NY Times article from 12/22

OK, so the NY Times ran a truly loathsome article on meds (here's the link, but after seven days you have to pay, I think, unless you're a subscriber... http://www.nytimes.com/2006/12/22/health/22KIDS.html?_r=1&oref=slogin) . I was really angry about this--blood boiling, red in the face, angry. I knew immediately upon reading it that I wanted to respond, but took a couple days to calm down before sending my email.

Now, I have to say that while I don't regularly write letter to the editor or that sort of thing, this is the second time I have written to a NY Times writer.

The first time was when they wrote an article on "sugar" in soft drinks being linked to obesity. Of course, soft drinks don't have any sugar...they are made with high fructose corn syrup. I pointed this out to the author, but my email didn't get a response. I don't expect that this one will, either.

That said, I'm going to stop reading the NY Times. They clearly don't do any fact checking.

So, this is the letter I wrote to the author of the article, Benedict Carey:


Dear Benedict:

If you have received a lot of vitriolic responses to your article on ADHD already, please accept my apologies for piling on.

Firstly, I'm curious why you chose to label ADD/ADHD as a "Mental Disorder", when it is broadly considered to be a disorder with a neurological basis.

Quite honestly, as the wife of a man with ADHD and the mother of a child with the disorder, I found your article to be incredibly biased, and something the sanctimoniously judging masses can cite as "proof" that our parenting is inadequate and lax...that we are lazy, and our children would be fine if only we would put forth a bit more effort.

The family that is the basis of this entire article has a somewhat unusual situation. If symptoms present primarily at home, I would personally find the diagnosis of ADHD to be is suspicious. A child who has atypical neurological functioning that truly is ADHD, as opposed to a child who simply has behaviors consistent with ADHD, will have problems in every setting. Home is likely to be where the problems are the least troublesome for such a child, as the expectations are less stringent at home than at school (for example), and there is less external stimilu.

Additionally, medicating your child with stimulant meds is hardly easy or desirable for the families involved. We all hate it. We fight with insurance companies, doctors offices and pharmacies constantly. The schools are against us in a lot of cases. Our children have trouble at camp, on playdates, at the playground, on the subway.

Really, it would have been nice if you had presented the other side of the coin in your article rather than just indicating that we aren't doing enough work from a behavioral standpoint.

The meds aren't perfect, but I believe and hope that in the near future, the research being done on Autism will provide relief for the children with other neurological disorders such as ADHD and Tourrette's syndrome as well.

Sincerely,

Moi

So, that was my little rant. Angry, angry, angry mamma.

On a lighter note, Squirrel is having a great time in VT with my parents. They aren't giving him meds while he is there, and he is eating everything in sight, which is a good thing. He's such a skinny bean.

When he gets back, he is taking the OLSAT for (maybe) getting into a gifted and talented program. Frankly, I'm considering bagging the whole mainstream ideas and getting him into a special needs private school. I'm tired of teachers and administrators who don't understand what is happening, and feel like the peace of mind I would get and the self-esteem boost he would get from not being "weird" would be such a bonus that it would make up for the loss of his second language.

Not that he would "lose" it...we would support it. But, it isn't quite the same.

Happy new year, all.

Disorder vs Personality--my rambling exploration

I'm reading a biography of the Marquis de Sade (At Home with the Marquis de Sade, by Francine Du Plessix Gray--very nicely written book). He is described as child who was impulsive to the extent that he would become violent if he didn't get his way.

Now, this may sound sort of convuluted and confused, but that is certainly reflective of my state of mind in general...

I'm not suggesting that the Marquis de Sade had ADHD--it would seem unlikely that he would have been able to write the way he did if that were the case--but I do think that his behaviors, were he alive today, would be flagged as atypical in some sense. There would be intervention, behavioral modification, possibly meds.

How many of the artists and thinkers from the past would have fluorished in today's schools? Would their creative minds have been simply forced into a mold? Were they all neurotypical?

How on earth am I supposed to know if I am making the right choice? If a child is different, perhaps that very difference that causes such strife is precisely what will propel the child to become an incredibly different and exciting adult.

The work...the interventions I am doing...they make it easier for him to cope with the status quo in 2006. But, is conformity a goal? Would the rigid environs of contemporary life stifle the minds of the great thinkers of the past?

If I were slightly more nuts than I already am, I would label my son an indigo child, homeschool him and let his unique neurological makeup dictate the learning style.

