Sunday, July 05, 2009

A Little Understanding: Preparing the War Paint

Friday was quite eventful here. We got to meet Team Stimey, which was exciting and wonderful; but we also met with a psychiatrist about Andy, on advice from our family doctor, who found his constant motion to be- well, not normal. It was an odd interview, with ups, downs, and both positives and negatives from many angles.

For one, I am a little suspicious of a pediatric psychiatrist with an office that is not designed and prepared for children. There were two overstuffed and cushioned couches, the kind my guys like to bounce upon, and I suspect so would many other children, especially ones with attention and hyperactivity issues (and this psychiatrist is supposed to be a specialist in ADHD). The doctor insisted we have an interview in this room, because it the room always used to interview the family; but being alone, I had to keep the guys with me. I can't imagine I am the only person to walk in on my own with my kids, so I was surprised to find in the room a single plastic table and chair- no toys, no crayons or coloring books, nothing for a child to actually do. Should I assume most five-year-olds can sit quietly on a couch while mom answers a lot of uninteresting questions? That is completely alien to me; I have no idea.

Consequently, my children promptly trashed the two couches. They put on their best display of the Witching Hour I could have possibly wished for. With nothing else to do, they turned their attentions to pillows and each other, and the plastic chair. Andy worked steadily to make himself a nest. Joey worked hard to use the same pillows for his own purpose.

The doctor asked Andy to sit on the couch for ten minutes, indicating the clock itself as a visual. I think if there had been a time timer available, we would have had better luck, but the fact that he couldn't even sit for two minutes was pretty impressive for the doctor.

And then I got a taste of how biomed parents must feel when sitting in a doctor's office explaining their experience. The doctor turned attention to Joey, and pronounced him an Asperger's child. When I explained his diagnosis was classic autism, not Asperger's Syndrome, we got into a bit of a heated debate on the matter, because Joey is so obviously social. This, according to this psychiatrist, precludes a classic autism diagnosis, because autistic people "don't like to socialize." I noted that this was not my experience; the autistic children I had met were very much interested in social interaction, but had communication and sensory issues which prevented them from doing so in a fashion that was expected. When Yale and Princeton ere shoved in my face, I tried to graciously back off the subject by noting that yes, my evidence was certainly anecdotal, and I would indeed be interested in the studies the doctor had participated in, though it would be difficult for me to draw a conclusion without actually meeting the subjects; and after all, we weren't here about Joey. We were here about Andy.

I find it concerning that people in an institution such as Yale would make that most greivous and discriminatory assumption, that a person who is not responding to you doesn't want to respond to you, rather than that they may be unable to respond to you. It is hand-in-hand with the idea that a non-verbal person has nothing to say. Prove to me that this person doesn't want to be social. Take out the sensory issues, the communication issues, and the frustration from being repelled themselves, and show this to me. Because honestly, it is not what I have seen. The autistic kids I have encountered, when given appropriate opportunity, have all shown interest in social contact... though often not in ways society might expect. Society doesn't expect a child to play with a stranger's hair, or say things at apparent random, or hit them. Yet these can all be attempts at contact, at social connection.

Meanwhile, back to the children destroying the office. Joey was removed from the equation briefly, but apparently the improvement was not considered significant. With Joey's return, the situation exploded. Andy even bit Joey, upturned the plastic table, and kicked at me. I haven't seen him that bad in a long time. Yes, we were in rare form; but certainly this is critical moment when we need advice and help! The doctor did not beat about the bush, they wanted to know what steps I had taken to get him help. I explained that I had been through Child Find twice already, and been told he was fine; I had moved him to his school to give him more movement and opportunities for heavy work and sensory self-regulation. Also, I had presented a letter from my private OT with accommodation recommendations, only to be brushed aside. The doctor was, to be gentle and reserved in my words, appalled. Why had I not been given an IEP? (and I did not appreciate being upbraided about it, especially after I had just said I had been through Child Find not once, but twice.) I think the doctor was just as appalled that no one in the Child Find had picked up on the problem.

Because according to the doctor, Andy has a very severe case of ADHD. Severe enough that the doctor wrote a letter to present to the school to that effect, and STRONGLY (with double underscore and large letters) recommending Andy have an IEP- and didn't charge me the usual $35 for it.

There were bright and encouraging points in this conversation. First, the doctor wants to avoid medication if at all possible. They even impressed upon me more than once that the school had no right to tell me to medicate my child, they had to provide appropriate accommodations with they assumption that he would not be medicated. I got the feeling this was a common problem, and I was actually glad to have this emphasized. The doctor wants to do nothing at all until October, so that the school is forced to deal with Andy as-is and discover his needs and challenges.

I have no intention of waiting two months for Andy to get appropriate educational accommodations. I intend to take the letter to the school Monday morning and make a formal request for another evaluation. Maybe someone will get the idea that I am not nuts (as I am sure they consider me right now). Well, maybe "nuts" is too unprofessional; "pushy"? "demanding"? "crazy as a loon"?

Am I concerned that we had a diagnosis of ADHD because we went to an ADHD specialist? A little, considering some of the other issues we encountered at the office. So JoeyAndyDad and I have done what we always do when presented with something we feel we are completely ignorant of: we have started to do the research. I'll keep you posted as to what we find when we get an idea of where to look things up (ie, when we've gotten a good bit beyond our Google PhDs and into real materials). I also will be taking a copy of my letter to our family doctor, and see what information I can get there. I may even contact Kluge. But again, I am left with a lot of questions, not the least of which is, what is the connection between ADHD and sensory processing disorder, and the autism spectrum?

