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News for kids with mental health challenges

Everett_on_bike
As if to punctuate the news I
was listening to on NPR on the morning of February 10, rapt and horrified, as soon as the piece on the draft of the new 'Diagnostic and Statistical Manual of Mental Disorders' released by the American Psychiatric Association today, Monroe rolled over, asked to nurse, and when refused, screamed and punched me in a brief, intense fit of anger. The news, at least in part: mental health medical professionals will be urged to consider an alternative to pediatric bipolar disorder, a label currently on the chart of a whopping 1 million (!!) (!!!!!!!) children in the U.S.: temper dysregulation disorder. I do know that I'm not qualified to make this diagnosis myself, but the child described by the mother in this piece is my seven-year-old; he's also my two-year-old; oh my god OHMYGOD if Everett were to have been diagnosed with bipolar disorder?

I learn after listening to a few more pieces on the subject, if Everett were to have been diagnosed with BPD, he'd still be at Grout; given the oppositional/defiant disorder "diagnosis" handed to us by a parenting coach and shared with the school -- I'd no idea at the time I was possibly creating a Berlin Wall's-worth of barriers for my poor child's future -- he had to be sent to a special school, not mainstreamed with gentle love and school district-provided assistance. So-called "conduct" disorders like oppositional/defiant, once on his chart, allow school districts to remove your child from the mainstream. There may be many drawbacks to temper dysregulation disorder -- I've been reading a wide range of them in the past few days (for instance, it's limited to children between six and 10, perhaps leaving the window open for psychiatrists to consider it a precursor to bipolar disorder and, thus, prescribe the anti-psychotics that are precisely the enormous concern of parents and activists surrounding pediatric bipolar disorder) -- but its availability as a more accurate diagnosis for kids like Everett, being biological and not conduct-based, could open up educational options.

The other big news was that Asperger's Syndrome will be removed from the manual (which isn't published until 2013), with the recommendation that children who meet the current criteria for Asperger's be instead diagnosed with Autism Spectrum Disorder. This, too, could have far-reaching effects mostly centered around public school accomodations and social service eligibility, with perhaps a minor effect on which treatments would be reimbursed by insurance companies.

I'm working on a larger article about this and will be interviewing a few pediatricians and other experts in the next day or so; I'd love to hear your thoughts and perhaps weave them into my interviews. I'd also be interested to see if any of you with children who fit either diagnosis "basket" were heartened, or terrified by the news? Did you see relief or great worry? I have so many rather weighty questions that I don't think the experts can answer (should Everett have been placed on anti-psychotics? Are the anti-depressants he is taking ultimately harmful? Just how badly did I effect his future by allowing that conduct disorder diagnosis? What about the kids who are on anti-psychotics? I million freakin' bipolar kids? How could that be?)

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Anti-psychotics are not just for kids who are bi-polar. My son has AS and he has been on them for almost 2 years now. This past September, I tried to lower this particular med. Honestly, I wanted to make sure that I was making the right choice. Within a week, the school was calling me every single day. My son stabbed someone in the hand with a pencil, he was punching kids in the stomach. I immediately put the dose back to where it was.

Everyone has their own opinion and most are very willing to tell you theirs. BUT - you have to find what works for YOUR family. My son deserves to be the very best he can be - in whatever way that enables that.

I'm not too keen on the idea of clumping AS in with Autism. AS kids need and benefit from very different things than kids with Autism. I'm worried that generalized services will be erected. These kids are so very different from each other.

Here's a great blog written by a psychiatrist who is quite skeptical, especially of the pharmaceutical industry (and his profession's colleagues who are in bed with pharma).

http://carlatpsychiatry.blogspot.com/

You might even want to contact him for your article.

Confusion abounds in my thinking on all this. The very title of the article, referencing "mental health," brings up conflicting thoughts. I think of my son as simply having different wiring, not mental health issues. What he "has" I think is going to be included in the DSM for the first time: Sensory Processing Disorder. He comes close to having Aspergers by some definitions of it, but not others, and doesn't come close to having what "mental health professionals" think of as autism as they will be defining it in the new DSM. I'm guessing many kids who were solidly in the Aspie category before could get scooted into the SPD category, but that won't fully describe their needs. Each kid is so different - neat little categories just don't seem to work.

I would be OK with the Asperger's diagnosis sticking around if there was better education for the folks actually handing out these diagnoses. My daughter has autism but for some reason because she talks and is social people say, "Oh it must be Asperger's then and not autism." So what?! having autism equals bad and Asperger's equals good? I work in developmental disabilities and the families I work with often say I gave them better advice in an hour than any mental health provider ever has. There are good ones out there for sure but a lot of them that I cross paths with are more than happy to blame the parent for everything. Those of us that work with behavior in the DD field are pretty much convinced that oppositional defiance disorder and intermittent explosive disorder are completely made up by docs that have never bothered to learn about the characteristics of things like sensory processing disorder or mild forms of autism. I mean wouldn't you feel like punching someone if you went through the entire day being aware of your clothes on your body and it made it hard to listen in class? Then these kids get slapped with an emotional disturbance label? It is so frustrating. I am tired of talking parents down after these mental health people give them the run around and then charge insurance almost 150 bucks for 15 minutes. I am tired of the DHS workers that accuse parents of abuse because they have a child with very challenging behaviors. I would really like to see parents empowered for a change instead of judged. To add insult to injury, the school district sits you down in the small chair to tell you everything that is wrong about your kid and how there is this island out on 71st and Division where they can be with "their own kind".
Wow, guess this inspired me to express some building frustrations. I just want parents of kids with challenges to know that they are the true expert on their kid all day, every day.

