ADHD Blog (and Tourette's and Asperger's)

Government help refused

Tue, 27 May 2008 22:49:01+0000

So, basically, we have an ADHD child with Tourette's and Asperger's. He has trouble in school and, at age 15, takes so much energy out of us that we basically crash on our bed every night, exhausted. Our federal and provincial governments have programs to help parents who have children with developmental issues.

Well, according the the provincial government, A. is normal and we can not benefit from any help.

Yippee.

Thankfully, we're getting a bit more out of the federal government. A bit.

Well, at least we're lucky enough to have a comfortable bed.

I asked you nicely...

Wed, 7 Mar 2007 11:37:23+0000

A friend of mine who also suffers from Aperger's once told me that being asked "but what are you going to when" was one of the things that created a high level of stress in him when he was younger. I sincerely try to follow his advice and not to ask such a question when A. is behaving in a particular manner or when he says things that, socially, make absolutely no sense,

Unfortunately, sometimes it slips out. Sometimes, I just can't find another way of making him realize that certain beliefs or opinions aren't going to work in the real world. This occurred once on the subject of money. Being thirteen, A. understands how money is used. It's the why that displeases him. Or rather, is the "why should people have to work to get what they want? People should give others (namely him) whatever they want whenever they want it".

I try not to go into deep financial considerations and rather try to explain things in a way that would touch him. I tell him, for example that there are things that he wouldn't want to do and that few people would enjoy doing, but that must be done. To encourage someone to do these things, we give them money. The money can then be exchanged, etc, etc, etc. He kind of understands that, but still feels that it's unfair. Truthfully, he's probably right. Many money matters are. But that won't change the fact that he'll someday need to work to make some money.

We've had this conversation many times. He won't budge. Logic seems to have no place here. During one such conversation during which he explained the fact that he didn't want to work for a living, I said "You like to have things. You want to get new video games. You like going to the restaurant. Whether you like it or not, you'll someday have to pay for these things. How will you do that if you have no money?".

The terrible question had been asked. I could find no other way around it. His answer came with all the innocence of a child who doesn't understand certain things about social life.

His answer was "I'll ask someone to give me some money". When I told him that the person would most probably answer with a resounding "No", he told me he'd insist and say "I asked you nicely to give me some money". What followed, for me, was a moment when I wondered if he was serious. He was, very. When you have a child with ADHD, Tourette's and Asperger, you often wonder what behaviour stems from what condition. I know I understand very little about Asperger's, so I might be wrong, but I felt at that moment that his belief came from that condition. That his world was a different one that I had to understand, but also that he had to learn to understand ours. And it's not going to be easy.

ADHD Summer Camp part 2

Fri, 26 Jan 2007 16:38:38+0000

If you haven't read part one, please do so before reading this one. It's just below this current entry.

The second year went just as well as the first one. A. generally behaved well during his time at the camp and the head psychologist always had some nice comments about him. Add to that the fact that Sandra and I could go out a bit, have some fun, relax, and we had a winning combination.

By the third year, we felt pretty confident about leaving A. for nine days. Of course, things never go as expected. We got a call on the second day informing us that an "incident" had occurred, but that our child was not implicated. Still, social services might call to ask us a few questions. Hmmmm...

Two days later, a bit before 7 AM, we got another call from the camp informing us that all activities were being cancelled and that parents had to come and get their kids. O... K... That didn't sound good at all. So we strapped ourselves in for a quick (three and a half hour) drive. Once we got to camp, we learned that the head psychologist was being accused of molesting one of the kids. The staff was appalled and couldn't believe that man would so such a thing. We were also very surprised, we truly trusted this man. We asked A. if the man had ever touched him or tried to. He said no and strongly believed that he was innocent.

Skip forward about a year and a half. A few more boys came out and accused the psychologist of having touched them. The preliminary investigation evolved into a court case. And finally, the man confessed to having had sexual contacts with three boys. We also learned that A. had been alone with him at least once (an isolation to calm A. when he was too excited) and that he had tried to tickle A and that he hadn't been thrilled by it. This might seem innocent enough, but we learned that some abusers use this technique to test the boundaries of a child. Who knows how things might have occurred if A. had let himself be tickled more.

