Doing our part for science & autism research

So, our family met the criteria for an Autism study and I decided we should do it. The benefit for my family (outside of a little bit of compensation) was that they told me I would get copies of all the evaluations from the day. The study took place in NY and it required the whole family to participate. I'm fairly certain in the no less than 200papers that I filled out that there was a confidentiality clause in there so I'm going to discuss things pretty vague.

Overall, I am glad we participated but I found the experience draining and so much could have been improved. The study is looking at genetic differences/mutation where there is a child with autism and a sibling without it. The day started off with a bang - lovely traffic getting into the city but we made it in with only minimal delay. However, Alex became agitated and started asking to go home after we parked and had to walk the 3 blocks to the facility. Seriously, these are families with autistic children and young siblings and expecting them to walk even just a flew blocks should be disclosed. I expected since it was at a hospital that there would be parking right there but wasn't thinking that this was NYC - a shuttle or reimbursed cab ride would have been appreciated. Oh, and they didn't reimburse the parking or the parkway tolls which I will be following up with them on.

When we got into the study we had to fill out more paperwork (aside from the giant stack that my husband and I - as well as my son's teacher already had filled out. These were releases that had to be signed in duplicate. Then they took pictures of us including our extremities which made me wish I'd gone for a mani/pedi ahead of time!

Alex had some difficulties pairing with the ladies doing the testing but he was completely out of his element in terms of a different environment (wierd) and new people, etc. He did complete the testing though, and I look forward to seeing all the results. One thing that doesn't surprise me at all is that they feel his diagnosis should be more High Functioning Autism instead of PDD-NOS, that is not news to me.

Thankfully I had brought a backpack with reinforcers in it and snacks because though they assured me that there would be gluten and casein free food available for him at lunch time it was extremely limited. I was glad I had bananas and juice and other snacks like gfcf pretzels in his backpack.

The day concluded with "the blood draw". Before doing the blood draw we had to walk - yes walk... with a 4 year old and a child with autism several more blocks over to another facility of the hospital. Seriously inconvenient and dangerous considering the flight risk. I was furious. When we got to the lab room they started with my husband and that went pretty quickly. Next they wanted my daughter and I got the job of holding her. From past experience I knew that she would be difficult and scream a lot and fight it. The lady required multiple jabs in order to get her blood and it took forever and a day. By the end of that I wished I had on a tank top and shorts I was sweating so much. Alex was next, and my husband was going to hold him since he is so strong. The screams were so loud that they could have probably been heard in New Jersey. After 15 minutes or so of the screams my husband came out and told me that "they didn't get enough". So, in a nutshell all of the data we had given and testing Alex had gone through - plus Belle's suffering for the blood would have been moot. They still wanted my blood though and we were talking to them about them possibly sending someone to our home to collect it. After they were collecting my blood (oh by the way, I'm very proud that I didn't pass out - especially since I hadn't eaten lunch) and we were discussing how to proceed with Alex - he walked right into the collection chair and sat down with his Wall-E and Nintendo Ds.

We made a decision to try a quieter and cooler room that had a bed in it to try him laying down and this time to have me be the one instead of my husband. So, off we went. He wasn't going for the hospital bed but his compliance was a lot better. We talked about what was going to happen and I asked him what he would like to buy with his giftcard that he would get afterwards - Wii & DS games, a movie - I even told him he could have my giftcard also. We then took his Wall-E plush and pretended to take Wall-E's blood. He came over with Wall-E and sat on my lap and said he wanted it in the chair and not the bed and we went from there. I told him that instead of screaming that he could say WAAALL-EEEE or EEEE-VAA and to look at Wall-E and not the needle. He did super and got the job done. Because they'd previously blown the vein the first time around they had to do it in the top of his hand (OUCH). Ultimately though, we got through it.

Of course at this point we then had to deal with commuter traffic back to Jersey - and exhaustion.

What a day.