(HBOT 48) Intense and Opinionated

During the past few weeks, good friends have told us "if I didn't know that Jonathan had a problem, I wouldn't know", " he seems like a normal child". Friends with other autistic kids kept saying to me "he speaks so well", "he relates and looks at you in the eye" and other comments of this nature. One person said to me "how do you know when to stop and let nature take its course".

When you have a child with this disorder (with any behavioral and developmental disorder), you often put a short-term and long-term goal when you commit to therapies. Each therapy is different and each therapist sets different goals. But when it comes to biomedical therapy, it is hard. DAN! doctors (particularly mine) is focus on certain developmental milestones. And I mentally worked towards that goal.

As you learn more about the problem, and you become more aware of the many many problems that your child has, you tend to develop your own goals. And your goals (at least mine) shift quickly as soon as they are reached. "Oh my gosh, what would I do to hear Jonathan speak, or play, or eat, etc." And as he mastered them, my goals became more complex.

Long story short to try to explain my frustration as I reach road-ends and feel stuck. Jonathan's DAN! told us when we met him "when he starts asking why questions, that's when we stop worrying". Well, he is asking some complex why questions and I am still worried. My husband bought an expensive "Johny Walker's" blue label bottle to celebrate the "why" questions, and let me tell you that it is still unopened. So during the last meeting, Jonathan's DAN! Dr. he said "well, when he starts asking how and who questions, that will be the sign". And he is asking those questions, yet I am still very concerned.

I realized today that his biggest problem today (and it will change in 6 month, at least in my list of priorities) is that Jonathan cannot control his emotions, he has a horrible time relating to social situations, and his nervous system controls him instead of him controlling it. What I mean by that is that he cannot regulate how loud he speaks, or whether he is interrupting other people's conversations. He is not aware nor he cares what others are doing. But he is empathetic. Today we went to a restaurant, and he ordered 2 apple juices. He said to the guy "can we have 2 apple juices please. One for me and one for Vanessa". Then he turned to Vanessa and asked her "Vanessa, do you want apple juice or something else?" and Vanessa said "I want orange juice". So Jonathan got worried and started looking for the guy to tell him to get OJ for Vanessa. But then she changed her mind and he was relieved. So to me that is empathy. Or maybe not and I have that behavior confused because if the baby is asleep, he can walk by and ignore her, scream without thinking that he could wake her up (even after I told him in several occasions).

Today in particular he was very intense about what he wanted. He wanted to buy a new Leapster cartridge and insisted for hours. I told him no in many occasions. He had a meltdown. But after a few hours, he stopped asking. He was intense about setting up the microwave's timer. He did not pay attention to the hot item despite how many times I pointed them out to him. He was focused on that microwave. He then wanted to play with my computer and insisted for hours on it. I didn't let him. I lost my temper at some point because he cannot yet control his tone of voice and he sounded very demanding and rude when asking to do something he wanted. I told him no, he couldn't talk to me like that, etc.

He is abnormally loud when he speaks. And he make very "autistic" like type sounds when he is happy, amused, surprised, scared, etc. He has become easier to deal with, we can go out to places with him, but we have to be very careful because he is hyperactive now and can break things or push people, etc. When he speaks, his language is very dull. He sounds like he is mentally retarded, even though he is not. I am only talking about the intonation though, because some of his comments are very smart. He is fixated on his academic type subjects and electronic toys. His stubbornness may be a combination of autism (due to routines that he may really enjoy to adhere to) and genes.

So how do we take those behaviors away? I know the answer is more biomed and RDI. I also realized on Friday that my next priority is speech therapy. We need to teach him how to use the proper intonation. But I wanted to log this information for my records.

So my goals keep shifting. Yes, I am happy that my so is very high functioning. My previous goal of conversation language is shifting. He has now developed a form of conversational language. I thank that to many therapies and therapists. But I have new expectations. Each becoming increasingly harder to achieve.

I feel a bit helpless as I don't have so much time these days to research and I feel that the time may be running through my fingers. I don't want to see be Jonathan like he is today when he is 10 or 15. It would break my heart. But I don't know how to make the time to research and the money to try new therapies. Time (which is a luxury these days) will tell.