This man had a solid reputation and our confidence. This brings up a problem for which I can find no solution: how do you know who you can trust with your child? As far as we are concerned, there were no clues that could lead us to believe that he would act the way he did. We can't go around suspecting anybody who actually wants to work with children. So what could we do? Probably nothing. Actually, the camp should have had a policy of never having a child alone with one adult. There should always be two adults per single child. Then again, what if the other one... As you can see, I'm having trouble finding a solution. So are most people, I'm sure.

ADHD Summer Camp part 1

Sun, 3 Dec 2006 13:05:15+0000

To our great surprise, a few years ago Sandra found out about this summer camp that specializes in letting your hyperactive kid spend some quality time away from home. From 5 to 9 days, to be precise. So Sandra did some research and discovered that the camp is part of a big, traditional, summer camp organization. A psychologist organizes the special camp and works with counsellors that are studying in psychology. The psychologist is fairly well renowned in Quebec city and actually works as a specialist in court cases that deal with kids.

So we decided to give it a try. It's not cheap. About 700$ (Canadian) for a week. And it's not close. A three and a half hour drive from where we live. Still, if A. could have a good time while giving us a bit of a rest, it would be worth it.

It WAS worth it. Although it was hard leaving A. "alone" for the first time, Sandra and I did get to spend some quality time together, which doesn't happen very often. Of course, the week went by very quickly. A. was happy to see us after such a long time apart. He'd had a great time and wanted to go back next year. We also had a quick meeting with the psychologist who told us how A.'s week went, his highs and lows, etc. He had a lot of nice things to say about A., explaining that he believed he was a positive leader and that he had a good influence on his group. We were thrilled by the comments and were pleased with the entire organization.

We decided to send A. back to camp the following year, and the year after that. You'll absolutely want to read what happened then. The next entry should be posted in a few short of days.

How we somehow lost our neurologist

Sun, 26 Nov 2006 17:22:55+0000

Strange, here we were, thinking we had at least one person that seemed to understand A.'s condition. And now he's gone. All within a 30 minute session.

Let me elaborate a bit. We were meeting A.'s neurologist, as we do every six months, when the first thing he said was that he was leaving town for a year to go study somewhere in the United States. O...K... He then tells us about some medication he feels A. should take that would probably work well with his Concerta. Some kind of alpha blocker, I believe. I'll post more about it when I find the documentation he gave us. I already know Sandra won't want to give A. any new drug and I can understand why, but I ask some questions anyway so we can have as much information as possible. I learn that one of the recommenced drugs isn't really available in Canada, but can be ordered if a doctor signs the demand, which will probably be hard to do because of the current negotiations with the government.

And then it's over. Thank you and good-bye. No "here's another doctor you can see while I'm gone", no "my secretary will call you when I get back", nothing. We leave and, once again, start wondering what our next step should be. A few days later, we're still not sure.

News: Living with ADHD

Wed, 13 Sep 2006 20:12:41+0000

I found this story in the "Press-Entreprise" (who, I think, republished it from WebMD). If you know a bit about ADHD, you won't find anything new in there. What I liked about it was that it seems well balanced and objective. It's an interesting introduction when you're trying to learn a bit more about your child's situation. Here's the link:

Press-Entreprise's article

For the record, Sandra does a lot of the cooking around here and I can safely say that A.'s diet is well balanced, he eats very healthy food. As for Omega 3's I'd be curious to read about your experiences with it, if you have any.

Douglas Hospital, part 2

Sun, 3 Sep 2006 11:58:10+0000

The second appointment wasn't too far off from the first one, thankfully. Off we went, A. and I, to Douglas to meet the nice lady we had met a couple of weeks before.

I was in a dark room behind a two way mirror, sitting next to the video camera that was taping the whole thing. The test lasted about 30 minutes during which the doctor asked A. some questions, had him invent some stories, play with toys, borrow toys, etc.

As with many psychological tests, I believe, this one is also based on statistics. "Normal" children usually respond in a certain way and children with Asperger's Syndrome have a different type of reaction. Depending on how different the results vary from the established norm determines the diagnostic.

