment! Here are some pictures of his experience.