We had our meeting with Dr. Amy yesterday at the Marcus Autism Center (changed the institute’s name). We discussed the fits, and anxiety, and irritability, and stubborn streak. In fact, Dr. Amy got to witness this first hand, as Demetrius pestered her endlessly about her giving to him a robot toy on her desk (by my count, he asked her for it, in the length of an hour meeting, 12 times). She did note that he really was trying to sweet talk her by smiling and changing the tone of his voice from ‘Pleaasseeee’ to a much ‘sweeter’ request.
First of all, we see that Demetrius has grown two more inches and gained a few lbs. – so we needed to up his prescription of Vyvanse. With this, we should be able to see him making some better decisions in controlling his impulses and controlling his fit-throwing.
We are also implementing the rewards program again. To get him to behave, he’ll get his rewards again. If he doesn’t, no stickers, small toys, etc…Do your homework without whining, you get to have ice cream for dessert, or a special treat on the way to your nature walk, etc…this feels like a step backwards. But really, this is a Jerry problem, not a Demetrius problem. It is only that we did this when he was 3, 4 or 5 – but if it helps him become successful in controlling himself and getting back on track – then it will be worth it.
We talked about his safety, the roof, falling through the basement ceiling and Dr. Amy called it: Demetrius is intelligent (changing the tone of his voice to get the robot off of her desk), but he has very little judgment at this point of his life. You can tell him 50 times not to do it, he’s going to do it when he gets the itch.
It is in this conversation that we kind of switched from Demetrius to the rest of the family. Dr. Amy noted that because of this, we have to watch him closely, the same at 8 years old…that we did when Maya was 3 years old. But he’s bigger, faster, and more a danger to himself (see roof) than a three year old.
We discussed the fact that this has to be amazingly tiring. If we don’t go outside with him when he’s out playing, he’s likely to end up three blocks away. If we build him a fence, he’ll figure out a way over, under, or around it. Kim has to be on, all the time, until he’s asleep. Jerry’s on all the time. A fence doesn’t solve the problem…because this problem can’t be solved.
So what to do? We are going to explore options to get some help for Mom and Dad, so we don’t go crazy (she’s the first professional that’s ever just said it is wearing on us). She also mentioned that parents she’s had with other children who ‘bloom’ like Demetrius in their autistic tendencies often have to, need to, live around their families. And as you know, we have considered over and over moving closer to family, so that’s probably back on the table when the economy turns or an interesting job pops up.
I did bring up the fact that he is an eight-year-old boy, and many boys this age do stupid things like jump on the roof…she heard me out, and immediately told me no, he’s not like other boys. He just doesn’t have the ability to judge and doesn’t have the internal buttons, fear of the activity, fear of getting in trouble, etc…to stop him from doing something like this. He’s not like those boys who are exhibiting bad judgment. Demetrius lacks the ability to do this. Unfortunately, I have to agree. For the fact that he got in enormous trouble for going out on the roof, and we nailed it down, and ½ hour later he was trying to open it and go out on the roof again….sigh.
We are going to get Maya into some sibling sessions over at the Emory Autism Center. She needs to talk to someone she’s not related to about her brother, and talk to other ‘regular’ boys and girls going through the same thing she is going through.
Lastly, it was suggested that Kim and Jerry take a few family therapy sessions. We can find a therapist that ‘handles’ parents who have highly stressful lives with special needs children. Of course, this is probably last on our list. Taking care of D’s meds, and little Maya so she better understands what she’s dealing with in regards to her brother, are more important.
Finally, we also discussed school. We are going to ask the teachers if they can tweak a few things in his daily schedule. These include:
• In the course of his long day (with those long sitting sessions), getting him more frequent ‘physical breaks’. We need to find out how this is going now, as neither of us are sure what this looks like right now (We’ll adapt when we find out more)
• No more going to the library in the morning before class starts. He needs physical activity to better focus. D’s teachers and aides have given him this choice, we agree this isn’t a choice he needs. He has to get his physical energy out so he can have a better day
• When he is waiting for the bus after the long, hard day – get him up and moving
• At some other time in the day, test to see if he can get to the library on his own, and get back to the class, without his aide’s help
It can’t be overstated that Demetrius needs some ongoing and somewhat vigorous activity in his mornings to get him focused for the day. If in fact we can do this, I’ll be real interested in seeing – in conjunction with the adjustment of his meds – if we see a change in his focus and frustration throughout the course of his day.
Dr. Amy meetings are always interesting and educational.