It took a long while before we got the results back. Actually, I had to call the hospital to know what was going on after having waited about three months. After a few days, we got another appointment with the two doctors we had originally met.

They apologized profusely for making us wait so long before getting the test results. They have determined that A. (also) suffers from Asperger's. Sigh...

So here we go again. Another diagnostic and another weight on poor A.'s shoulders (though he doesn't know it yet). After I asked, they told me that A. was about in the middle as far as levels of Asperger go.

We were told that the government helps (financially) parents with children that have such a condition (this might also apply to Tourette's, I'm not sure).

And that was it. Thank you and good-bye. The kind doctors sent us on our merry little way, telling us that some help might be had at our local CLSC. And once again, Sandra and I were left alone with this (new) situation.

Sandra mentioned, after this meeting, that she was very proud of her son. He suffers from ADHD, Tourette's Syndrome and Asperger's Syndrome and still, he manages to go to a regular school and have (usually) pretty decent test scores. Quite an achievement, I agree.

Still... Where do we go from here?

Douglas Hospital, part 1

Sat, 19 Aug 2006 15:35:45+0000

After re-reading my last post, I'm worried that some people might believe Sandra and I are on a quest to have A. diagnosed with every ailment known to man. Please understand that this is not the case. Maybe I can better explain using the following analogy:

A. is a bit (psychologically speaking) like a slippery eel. We try to help him as best as we can, but we have trouble understanding him. As if we couldn't reach him at all. We both know for a fact (through various experiences and conversations) that he actually understands much more than he lets on, but that doesn't make our life much easier at home (or at school, for that matter).

For us, learning as much as we can about A. helps us better understand him and also helps us make him grow a bit more. So when Sandra came upon some info about Asperger's Syndrome (follow this link to learn more about Tourette by reading Wikipedia's entry on the subject), we found that A. got a 95% score on the test to help spot an Asperger child.

So this is why we ended up at the Douglas Hospital where we met a two people who talked with us and asked A. a few questions. They concluded that A. might suffer from Asperger's, but that a more formal tests would have to be taken. This test would be videotaped in order to have at least two people review it. It's a bit of a subjective test, I believe, about a child's social interactions, so the more people who rate the test, the better. So... We gave our consent and took another appointment.

News: Dance Therapy

Sat, 12 Aug 2006 13:30:05+0000

The title of the article I read is A positive spin on children's health" and I almost overlooked it because it sounded soooo...well... boring. I'm glad I took a chance.

Basically, a study from Sweden shows that dance therapy could be a good method of treating hyperactive boys. I believe it's the combination of creativity and activity that helps them. This is pretty cool. We hear so much about "alternative approaches" that involve ingesting something that it's a refreshing change to read about an approach that helps by making them move and create. I hope we'll learn more about this soon.

Our first visit to the new neurologist

Sat, 5 Aug 2006 15:15:18+0000

You might remember that during one of our visits with the child psychologist, we asked her about the possibility of A. also suffering from Gilles de la Tourrette Syndrome (follow this link to learn more about Tourette by reading Wikipedia's entry on the subject). She mentioned that she didn't feel she could answer that question and referred us to a neurologist.

We called, scheduled an appointment and patiently waited for a few months. We finally met with Dr. Rubin around October 2005. He seems like a very nice and patient man (A. instantly found him funny, which is probably a good thing). He asked us a few questions, talked with A. a bit and had him take a few tests.

Simply put, his conclusion was that A. is a very intelligent young man and that he does suffer from Tourette.

We were saddened (though not shocked) to learn that A. does indeed suffer from Tourette. This is but another weight on his shoulders and another aspect of his life that he will one day have to learn to deal with. On the other hand, we feel that knowing more is better than knowing less and that such conclusions might actually help us take some steps in the right direction with him. (Sandra was also very happy to hear the doctor call A. "very intelligent")

So what now? Well, we asked the doctor if he thought A. might also suffer from Asperger. We had recently learned of this condition (somewhat like a sub category of autism) and our readings led us to believe A. might also be afflicted. Dr. Rubin didn't feel he could give a diagnostic and referred us to another doctor, at Montreal's Douglas hospital.

Here we go again...