Sunday, July 13, 2008

My son, the other drama in my life.

It's been a while since I've talked about my son. What a roller coaster this has been! If you've been following along ever since day one, I apologize for the long summary here, but it *does* help explain part of my reaction to where we are now.

His last day of school in the regular General Ed program was April 5, 2008. He was identified as a Special Ed student in October of 2006, originally under the designation: ED (Emotionally Disturbed). In February of 2007 we went to UCSF for a pediatric psychiatric diagnosis, as many of his school diagnostic tests were pointing to Asperger's.

In 2004 thru early 2006 he had also been in private therapy, where he had been diagnosed with ODD (Oppositional Defiant Disorder), IE (Intermittent Explosivity), and where we had discussed and ruled out ADHD, OCD (Obsessive Compulsive Disorder) and Early-Onset Bi-polar Disorder. (That last one was a bit bogus in terms of a true diagnostic test though -- that psychiatrist spent about twenty minutes with me and no more than ten with him before ruling out Bi-Polar. Whatever.)

UCSF came back with the diagnosis of Anxiety and IE, ruling out Asperger's although they said that he displayed many of the characteristics of the disorder.

The entire time he was in Special Ed at the basic elementary was one horror show after another. The Director of Special Ed, whose brother has Asperger's and who herself has some sort of auditory processing hypersensitivity, saw a lot of autistic traits in Saul. His need for deep pressure. His heightened fight or flight response when faced with a new environment, etc. By April of 2007 I had trotted the UCSF report over to my health insurance HMO to get a prescription for my son for anti-anxiety medication, as recommended in the report.

Well, Kaiser lives in its own bizarre universe, and they didn't see him as being anxious or needing anti-anxiety medication. Instead, he was put on trials of Ritalin and Adderal to control his explosivity. (I had heard the psychiatrist in another venue say that actually no young child really had depression or anxiety -- it was all undiagnosed ADD. This explains his interest in trying the Ritalin before Zoloft. Sigh.) Surprise, surprise, neither of the "impulse control" drugs worked. And he then diagnosed Saul with Asperger's and anxiety, since he could now rule out ADHD (Which every teacher Saul has ever had since 2003 has also ruled out. Sigh.)

With the Kaiser diagnosis of Asperger's on a piece of paper, the Director of Special Ed started to try to train the staff at my son's school how to work with an autistic child. Nope. It wasn't happening. No way, no how.

I had many meetings and IEPs wherein I discussed behavior management techniques (Chunk his day into discrete time blocks. Ask him to set his own goals at the beginning and end of every chunk. Ask him to self-assess his own behavior. Ignore the negative, reduce the shame, and accentuate the positive.) Nope. No way. Favorite quote of the year, by far: "I have seven teaching certificates, but even I am not trained or prepared to do such a thing." Huh? What's rocket science here?

By December of 2007, we started receiving mental health services through the county. Every professional working with him through that office started to say, "We can't tell what is going on until he gets into a different educational program. He's getting worse and worse, and they are contributing to the problem."

I used to get calls from the school every day, sometimes two or three times a day. "He's not doing his work. He's refusing to go to lunch. He's climbing the fence on the playground. We don't know where he is, but he's left campus. He' s not doing his work. Can you come down right away and get him back in class?" Over and over again.

If I got to 10:30 in the morning without a call it was a good day. On those days I could expect a call by 1:30. It was insane. If I did go down, there was often a group of adults hovering over him, shaming him, making everything worse. So even if I left him there, I was running the last thing I saw over and over in my head. I should have said this. I should call another meeting. Dammit, I can't eat lunch now, I don't have time.

During the early Spring, Dear Butcher and I had to assess various programs available to us. And some were quite scary. All had smaller classes and less rigorous academics than he's used to. But the violence of the students he'd be sitting with was scary. One program was dedicated to victims of sexual abuse. Yikes. He's got enough troubles as it is. The schools have padded rooms, for goodness sake. Why can't the local school just put in place some of the things that are scientifically proven to work? Why designate him as Emotionally Disturbed if you are not going to help him through that?

Saul had his last day of school on April 5. Then he was home for a full month until all the paperwork could get signed, so he started school at his new program, Cornerstone, on May 5. During the month of April, he got so out of control, he had to be restrained outside his therapist's office by four adults, face down (on a pad) in the parking lot for almost an hour. We were seconds away from calling in the psychiatric crisis team, when Saul became distracted enough by his father's arrival on scene to snap out of it. It was not a good month.

