Tuesday, November 27, 2007

It's been a while!

Sorry it has been so long since I last updated.

Ryan is doing great. He is now trying new foods which is huge for him. He is now tasting things that I never thought he would eat. He now likes applesauce! Who knew my boy would eat something wet & mushy. He also ate a Nutty Bar at my parent's house. Finally he got some protein (peanut butter) even if it was covered in chocolate.

Ethan also had a checkup yesterday for his thyroid and after 7 months of playing around with the dose, we finally have it regulated! He doesn't have to get another blood draw for 4 months. Yay!

Monday, November 12, 2007

We all know the cost of health care is on the rise and has been for some time. We are very lucky to have insurance but we had no idea how little therapies are actually covered. We are lucky that Ry is so young that he will have some therapies covered through the Franklin County Board of MRDD but this is in addition to what he is already getting privately. Here is a very informative article in the Columbus Dispatch.

It is so baffling to me that 1 in 150 children (1 in 94 boys) are diagnosed with Autism but yet insurance companies don't (err..won't) recongnize the importance of these therapies for these children to thrive in our society. Most insurance companies will cover the diagnosis of Autism but won't cover the therapies. It's like getting the diagnosis of having cancer but well you are on your own to get chemo. Maybe that is a bit extreme but these kids need help in their every day lives and at $200 a pop for every single therapy session, I would hope insurance companies would come around.

Tuesday, November 6, 2007

Finally, a good therapy session!

Ryan had a great OT session today. We spent some time in the sensory area and his therapist introduced 2 new things to him. The first as a brushing technique called the Willbarger Protocol in which we use a soft brush and brush his arms, hands, legs, feet & back. We also incorporate joint compressions into this routine as well. Ryan was very receptive to it. I am to do this as often as possible. Our goal is every 2 hours.

The other items she introduced were weighted things including ankle weights & a vest. It took him
several minutes to get used to the ankle weights and he kept trying to take them off but after a few minutes he was fine with them. He loved the vest but he also got a reward of going up and down the ramp in the PT room so he was a happy guy. He wore it for 15 minutes and was completely worn out when we were done. I am hoping our favorite Aunt Leigh will be able to make us one and we will use corn hole bags as the weights.

Ethan went to play at his friend's house while Ry was at therapy so he was very happy to go to see his friends, Alex Porter & baby Drake.

Saturday, November 3, 2007

Our boy can hear!

Ryan passed his hearing test. We are so relieved.

I wasn't sure what to expect but the audiologists at the Columbus Speech & Hearing Center were so wonderful with him. I warned them of his fear of enclosed spaces and they got him all set up with a Baby Einstein video for the first test. They placed a small probe in each ear to test for tone. Once he passed that part we moved into a sound proof booth. One audiologist sat with us to keep Ry occupied in between tests, while the others were on the other side of the booth running the test. There was a large speaker on either side of him and every time Ryan heard something and looked toward the speaker an old fashioned bear playing cymbals would light up and play. Ry would get so excited when he saw them and kept signing more, more!

So he passed with flying colors! Now we wait for the speech evaluation.

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.


Greg Made Me Do it

Blog that is.

The boys and I went to have lunch with Greg and we were chatting and he said he started a blog. I told him I was thinking of doing the same and he strongly urged me to do it. I have been trying to keep everyone informed on the boys and Ryan’s progress that I decided this would be the easiest way to do that.

So here it is. Enjoy!