But, my life is more conventional than that. I go to work, my husband goes to work, and Squirrel has to go to a regular school where he has to sit at a desk and learn things. My hope is that all our work isn't soul-crushing to our son...that it allows his creative fertile mind to blossom. Our intention is to support him, not to turn him into a mindless automaton who has been conditioned to suppress his instincts and obediently follow instructions.

Squirrel has actually asked me if I would home school him (he doesn't know the term home school, but he described it). I'm afraid that, even it were an option financially for me to do this, I'm really not disciplined enough to teach.

This is just another day where I spend some time wondering if I am making the right choices...I wonder if I will be 60, having a conversation with my adult son where I justify the choices we made by saying, "Well, we didn't know so much about ADHD back then, but we were making the best choice based on the information we had."

At any rate...Squirrel will be spending his winter break with my parents, who are wonderful with him. I am in awe of their stability, their thoughtfulness, their patience...

I've been quite snappy and irrationally angry lately. While Squirrel is out of town, I'm going to talk with my Dr. about this and maybe get some meds for myself. Children's ADHD meds should come with a companion prescription for the moms...I was never depressed or whatever before, but dealing with the insurance company alone has been enough to push me over the brink.

Happy holidays! Enjoy school vacation...no homework, no bad reports for two whole blissful weeks.

Coping skills/Cathartic Release

This only peripherally has anything to do with ADHD, but it's what I am thinking about today. Plus, sometimes I like to have myself a good cry, and this subject always gets me there.

Last night I was thinking about how I am trying to give my son the skills he needs to be successful in this world. For him, that's not just the standard reading/writing/computer skills...he has to learn how to calm himself down, how to filter out extraneous stuff from his environment and focus, how to get through a day without completely driving everyone batty.

This caused my mind to wander to a woman I knew when I was about 5...my mother's friend Debby Sessions. At the time, we knew nothing about her mental state. She was brilliant and creative. I was in awe of her beautiful hair, and loved that she would do things like throw a themed party--with Mexican food (very exotic in the 70's, at least where I lived) and a handmade pinata. Time with Debby was sure to be exciting.

Years later, after we had moved, Debbie told my mom that she had Multiple Personality Disorder. Despite that incredible burden on her, she was an inspiring frined, had a successful marriage, and was a mother to three fantastic boys (all rather alarmingly brilliant).

She wrote a book for children whose parents have MPD called "My Mom is Different". You can view it as a .pdf at the sidran.org website (I've tried to insert a link, but am not confident in my abilities to do so).


I suppose this book inspires confidence in me--my son's problems aren't nearly as severe as hers were. He has a loving supportive family. I spend time worrying, of course, that he won't learn to cope and that he will be lonely in life...that he won't be able to have a satisfying career.

At any rate...reading through her book always gives me a good excuse to cry (my other favorites excuses are The Velveteen Rabbit--Squirrel always hauls that one off the shelf because he thinks it is HILARIOUS when I cry over a book--or chopping a pile of onions).

Squirrely is having a pretty good week at school. They are kind of winding down the academics in anticipation of holiday break, though, so it may just be that the expectations are milder.

Understanding

As a completely 100% neurotypical person, I'm always curious about what it is like to be inside an atypical brain. In general, my impression has been that it is extremely frustrating. Squirrel seems to know what "normal" is, and would like to be that way, but can't do it.

This morning while walking to school, he said to me, "I hate all these things inside my head."

I took his hand and asked, "What sort of things?"

"That's why I get riled up and all crazy. Because I have too many things inside my head."

"Can you explain? You know my brain doesn't work like yours."

"Well," he said, "Like, if I'm supposed to add 15 and 4, and I can't do it because I'm excited about going to a birthday party. I'm thinking about the birthday party, and I try to make myself think about math, and then by the time I can think about math, the class is over and I don't have my work done."

Now, this makes sense to me. Squirrel has finally been able to explain ADHD to me in a way that I can understand. We all have times we can't concentrate. When it is the day before vacation, and I'm sitting at work trying to figure out if I have packed everything, if I have passports and someone to take care of the pets...days like that ...well, I suppose every day of Squirrel's life is like that.

Minor thoughts occupy his brain, and he can't get things done.

I was really glad he said this to me.

His dad gave him some excellent advice on forming friendships. I'm sure I have mentioned that my little guy is having a rough time--no kids want to play with him at recess, he never gets invited to anyone's house. The other night, his dad explained to Squirrel that he is a great kid, it is just that because he is different, other kids can't understand him, and it takes them a long time to get to know him.

