Friday, November 2, 2007

The Backstory

Earlier this year, Ryan was diagnosed with Sensory Processing Disorder. When he was first diagnosed, he had problems with textures in foods. He would only eat crunchy foods, like crackers, Teddy Grahams and pretzels. He loves milk, dried fruit, and french fries too! He hates to even be near any food that is wet or mushy. We thought that was the extent of his problems but while waiting for occupational therapy for 4 months, he started exhibiting more sensory issues, some which can be symptoms of Autism. He is uncomfortable making eye contact, does not like when people touch him and he hates certain textures. He has very few words and has started signing with us. We are working in OT now to overcome some of these issues but it is a very slow process.

Here are some previous updates on Ryan:

Ryan had an occupational therapy
appt yesterday. We get there and he is immediately in a bad mood. Crying, screaming, throwing himself on the floor, etc. People are looking at me like I am torturing him. The OT asked if this was normal for him. Yep, sure is. If he is ticked off, he makes everyone know it. She said in her experience this wasn't normal sensory setting off issues and that something physically might be bothering him and suggested we contact our ped to talk about his reflux and increasing his meds. I call the ped and they want us to come in. We get there and it starts all over again. Screaming, crying, arching his back, banging his head on the floor etc.

The doctor examines him and asks me questions for a good 20 minutes. She sits down and says that she doesn't think it is his reflux but agrees to increase the
meds to rule it out. If we don't notice a difference in 3 months, then we will go to GI to do the endoscopy.

She is very concerned with his speech, or lack there of, and communication skills in general and is concerned that he isn't understanding the things we tell him. He doesn't know his body parts, he isn't social with people he doesn't know and it takes him a long time to warm up to people. He will only repeat things we say to him. There was a whole list of other things, all things that we know he is developmentally delayed on.

Then the big A word came out. Autism. I immediately started tearing up because I know that he could be but no one would ever just come out and say it to me. She started tearing up and stressed that she isn't saying he has autism but certainly shows some symptoms and is referring us to the Autism center at Children's hospital for an evaluation.

So we have a plan. He is getting a full blood work up to rule out anything else...thyroid,
celiac disease, cbc, etc. We will go for a full speech & hearing eval and we will wait and hear from the Autism center. We already have an evaluation scheduled with the Help Me Grow program.

I am so relieved that someone finally came out and just said that it could be autism. Now I know that we can move on and Ryan will get the therapies he needs.

Our case worker with the Help Me Grow program came over today to discuss Ryan's evaluation and to go over options. We were not surprised by any of the findings on the evaluation. Major sensory issues, language & speech delay. Gross motor was on target for his age.

There are options out there but of course, there are waiting lists. We will continue receiving OT at Children's. Luckily our insurance covers 20 OT visits a year and we only have to pay our copay for each visit. We will also go on the waiting list for the Franklin County Board of
MRDD. They have therapists & teachers that will come to our house once a month to do therapies and to show us what we can use at home to help Ryan. Once we complete some paperwork with them and receive some home visits, we can go on the waiting list to receive therapy 3-4 days a week at a center with other kids that have some of the same problems Ryan does. And the best part is that this is all free and covered through the county.

She also shared that if Ryan does get an Autism diagnosis that there are many other doors that will open for him but we won't cross that bridge unless we have to.


1 comment:

MaDoBe said...

Kelly, you and Greg are great parents. You have researched and learned so much about how to help Ryan. I know that the process can be difficult and frustrating, but I'm so glad Ryan will be getting what he needs to be able to grow, develop and have a happy childhood. I also love the blog idea, not only does it keep friends and family updated, but it will also help you see all the hard work you have done and the progress you've made through it all. Love you all!