Saturday, November 22, 2008

Perspective

This week I posted alot about the move to Lexington, and the angst that we are having pre-move.  I also spent some time writing about mine in particular, and how I’m trying to keep all things even steven.

Well, a trip to the Marcus Institute will help cure you of it. 

As I worry about the short term hiccups we’ll have with Super D as we adjust to the new house, school, market, life….I walk in the Institute to pick up his prescription…and you know, there’s a set of parents there with their severely autistic boy, rocking back and forth waiting to get on the elevator with me.

Both parents have bite pads covering their arms as they take him to his appointment.  He’s not violent at the moment, but who knows in five minutes if he gets nervous or scared.

It got me to thinking that really our issues aren’t so bad. We’ll adjust. We’ll grit our teeth and we’ll worry…but for this family would a move anywhere really change what they are up against with their child? How do my worries look to them? 

Their life is so much harder than mine, maybe I should be thankful a bit that I have a child that can communicate on a certain level, who is in mainstream classrooms and loves his super heroes, and maybe I should quit worrying so much about what isn’t perfect, and be thankful for how good we do have it at this time.  And heck, I don’t even know what it will be like – I’m completely speculating!

Is it the Thanksgiving season?  Maybe.  Or maybe it is just going to a place that helps you keep everything in perspective at the right time.

Posted by Jerry in 02:59:30 | Permalink | Comments (1) »

Tuesday, September 23, 2008

The Dr. Amy Visit

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.

Posted by Jerry in 01:51:23 | Permalink | Comments (5)

Tuesday, March 11, 2008

Prozac

Today we had a Dr.’s appt. with our special needs pedetrican discusssing Demetrius’ frequent fits…and now the squealing is becoming more prevalent and louder. It’s related to his OCD issues…We’ve talked with Dr. Pakula about this in the past. The suggestion is to put him on about 10 milligrams of prozac to see if it makes these fits more controlable. The point is that the fits are a result of his not being in control of his situation (such as not being able to watch TV or play computer when he wants) or when things change on him too quickly. Further, while he is comfortable throwing fits here at the house, often in places where he is less comfortable he just starts to squeal loudly… like at the bus stop. (In fact, he’s having a major meltdown right now because he has to do homework and we’ve turned the TV down!)

Important point, will be in addition to his ADHD medicine, Vyvanse.

We discussed the side effects, liver, stomach or headache issues, and the potential for suicidal tendancies. Dr. Pakula believes at his age, and with his ‘awareness’ this isn’t an issue, and that the dosage we are thinking about isn’t enough to create these issues in an 8-year-old. He should be steadier than that of an adult (that being, the peaks/valleys of if he misses a day won’t be as bad). We should know if it is working in about two weeks, based on his size/weight/dosage.

I’m wondering if any of you out there in ‘blog-land’ have your autistic/aspie child on prozac and what are your experiences? Good/bad? Suggestions/thoughts that you might want to share? Love to know….

Jerry

Posted by Jerry in 22:50:56 | Permalink | Comments (4)

Tuesday, November 27, 2007

Disability Versus Difference?

We had an appointment with Dr. Pakula this morning. We are trying to get Demetrius’ new meds calibrated (we don’t think he’s taking the right amount, so we are going to tweak it up to see what comes of that…) and we discussed a few other things.

One thing she said kind of stuck with me, she really doesn’t see autism for Demetrius being a ‘disability’ so much as something that just makes him ‘different’. Though I like this, and it something that I can embrace…I really didn’t have the time (nor did she) to press her on what she meant here… because the Good Lord Above Knows – with all the IEPs and therapies and constant struggles we have, it is certainly more like a disability than just a difference.

McEwen, Christoper’s Daddy, Marla..other regular readers out there…thoughts on your own kids and any observations from those of you out there that just read this blog but don’t have an autistic/special needs sprite running around your house….please chime in…

Oh, and Christopher’s Daddy, lets grab coffee soon….

Posted by Jerry in 17:29:11 | Permalink | Comments (6)