Journal Entry from April 16, 2008

I met with a friend of a friend this past weekend. I’ll call her S. S has an 8yo girl with autism (we’ll call her H). It was really fun getting to know her a little bit more. It was really…reassuring that I’m not alone and that S has gone through the same things and that she, her daughter and her family is OK. Her daughter was super sweet. She has the social awkwardness and her speech is a bit awkward, but she is doing great. S kept saying over and over how much my story is like what they went through with H. They started getting a bit concerned about her speech at 14-15 months, worried about a hearing problem at 18 months and eventually got a diagnosis. It really isn’t that long ago (6 yrs) but she said it was a huge ordeal and a ton of testing to get the diagnosis. That makes me feel a lot better about that part of our process. From start to finish it was only about 4-4 ½ months from the first appointment for hearing to the time we had the ADOS testing. She said it was about a year before they got a diagnosis.

It sounds like Thomas has a bit more speech than H had, but not much. And he doesn’t have some of the sensory issues that H, and a lot of kids have (although he seems to be a little under-ly responsive to some sensory things). S remarked several times about how easily he transitioned in a new environment. This is really one of his strengths but I could see it being a source of a potential weakness as he gets a little older. When he is in a new place, he is so excited and runs to explore, but he doesn’t really care if I am there. I hope that it is just because he is only 2yo, but he is a bit of a “runner”. He is so curious and everything that he just goes to explore, but never really looks for reassurance from me or anything.

Overall it was just a really good time. They have a great family. They have 5 kids and they were all just wonderful. The two younger girls helped entertain Thomas for most of the time. They were really great with him. It was cute. The 4yo kept trying to give him toys and show him things and most of the time he would not notice or respond when she called his name, but she kept trying. When he didn’t respond to his name, she would bring the toy around in front of him until he noticed. It was really cute.

I asked S about potty training because that is something that we are looking at starting soon. I think I shouldn’t have asked because I am rather scared now. She said H wasn’t completely PT until she was 6. That is so scary to me. I think one of my biggest wishes for Thomas is to be self-sufficient. That’s just one of the things that is generally important to me. We talked to M with the Play Project last night about PTing. They go by Greenspan’s theories for bridging interaction through play. She said his book “Engaging Autism” says that a child with autism is not ready for potty training until they can answer “W” questions (who, what, when, where). Sam and I and M all agreed that we didn’t think that was true. There are some autistic people that remain non-verbal, but are still potty trained. I’m not sure we are completely ready for it, but I am looking forward to trying. We are not pushy people and we’re taking a pretty relaxed attitude toward PTing so I don’t think it will be an issue. I’m just not sure he will understand right now. I think I’d like to try to work more on PECS and the visual schedule and become consistent with that before we try. I have heard from most that the visual schedule is an integral part of the process. Since I don’t think he understands a lot of what we say, or at least I don’t know that he does, I think having a visual representation of the steps will be important in understanding the whole concept.

This Saturday I have a senior from Bethel University coming over to help out with a couple things. I need to figure out exactly what I want her to do. I had a lot of ideas but now that I am trying to plan something, my mind is blank. Grrrr….I’ll need to go through the materials from the autism society classes we went to and figure something out.

Also, on Thursday I was talking to the director of the daycare. I was telling her, again, how great all of the teachers have been and how hard and really devastating not only getting the diagnosis but then not being able to find anyone to care for him during the day. This daycare has been wonderful. And I have observed a couple times when they’ve been outside and not seen me and they really treat him like the other kids. That is important to me, especially holding him to the same behavior standards. When he took a toy from another child, she was there right away and took the toy back and explained that “we need to share and he was playing with that”. It is important that she explains what he is doing wrong and not just taking it back. He may not seem to understand, but I think he understands more than we would think. And even if he doesn’t understand it now, he eventually will and it is important to keep connecting the words with the actions. That’s important. Anyway, I was talking to the director about how well they are doing with Thomas and she said she was thinking that when he gets a bit more comfortable with his therapy, she’s going to try to get a couple unpaid interns from the college to work with him a couple more hours a week. It’s a great experience for the student, and it’s always good to get more people in there helping out and it would be great having a couple more people regularly reinforcing the therapy ideas. I think the school therapists and M with the Play Project would all be more than happy to work with the interns a bit to give some guidance. I couldn’t believe that she was already planning on bringing them in. Talk about pro-active. I was thinking that maybe down the road, paying for one of the autism society people that lead the skillshops to go to the daycare on one of their staff development days or monthly meeting or something, to give a little more education on how kids with autism learn differently and a variety of approaches to try. I’m really excited about all that Thomas has available to him right now. I think he’s going to do great.

Oh, I almost forgot, we are getting a private speech therapist for Thomas an hour a week at the daycare. They said that they wouldn’t be able to get him in until June, but I just got an email yesterday saying that they may be able to get in a couple days in May. That sounds great to me. On a side note, I think the vitamin supplements are helping Thomas’s health. Sam and I both got a terrible cold last week, but Thomas never got it. I was really excited about that. He’s had a minimum of 12 colds this winter and the number could easily be closer to 20. We’ve both missed so much work because of it and I’m glad that his immune system is finally getting stronger. That’s about it for right now. I’m feeling very positive and excited about all that’s going on.