The Beginning

This journal entry is from Feb 18, 2008:

I've been thinking about starting a journal for a while now, but I decided that it's just time. We are in the process of getting an autism diagnosis for our son, Thomas. He just turned two the first of February. I'm having a much harder time with this that I ever would have thought.

Where to start.....He hit most of his early milestones on time. He crawled at the late end of normal. He walked at the late end of normal. At Thomas's 15 month appt, he had about 3-4 words that he said but it was pretty infrequent. He loved clapping, but he wasn't really waving. He could...he just did very rarely. He was very affectionate, the center of attention, and very social. He has always been a really happy smiley kid. At 15 months, the ped said that he was a bit behind with language, but just wait and see what happens until the next appt at 18 months.

At 18 months, he was at about 6 words. He stopped waving entirely. We were concerned about hearing, but knew he would come running when he heard Veggie Tales start, so we knew he was hearing somethings. I figured it was just me being overly concerned. His doc at the 18 month appointment was a different doctor and she said that he was just fine and seemed to be doing just fine. She just blew off my concerns about his hearing.About 2 weeks later, he started at a new daycare for the first time (we'd always worked opposite schedules so we didn't have to have daycare). By the second day, the new daycare lady said she was concerned about his hearing and I knew that there was something wrong. And finally someone else thought there was something wrong too. We made an appointment for a hearing test which took about 5-6 weeks. The hearing test was normal.

I found out about early intervention which here is done through the school districts, so I made an appointment for a screening. It was about 2-3 weeks for that appointment. She agreed that he was very behind with both comprehension and expressive language. He was at about a 6 month level. He was a bit behind with both fine and gross motor as well, but a lot of that I think was because he didn't understand what she wanted him to do with the things she was giving him. I still wasn't too concerned, because he would get speech therapy and catch up, and it was all free (which was important since our crappy insurance didn't actually cover anything). And the screening was meant for 21-24 months in age, and it was a week before he actually turned 21 months. On her way out the door, she noted that he waved his arms when he was really excited, and asked if he did that a lot. He'd always done that, since 5-7 months or so. I asked if that was something to worry about and she said no and then left, but if it was nothing, then why did she mention it? So I started asking around, and everyone always mentioned autism. But I knew that couldn't be it. I have a high functioning autistic brother, and they are nothing the same. And Thomas is so social and is always smiling and makes great eye contact (although he hadn't during the screening, but that, I was sure, was because he was excited about the new person and new toys to play with).

We ended up waiting 7 weeks for the speech assessment. The day before the appointment, Thomas pulled a little girl's hair and the daycare lady just freaked out about it. He wasn't trying to be mean. She said he was just laughing, and just didn't understand that he was hurting her. She then told me that she wasn't sure how much longer she would be able to care for him. By this time, I was finally getting past my denial, and knew that autism was probably something to look at. But she told me a lot of things that day that really would have been nice to hear a while back. She said that he almost never had good eye contact with her. Up to that point, I'd never really had that problem with him. We were nervous starting him in daycare because he'd never really been around a lot of other kids. We tried to have playdates, but he wasn't really used to that on a regular basis. And she had always told us that he was very gentle with the other kids and occationally she'd tell us how he'd had particular fun playing with another kid that day. I didn't find out until the day before the speech testing that yes, he was very gentle with the other kids, but that was mostly because he never played with the other kids. I think that would have been nice to know before then.

Anyway, the speech assessment was very good. They agreed that they saw a lot of red flags for autism. And we made an appointment for an autism specialist through the school to test him. In the meantime I was doing a lot of research and finding a lot of really positive things about early intervension and dietary intervension and supplements that would help and that a lot of kids by the time they get to school you wouldn't even know they were autistic. The autism screening really got me back to reality. He did a lot worse in the testing than we thought he would. And the when she was giving us the results, she was so negative. She wasn't even cautiously optimistic, she was more negative. She was nice about it, but I still cried the whole way home.

The following week on Friday we met for the IEP meeting. And to back up one day, Thursday evening when I picked Thomas up from daycare, she had a letter to let us know that she was dropping us. She wasn't going to give us a final date, but wanted to aim for 3 weeks. We were told that after the IEP meeting, therapy would start the next week, and they would do it at daycare, which she'd never said would be a problem, but when she gave us her notice, she said that she'd rather not have them come to her house. So anyway, the IEP meeting was OK. They didn't really sound like they were going to be intensive about it. But I figured I would wait and see what happened. They kept stressing that we can change the plan at any time. The following three weeks were incredibly stressful. I had been at my job for almost a year as a contract worker, but suddenly was hired on directly, plus things were getting really busy at work (and really haven't let up yet), we were researching therapy and diets and stuff, filing bankruptcy, and having to find daycare all at the same time. It was horrible looking for daycare. I kept finding ones that were just over the school district lines, and they won't go over the school lines for therapy. Or, the people weren't comfortable with caring for a child with autism, or they didn't have any openings. I found one that was comfortable and had lots of experience, but she mostly cared for severly disabled children. And that wouldn't be a very stimulating experience. We finally found one that has actually been pretty good. He's been there two weeks now. He's still adjusting, but he's doing OK. About the time of the autism testing, he started really regressing overall. His eye contact is non-existant some days. Right now he is down to "mama" and an occational other word thrown in. And occassionally he'll sign "more". He's getting worse at interacting with other kids from what I have seen, but maybe I wasn't really seeing it in the first place. He's also started spinning in circles, or closing his eyes and shaking his head back and forth (stimming). It's harder to get his attention, harder to get him to respond, and he's suddenly become really picky about what he eats. He used to eat pretty much anything. And about a month ago, he started getting picky and at the new daycare hasn't eaten anything other than fruit, bread and the occasional afternoon snack. We missed a couple therapy sessions due to illness, both ours and theirs. But we should be on track now. I'm very disappointed that they are just going to combine the developmental therapy and the speech, so he really just gets one hour a week. We will try to bring him to a play group for autistic toddlers to help give him a little nudge in the right direction interacting with others. We have to wait till DH, Sam, gets transfered to days. They said no more than one more week (and since it has already been amost 4 months since they told him he got the transfer, it is about time).

There is also a research project going on right now, the "Play Project" that uses the floortime method and a couple other play based therapies. They will be doing that in our house once a week in the evening. We are also trying to change to the gluten/casein free diet. I figure we'll give it a couple weeks to see if it makes a difference. It helps some kids, and for those kids it is a huge difference. I am hopeful that it will help because of celiac disease running in my family and schizophrenia which runs in my DH's family which they've found related to gluten/casein intolerance.

I am feeling rather drained now. It has been a long couple months. It is going to be a lot of work for a long time coming, and I'm not sure I am ready. I remember when I first found out and I just cried that I just "wanted my kids to be normal". It sounds non-PC, but having a brother with autism, and knowing the "special ed" kids in school growing up, I know if will be a lot of work for him. And I know that things are different that when I was in school. I just don't want him to grow up feeling like an outsider. I don't want him to get run down by how hard he has to work compared to the other kids. I don't want him to get teased. I want him to be able to grow up and go to college and get married and have kids of his own and have a happy life. I know that he doesn't have to do all those things to be happy. And my most basic wish for him is that he be happy. I just wish he could escape all the work and challenges that is ahead of him. But I guess we all have our own issues and our own challenges. I know that he'll be fine. I'm just worried. One step at a time, right?