But I have a lot of hard questions to be asking the school first, and I want answers, now.


Niksmom said...

Goodthing you feel like you got something positive from this doc; I was getting madde & madder as I read!

Any useful stuff over at Maybe email Carrie directly to ask her to point you to some good links/research re SPD/ADHD connection?

Keep us posted. Hugs.

Club 166 said...

OK, so I'm not getting warm fuzzies for a good long term relationship with this doctor. On the other hand, you're not marrying him, just seeing him for an opinion, and he may be the best you can find in your area.

If you can afford it, get a second opinion. Pick the closest university and call them up. See if they have a grad close to you, or travel to the university. Universities aren't necessarily the end all and be all, but they aren't usually too far off the reservation.


farmwifetwo said...

Don't sweat the diagnosis. USE IT. Make the school put in the accommodations required b/c you hold that piece of paper in your hand that say "You must do". Make certain you keep a copy, make certain you write down what happens at each meeting. Take a tape recorder, transcribe what they say and send it to them. Take a support person with you preferrably someone from the disability field/autism society/ADHD people that knows the system. NEVER go alone.

My eldest son is probably full NLD by now, or even less b/c in a lot of ways he's pretty much normal, grades are good, with some mild social issues. No longer "a mild form of autism spectrum disorder". When he was psychometrically tested last Sept they offered to redo his Dx. I said "No". Why?? B/c his IEP reads Mild PDD... so what if they wrote it wrong.

What it gets me is the OT. Without AUTISM in the dx there would be no OT. NLD, speech and language delayed with global delays... all not good enough.

I told the psychometrist we'd discuss it at Gr 8 b/c finally in Gr 4 (this past year) we have an EA (quarter time Educational assistant)... took since Kindergarten b/c he could "cope" BARELY.

USE it.... to quote the OT supervisor "a dx is only to get services". If it gets you the services you need for your son... who cares.

Joeymom said...

Those are all excellent reminders, Farmwifetwo! Tomorrow will be the formal request for the meeting. I'm not thrilled with having to go through this again, but $@#$@&!! this should have been picked up two years ago when I had him evaluated the first time! And certainly by the second time we went through Child Find. What is the point of Child Find if you aren't going to find the kids who need service???

And darn tootin' this is for service. Andy is a very energetic child. Fine. But now we have a professional saying this will get in his way at school. Not fine. I want an IEP. Enough of the putting-me-off crap.

Our school OT is not worth the time to spit out her name. We keep Joey's OT time in his IEP in hopes that she is going to retire soon and the school hires someone actually useful.

I'm going to hit up our private OT about this new development, since she works very well with the school people in our IEPs for Joey, and always has good suggestions. In fact, she's already sent them a list of recommendations for Andy, and that's the stuff we think he needs, so they already know what we're looking for, and none of it costs the school a thin dime (which kind of makes me more upset that we're having all this trouble).

I have my Andy Notebook in order. I have batteries in the tape recorder. I have the diagnosis and the letter of recommendation in hand. We are now ready to rumble.

Aimee said...

I was diagnosed with ADHD at age 8 (I'm 22 and in college now), and with "many traits of Asperger's" when I was 19. I think there are more connections between ADHD, SPD, and the autism spectrum than most professionals have ever acknowledged. There's an excellent book I found that I think you should check out. It's called "The ADHD-Autism Connection: A Step Toward More Accurate Diagnoses and Effective Treatments" by Diane Kennedy, Rebecca Banks, and Temple Grandin. ISBN: 978-1578564989 It really helped me understand a lot of things, and I think it would help you with Andy.

Maddy said...

It is always [for me] disconcerting to consult the 'experts' and find yourself explaining the basics / 101 guide to autism. Generally, as soon as I hear the idiot question e.g. autistic people aren't social = that's pass and parcel in autism, I resist the temptation to hit them over the head with something near to hand and treat them as the virgins that they truly are.

I'm with farmwife two = use it, exploit what you can for the best outcome.

Not social = doesn't it make you want to spit?
Best wishes as always

mumkeepingsane said...

Well, you got something out of that doctor anyway. I really felt for you reading your description of the time in that office. Before Patrick's autism diagnosis we had a neurologist(seeing her for seizures) suggest he was ADHD. Actually, what she said was "you don't think that's normal, do you?". It was a love/hate relationship for sure.

I agree with farmwife. Now that you have that letter...go get 'em. Get that IEP and don't take no for an answer!

As a side note, since autism/aspergers was mentioned, Patrick's diagnosis is Autism but anyone who sees him now is positive he has Aspergers...I'm thinking because his speech is in the low-normal range now. I dunno, the spectrum is the spectrum and, for us as for many familes, it's all about the services.

little.birdy said...

1. Andy is in such capable hands. Seriously. You are an awesome mommy. :)
2. I did a quick PsycARTICLES search for SPD and ADHD/ADD connections and didn't turn up anything. Boo. I'll see what else I can ferret out. One thing that helps me keep autism, Asperger's, ADD, etc. in perspective is the DSM-IV diagnostic criteria for them.
3. At least the doctor didn't want to put him on medication right away. I think too many doctors think drugs are the be all and end all answer to everything these days.
4. Oh, OF COURSE all children with autism are anti-social and hate people, didn't you know? *rolls eyes*

Stimey said...

I'm glad that you're starting to get some good answers. Go tell that school what's what!