Thursday, April 8, 2010

A little More Positive

I spoke at Barnard College a couple of days ago - it was a developmental psychology class (one I took when I went there). I was just there to give an overview of Autism from a paretn's perspective. I had a great and I met some great students. One of the things I touched on at the end of the presentation is the endless tug of war between grief and acceptance when you have a special needs child. In the moments of grief, it can feel all-consuming. THe life you planned work, worked for, felt you deserved is gone. You rage against this new life. It is not like getting stuck in Holland when you planned on going to Italy (I don't care for that essay). It is more like never getting to leave the airplane. All the other passengers get off and head to their destination but you are stuck and feeling more clostrophobic by the minute.

On the other hand, there are moments of acceptance. TImes when you can relish your child's efforts and accomplishments. The highs are higher because of the lows. I remember that Sam potty trained nearly a year ago today. He had just turned 4. I couldn't believe it was real. i was just entering panic mode because he was about to outgrow size 6 diapers. But he did it and it stuck. I try to remind myself of moments like that on the days that I feel tugged toarads grief.

Not an Autism post

Back when we thought we would adopt (probably from Ethiopia) I began following this blog.

They are doing a give-away for a piece of jewelry by a great artist on Junkposse jewelry - love it!

We don't know if we will still adopt. We are looking into foster care adoption (which I know probably sounds strange after my last post) and we have the initial paperwork. More about that later.

Wednesday, April 7, 2010

Warm Weather

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.