Besides not having much time to write about Monday's appointment, it was also almost another non-event. More questions, all of which I am getting used to answering. The center was really nice, with a big huge playroom/waiting room. Jake liked it for about 5 minutes then was ready to go. We spent most of the interview talking over an almost hysterical Jake.
The outcome was simply that they want to test Jake for Autism Spectrum Disorder. Although the lady that I spoke to (I can't remember her name at this time) could not really give me a ton of information, she did agree with me that Jake has many of the symptoms of PDD-NOS she also reassured me that there are huge variances under that particular name. I asked her specifically about stimming and whether or not I should try to stop Jake, or how much was too much, etc. She said that it was a very good thing that I didn't have too much trouble stopping Jake from his stimming behavior by offering to take him outside, etc, and encouraged offering him alternatives without ever punishing him or depriving him completely of an activity which obviously soothes him. I am referring to his habit of laying on the floor for hours, if left to it, twirling sticks or arranging other small objects and making a "click click click click hissssssss" noise with his mouth. Other ways he stims are: twirling my hair or trying to chew on it, peeling wallpaper, hand flapping, and most recently, licking objects that are interesting to him like rocks from the river today. The licking is kind of funny, seeing how as a baby he NEVER ever put anything in his mouth to explore it.
The lady (sorry, name still escapes) who interviewed me asked me how early I noticed that Jake might be "different" and I tried several answers that didn't sound right and finally I settled on "Now that I have a child that seems to be developing normally, I would have to say, in hindsight, I noticed the first few weeks." She put down her pen and watched me try not to burst into tears and said, "Please know that I hear that answer from parents with an older sibling in the spectrum many MANY times. Right now is the perfect age to start therapy, whether you had known before or not." That made me feel a lot better.
I was humbled by meeting a couple of kids that day who were Jake's age but not nearly as verbal or responsive as he is right now. I am so grateful that I have a connection with my boy.
Jake's appointments, five in all, to be tested do not start until August. I am very disappointed in that, but am hopeful that they might open up some more appointments. Meanwhile I am exploring other avenues, including getting involved with the school system special education department to see if they can point me towards some speech or occupational therapy sooner.
Steve ran into Ms. Dixcee, Jake's former pre-school teacher (we had to remove him after a few months) and told her that we were pursuing this avenue and she was thrilled. She has a sibling who had a pervasive developmental disorder years ago and at that time there was nowhere for them to turn, and no name for many of these issues. She told Steve that we were doing the right thing, and that makes us feel good. She's a wonderful teacher.
I keep meeting amazing people through this blog and my AP support groups. People talk to me about their children, some of whom I have met numerous times, and I haven't noticed that they are like Jake. What's going on with our kids is something that a lot of the times only WE notice as parents while spending tons of time with them. A customer of my Bratsacks store found this blog and wrote:
"..... I hope you don't mind me emailing you but i wanted to offer you some support and an ear or eye (in the case of email) anytime you need it.
"I was reading about Jake and just wanted to let you know that you are not alone in this.
I have a son.... with Asperger's Syndrome....he will be 21 in June. Back when I was having those same feelings and thoughts you are now, there was NO ONE or NO WHERE to go for help. It was like reinventing the wheel. Today finding myself parenting 2 LO's who are also on the spectrum it is AMAZING to see how far we have come in diagnosing and getting some help for our children..or at least having a better understanding.
I just wanted to offer you some support and let you know that if I can ever offer you some help in anyway I am just an email away."
How amazing is it that a complete stranger would write such a wonderful thing. I was blown away. Thanks :-)
Some days Jake acts more like a regular 3 year old, and then some days I see more and more symptoms and I don't know what to do. I wish I had a crystal ball for 15 seconds so I could look into his future for just a second. I wish that he would draw again and would tackle other kids his age. Although it was such a hassle for him to tackle, it beats walking circles around the playground mostly looking at the ground or hiding behind a sign. Sometimes I'm very hopeful, and sometimes I have nightmares. Its a constant rollercoaster. Meanwhile.. there's another stack of forms for me to fill out and a thousand questions to answer. And meanwhile.. Jake still makes me smile and laugh all day long and is learning and changing every day. He's a happy little guy with a huge heart and a wonderful personality. He worries his mother to death. What parent couldn't say the same about their own kids? Like I said, the differences are subtle ;-)