I agree. I think that by the time Squirrel is 12 or 13, he will actually be pretty popular. This is a tough age.

On the lighter side, Squirrel has been insisting on writing his name as, "Squinorrel" in class. When his teacher asked him why, he said that this is now his name because everyone always tells him no!

When I read the comment, I started laughing, so I had to explain to Squirrel what I found so funny. I told him that he's very creative. I agreed that he does hear the word "No" an awful lot, so I can understand why he started doing that.

I'm not sure if the teacher thought this was funny, or if she sent the comment home so I could encourage him to stop.

Frankly, I love it. If he wants to write his name as Squinorrel the rest of his life, I'm completely supportive of the idea.

Meeting with the folks from Special Ed

This meeting was with 6 people...I thought it would be two, and be pretty low-key. I don't know why I thought that...I know that these meetings have major legal and financial ramifications for the Board of Ed. I suppose I should be surprised that they don't have legal counsel attend as well...

At any rate, they don't feel that my child needs Special Ed, really. He performs at grade level, and his school isn't throwing him out right now. So, they gave some recommendations to assist him in the classroom (change of seat, behavior modification ideas).

They said that if I were ready to put him into a CTT class immediately, they would classify him as "Impaired: other", which is, in his case, the correct classification. But, I'm not moving him unless it becomes absolutely necessary.

I told them my plans for the upcoming year (as I believe it is unrealistic for me to believe that Squirrel will be able to stay at the same school), and they think these sound good. My basic plan? I have applied to several Gifted & Talented programs (for non-NYC types, this doesn't mean that he's a prodigy or anything--it simply means that kids have relatively high IQs and parents savvy enough to lobby for them). If none of those work out, I will go back to the CSE and they will help me get him into a CTT class (a mixed general ed/special ed environment).

One of the women on the committee lives in my district, and she basically told me that I have been quite wise to avoid our local publics. It's nice to get positive reinforcement on decisions. We just don't know the right answer...it's hard to make good choices.

At any rate, that was that. I'm typing up a summary of the suggestions tonight so the school can be informed of everything. We shall see what comes to pass.

Adults I know

I haven't posted anything about Squirrel, because I've been running around dealing with the Board of Ed. Tomorrow is my meeting with them where I learn their "determination". My guess is they either recommend that we actually figure out which meds work, or some Occupational Therapy.

There had been some comments about the educational experience of Squirrel's dad. I'll briefly give his history.

Dad moved to Europe when he was 7, which was in...1974. He had spent his childood up until then living on the African coast, playing in the sea and on the beach with his cousins. He surely had ADHD then, but other than getting his ear twisted slightly more often than the other kids, there weren't any issues.

So, he moves to Paris, which feels like a punishment. A large brick building with bars on the windows...further punishment. He was thrown into a classroom where no one spoke his language, and was fluent in French over a couple of months.

He always got good grades, but was constantly being reprimanded for bad behavior.

He has a tendency to exaggerate, but claims to have been thrown out of many schools...at least one of these was some sort of a boarding school, which I suspect was for problem kids. He tells of many screaming matches between his mother and school administrators. As a teen, he wound up in a bit of legal trouble as well, though he's sketchy on the details here as well. One of his front teeth is false, and I've never gotten that story. I would consider all of these things to be ADHD related, and he prefers to shroud himself in mystery than admit the actual stories, which are surely rather silly.

His parents...mostly his father...abused him. Having his own ADHD son now...he has been able to forgive his father for this somewhat. Not that it is all right, but if you just think your kid is misbehaving, and don't have any understanding of how the brain works...it's complex, but understanding what his parents were dealing with has given him some perspective on his experience. I think a lot of kids with ADHD are beaten.

My husband was diagnosed w/ADHD at 34. His employment history had been spotty, to say the least. He doesn't take meds with any regularity, but if he needs to sit through some training, take an exam, or work on a spreadsheet or something, he will take a Ritalin. He learned how to cope over the years, and is accustomed to his hyperactivity (he spends a lot of time on the phone, pacing while he talks).

So, that's him.

Another adult I know w/ADHD is my boss. Now, he seems to me to have very few symptoms as an adult, and he doesn't take meds. He was thrown out of more than one school.

In case you're interested, if you get thrown out of a private school as a teen, the school still hits you up during the annual fund drive.

So, he runs a successful (though small) hedge fund. It is again a career that favors hyperactivity a bit...as long as you have someone like me to handle the humdrum details.

That is my station in life...handmaiden to the attention deficit set.