- : sorry to give you conflicting thought with the title. my original title was much more precise and loooong, and made my head hurt to read it, so i altered to something simple.

Stephanie: wow, you have described so much of my existence. I appreciate your expression of building frustration! I was in one of those little chairs two-and-a-half years ago and it was miserable. I've been told so many times -- by medical professionals, by people online, by family (in a "nice way" of course) -- that I was a pretty bad parent, really. we've had DHS and cops come to our house. I'm sure it will happen again as Monroe gets older.

I keep hearing stories of kids on anti-psychotics who are much like Everett and Monroe, and I think for a second, maybe? but they freak me out, seriously. Crystal, is your son in a mainstream environment or somewhere else? do you notice any effects of the meds that concern you?

Sarah my rant on Aspergers was not directed at your article FYI and was just my general frustration at people assuming autism equals low-functioning and setting up some sort of disability hierarchy which only divides the parent community more and more.

I am so sorry to hear that you resemble my remarks and my heart goes out to you. You are a good parent, nobody is born knowing how to do this stuff even with typically developing kids. Add a neurological disorder into the mix and you are even less prepared. When I do my trainings I use the metaphor of the iceberg. We only react to this very small portion of what we see on the surface but what we really need to be aware of is what is happening below the surface (sensory, brain stuff, processing speed, medical issues). Another metaphor I like that I got from Diane Malbin is that it is an "invisible physical disability" - we would not ask someone with no arms to lift something without support so why are we asking our kids to lift with their brains without support? - because we can't see it.
As for meds - I used to be anti-med and still work with parents to try to use the behavior approach first before looking at meds but I have seen some kids really relax and become more successful on meds too. You have to look at whether the benefits outweigh the risks. For example, Risperdal is very popular but weight gain is bad and some boys develop breasts in their teens on it.
A lot of people don't know that if you have a child with a qualifying disability you can call the county anytime and tell them you can't handle it and to put your child in a voluntary placement. DHS will pay a foster provider more money in a month to foster a kid that a parent has asked to be taken into care than they will give for an entire year of respite and training for the family through family support services. Things have changed a little but I still talk to families that called the county/state for help and were told that they had to put them in foster care to get help - now they will sometimes pay for someone like me to come in to the home to help parents but only for limited amounts of time. I could write for days on this - any parents here that need resources and advocacy can email me at stephanie.c.hunter at gmail dot com and I will do my best to give you some advice. I am organizing formal advocacy through the Portland Parent Union.

Sarah - he is in a mainstream first grade classroom at our old neighborhood school. I was really on top of his needs though. We visited his school and class the week before kindergarten started and it was that early that I requested an AS assessment to get the IEP started. His OT, speech and writing center "helpers" have really been an integral part of his success over the last year and a half.
I assume you mean negative effects? I will be very honest - the first week or two I questioned whether or not this was right. He looked drugged. He was very tired. He didn't talk much. BUT ... I tried to give it a month. His prescribing doctor encouraged me to. In my early adult years, I was on a few different anti-depressants. They sucked at first. All of them. Then ... gradually my body adjusted and worked out the kinks. This happened for my him too. I'd say by the 4-6 week mark he was back to normal, except it wasn't normal. It was better than normal. He was happy. I was happy. Our family was happy. We weren't just coping or managing - we were living and enjoying life.

AGAIN - you have to find what works for you and yours. That isn't to say that you might question yourself later, like I did. Or you may even change completely along the way. I think this is just as much a learning process for the parents too.

here are two interesting articles i found - one that addresses parent blaming (and professional denial of the existence of mood disorders in kids) and the other is about the stigma of mental health and its uniquely american aspects:

http://www.bipolarchild.com/Newsletters/0710.html

http://www.nytimes.com/2010/01/10/magazine/10psyche-t.html

here also is a great article on parenting an "atypical child"

http://radicalunschooling.blogspot.com/2009/10/unerzogen-article.html

Thanks for those articles, LW. I'm a mental health therapist and found the first one particularly interesting. The whole diagnosis issue is so complex and can definitely serve to help and hinder and remains such a subjective process. How I wish we could run a few labs and get an answer. I'm actually looking forward to the potential the Temper Disregulation diagnosis has and will be curious to see how it actually plays out. I'm less enthused about the large Autism Spectrum change, but I'm just starting the education process on these changes so that's more of a gut reaction than a scientific one. As far as insurance billing goes, there is a very real fact out there that "medical necessity" drives payment and if you want mental health services covered by insurance as opposed to paying out of pocket, be sure to discuss this with your provider. An ethical provider will not manufacture a diagnosis where it is not appropriate, but this may also mean they are unable to treat you or your child using your insurance benefits.

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