Another Update

I've thought a few times about deleting my previous post, but just decided to leave it. It seems like my family and I are feeling a bit overwhelmed right now and traveling through a rough spot. Steve is having a hard time dealing, and I feel like I need to keep everyone happy at once, and that I'm failing miserably.

Jake is actually doing really well. He's doing good in school and seems to be really enjoying it. I have yet to see any signs that he's having the least bit of trouble adjusting. The notes from his teachers in his notebook are always positive. His second horse riding lesson went even better than the first. He enjoyed sitting on the horse and being led around a field.

Jake has lately been showing even more sterotyped behavior than he used to. Questions that i was able to answer "no" to on the various autism questionaires are now becoming "yes's." Jake didn't used to repeat questions, but lately he does it a lot. He also recently learned to say "Yes!" and everybody got so excited that now he thinks that this is the answer to every question. I was playing with some easy puzzles with him, putting them together and then asking him questions about the pictures. Our conversation went as follows:

Me: "Jake, what color is the parrot?"
Jake "Jake, what color is the parrot?"
Me: "Jake, what color is it?"
Jake: "Jake, what color is it? YES!"

Also, in the past Jake has lined up objects or stacked blocks, but hasn't really gotten frustrated if they are disturbed. Recently he gets really agitated when things won't line or stack like he wants. He constantly lines things up... searching for MORE cars to line up, or trying to line up everything in the entire room. If blocks fall he gets very upset, and an even more frustrating trick that he plays on himself is trying to stand books up on their ends. Some thick books will stand up, but he even tries to stand the thin ones on end. He gets very very upset when they won't stand up.

The verbal stimming is about to drive us to distraction. Jake has a few.. the "whooohoohoo" sound, the hissing and clicking, and he can imitate the blinker clicks on the car with amazing precision. The last one is about to make his father and I lose our minds. He does it all day, and LOUD! Its amazing the amount of carry he can get with that 'bump click' sound. We've just started telling him to cut it out. Its unbearable. I think sometimes that these things in themselves might not be as annoying, if it weren't for the fact that its a constant reminder that something is very wrong in that little noggin of his.

The one thing that the therapists, the literature, and pretty much everything else I come across about autism therapy, is that Jake needs to be engaged for most of the day in order for him to develop and grow. I am constantly reminded of this fact. When we are at home it takes only minutes for Jake to slip into stimming behavior if left alone. In the past I feel like I've taken advantage of this fact in order to get things done that I needed to do. Now I feel guilty if I spend more than a second doing anything but engaging him. When he stims he is loud: clicking, hissing and popping his tongue, and if I ever slip off into another room I can hear him. All I have to do is say "Jake, lets play a game" or "Jake lets go outside" or "Lets go for a car ride." to bring him out of it, but it can just be so exhausting. But if I don't engage him, I feel like I'm just letting his brain rot and letting him slip further away. I feel like I've wasted so much time already, and that I've done him a great disservice by taking advantage of the fact that he "always liked playing by himself." I will never get rid of the feeling that so much should have been done so much sooner. I feel like I have to make up for lost time by doing as much as I can now. Part of the reason that we are always going out is that I have an easier time working with Jake when we are at the park or the aquarium or just about anywhere. It comes natural then. At home its forced and he is so difficult to engage. It usually ends in frustation on both of our parts. I am grateful for the couple of hours that he goes to school. At least I can hope that he's learning there.

Meanwhile, Steve is voicing frustation that we have absolutely no family support. I correct him and say that my father is always available to talk about it and give support. Otherwise, we're pretty much screwed in this department. Steve's mother and father raised Steve's brother, who was born profoundly deaf and who Steve is beginning to believe has some social delays as well (Steve remembers VERY vividly that his brother exhibited echolalia). He feels like they SHOULD be a source of support, but they are quite happy to just not talk about it. The rest of my family is the same, prefering to avoid the subject or just to avoid us altogether. He says he feels alone. I know how that feels, especially since it took me two years to convince anyone, including my husband, that Jake has issues.

Sometimes I think we just need a break with each other. Steve and I have been out to dinner without the kids once since Manny was born... we left for a grand total of two hours.

I guess I'm using my blog as a bit of a whine-fest and vent vehicle lately, but sometimes it helps me to go back and read.