I met with Sam's case manager and teachers last week. He needs a re-evaluation for primary school. His speech therapist, who I love, has been testing the FM system with him. SHe feels it is not hleping and, in fact, might be making things worse for him. I am not sure how to react. I don't feel that a coulel of weeks is enough time to evaluate something like that but the loaner is only available for a month. I am not sure whether to argue about this. I was so sure it would help and it is hard to accept that I might be wrong. But, I have faith in this speech therapist so I think on this issue, I am going to defer to her and not make a stink.
This is a hard time of year for a few reasons. As the weather warms up, we get the pleasure of going outside but along with that come feelings of intense grief and jealousy (at least for me). It is hard to watch the neighbors standing outside chatting while their kids ride bikes, play ball, and/or chase each other. I used to be out there with them. We can't do that anymore. Sam would run away, eat someone's plants and generally get in trouble if we tried. So we stay in the backyard. We are lucky that we have been able to make the yard a usable space. We have a swingset, trampoline and a deck so it is a nice place to play. From our backyard I can see the local park. It is little league season. Sam can't play. He doesn't care or even know what he is missing but it makes me sadder than you can possibly imagine. I know that I am griving for myself more than for Sam - like I said, it doesn't matter to him. I am sad that he can't understand or enjoy a sport, I am sad that he can't make friends or be part of a team and I am sad that I can't bond with the other moms. It is very lonely.
I try to get us out of the house as much as possible when the weather is nice so we go to fenced in playgrounds in nearby towns. I have to picked fenced in places because if Sam takes off, I ca't leave Maya to tke off after him. People tend to stare at Sam. I don't blame them. We are born with the habit of tuning in to what is different. No one has ever said anything hurtful. I guess I am lucky. Sam tends to put sticks in his mouth at the park. I try to bring him nice clean straws to substitute. SOme parent will usually signal to me and tell me "Did you know he has something in his mouth?" I know they mean well but yes, I know. If I could change it I would. Kids often get a little freaked out by Sam's hooting noises and they often very loudly yell to mom, "Why is he doing that?" Again, I don't blame them, they are just being kids. Hopefully their parents will use it as a teachable moment. As Sam gets bigger he is more and more conspicuous
No real news on the medication. I don't see huge changes at home - a bit more intense eye contact. School reports changes (and I didn't tell them about the new med at first). They feel is concentration has been better since we started a few weeks ago. We will talk it over with the neurologist in a couple of weeks.
Sam will be five soon. When we entered this world of Autism, I thought we would be considering mainstreaming by now. We are so far from that possibility. Like I said- grief.