Cornerstone is a joint program between County Mental Health and the neighboring public school system. (It's designated as a psychiatric day treatment program for emotionally disturbed and abused children.) There's a psychologist on site at all times, and since it's co-run by County Mental Health, his psychologist at school would now be working closely with his present psychiatrist, who could even observe him in a classroom setting if needed. However, since Saul would be receiving educational services through a different public school system, we had to have *another* IEP including personnel from that school district. Basically, it's as if my public school system decided to send him to a private school -- they'll end up paying "tuition" to the other public school system in the form of a transferred enrollment. The County chips in too. OK, fine. Where's the paperwork?

At this meeting we had: Me, the Director of Special Services for my school district (and now my son's case manager), the Principal of Cornerstone, the chief Psychologist at Cornerstone, the lassroom Teacher, and a Supervisor within the Special Services Department in the neighboring school district. It was her signature we needed to get him enrolled. Another three hour meeting. Gah.

Intriguingly, the Special Ed Supervisor from the other district hit on my son's Asperger's diagnosis almost immediately. "I'm concerned about this, because we have had very little success with autistic children in this particular program. Now, we do have another program in our district for elementary-aged autistic children. I'm worried that this is the wrong placement for him." So I went through his various diagnostic tests, and his visit to UCSF, where they ruled OUT Asperger's, while two months later Kaiser ruled it IN.

The Principal said, "You know. What occurs to me in listening to you speak is that this child has never really had *any* sort of intervention. Has he?"

"Well, we've been through a lot, but, um, no. I guess he really hasn't had an intervention yet. That's part of the insanity here. He's had five aides this year and I think he had four last year. As soon as we get a recommendation, we try to act upon it, and then something blocks it. He's had all his blood tests to determine base values before starting him on Seroquel, but even the psychiatrist won't medicate until he has a better idea of what is *normal* behavior for Saul."

"OK then," replied the principal. "I agree with you Carol, that we have not had positive results with autistic children here. However, maybe we can use this placement to either rule in or rule out autism. Our psychologist seems to feel that he can be of use to Saul, and I trust his judgment. I think we should place him here."

And so they did.

He started May 5. He's in a class with nine other kids. There are four adults in the room --it can get a bit crowded-- the teacher, a mental health "technician" and two adult aides. Every day, their first writing assignment is to fill in a worksheet on "How am I Doing Today?" I feel sleepy, hungry, happy, sad, etc., and today my goal is to______. Then they get points. Every day they either move up levels or down levels, depending on their behavior. With every change in level, they get new privileges (The right to use colored pencils rather than crayons. The right to bring one object from home. The right to a McDonald's lunch with a staff member.) Everything is very consistent and very clear. It's basically everything I had been asking his current school to do for him, but at a more intense level.

He's had perfect day after perfect day. He's risen straight up through the levels, earing more and more rewards. He participates in therapy. He's (watch me fall on the floor) Played Softball this summer (with other disabled kids -- two innings, no scores, hugely modified rules, but still. A team sport??). The school doesn't call me. Ever.

He's gone AWOL twice and dropped a level as a consequence. Yes, he gets angry. Yes, he's disappointed in himself and angry at staff for following the rules. But then he's able to say, "I think I can start earning back my level again tomorrow."

You have no idea of the shock on my face when I hear him say stuff like this. I have to shake it off, squeal, and give him a hug rather than just staring at him slackjawed.

Things are not perfect. I've called the police when he walked out of the house. I've had to restrain him. He flipped out at a family party on Memorial Day and I ended up on top of him holding him in four point restraint on their front yard. And then he bit me.

However, we are miles away from where we've been.

We are moving away from restraining him at all. He can control the behavior at school and he's aware that he's controlling it there. Therefore, he should be able to control it at home. With lots of support. And on a much more extended timeline. But *HE'S* got hope that he can control it.

SO. Where are we, really, in terms of figuring out what makes this kid tick?

Well, if all of the rages, self-mutilation, obsessive thoughts, violence, and rigid thought patterns seem to have disappeared from the school setting, then it's probably not Asperger's. (Although everyone agrees that he does have some autistic traits. But not enough to push us over the line into that diagnosis.)

Both ODD and IE are only descriptive -- there's no treatment for them really except for environmental and behavioral controls. Which brings us back around to Anxiety and (ta-da!) Bi-polar. Along with a family system which contributes his flare-ups. (I'll take responsibility for whatever I can here, believe me.)

I do love it though when his various therapists (He has three now?) ask, "Is there any history of mental illness in your family?" ::laughtrack::

I'm really so proud of my son. And I'm fine with the addition and then removal of Asperger's as his main trigger. I got to learn a lot about it, and who knows, it may indeed underly some of this. Who can say? What *still* gets me angry though is discovering that putting him in The Very Environment I Had Been Asking For All Along was instantly beneficial. Why the fuck couldn't his school have set up the damn behavior chart? Why the fuck couldn't the adults there have acted like professionals when he flared up? Why wouldn't they stop talking to him in that fucking sing-song voice which they KNEW sent him over the edge? AGH! I want to go shoot someone. (OK, not really. Not a threat, that would be bad.)

I was in the office of his old school picking up his little sister sometime in late May, when the principal walked in. We both said that we had been meaning to call each other to get an update on Saul. I told her how well he was doing, and after she asked what I thought mainly contributed to his success, I said, "It's completely consistent. The kids know going in what's expected of them, and they are held to that standard. Not one that changes day to day. If something new is going to happen, the are prepped days in advance."

"Oh. Well, that could never happen here."

Why the fuck not? Ugh!! Wouldn't other children benefit from a predictable environment? Educational research says yes, they would!

On the other hand, I've been proven right that the principal is an idiot and that she is running a dysfunctional school with unprofessional staff. I knew I wasn't crazy there.

One day I'll have to write something about watching your child stretched out on a blue wrestling mat in a parking lot on a hot sunny California day, with one adult holding his ankles, one holding his hips, and a third holding his arms to the side as he spits and swears at them all while you consider whether or not hospitalizing him in a psychiatric ward overnight is a good idea. It was completely unfamiliar yet strangely comforting. I could watch and know that he wouldn't be harmed, and I could finally just be his mother.


meljean brook said...

I just think you are so amazing.

How frustrating to see that everything you've asked for would have helped, and what a relief that there's finally somewhere that implements it. It's just unbelievable that you and Saul had to go through so much to get it.

I'm glad. Just, simply, so happy for you.

Beth said...

What Meljean said. And I'm actually sitting here crying with a vicarious relief/happiness feeling. I'm so fucking happy for you.

Suisan said...

Meljean-- next time someone complains about someone going into local politics so they can get inappropriate benefits for their family, remember that I was on the school board the whole time this was going on. I think I got special consideration in the *other* direction. It is a relief. And it does all ow me to sing to myself as I see these idiots in the supermarket, "I'm smarter than YOO are! I was right and you were wrong. Na-na-na-na-NNAAA-na!"

Beth-- Don't cry for me, Argentina!

It is a relief though.

He came down this morning as I was typing this to stand beside me with a huge grin on his face, new freckles on his face from being out in the sun. He finally looks healthy, not pasty and scared half the time.

Megan Frampton said...

Thank god Saul has finally gotten the help he needs. I am so, so happy for you and your family.

Thanks for letting us know, we've all been rooting for you.

Kristie (J) said...

I've been reading about you travails with Saul and with your *sorry but* wacky mother and I am awed that you have kept your sanity and your sense of humour.
I'm glad that things are working out so much better for him now and shaking my head along with you that it has taken so long.
You are a very strong person!!!!!!!

Suisan said...

It really has taken forever. I still find myself checking the clock a lot between 9:30 and 10:30. Then I have to ask myself what I'm checking the clock for. Oh, right. Waiting for the phone call from school. Ho HO! I can have a cup of coffee undisturbed! Weee!!

Poor thing though. He's been through the wringer. But his new (male) therapist is very intrigued by him and his intelligence. I feel confident that they'll get somewhere good together.

Still want to go freaking pound some heads at that school though. Ugh.

CindyS said...

Yay for Saul!

And as a child who had anxiety (although not diagnosed), can too have it!!! Stupid people make my head hurt.

And I'm glad you get to just be his mother for a while.


Kate R said...

Thank goodness. At long last it's nice to have something go his and your way. Tough, still, but Yay.

web said...

Hi - I subscribed to your blog after reading your insightful review of Black Silk and now I find out you have a special needs child, too. I have a son with high functioning autism.

I'm curious, why do you think the structure working eliminates Autism as a diagnosis? Autistic children are generally very responsive to structure. My little guy gets very anxious without it. Trying to hold things together for him this summer is kind of a nightmare.

Suisan said...

Hi Web!

Welcome to the wonderful world of the autism spectrum. It's a very interesting place.

At this point no one has actually ruled out ASD (Autism spectrum disorders), but there's been some discussion about it. Structure is absolutely critical to autistic children, and autistic children do thrive within clear structure, no doubt.

However, an autistic child will still experience frustrations and will still misinterpret communications even when he is in a structured environment. The structure helps ease some of the explosive reactions to miscommunication, but the disorder still persists.

This doesn't seem to be happening at this school. My son is mostly angry at other students and is unable to tune them out (like when they keep whistling after he's asked them to stop, for example). However, he is very communicative with adults once he trusts them.

Also, according to his current psychologist, Asperger's, especially on the very high functioning end, is something they prefer to go to once everything else has been ruled out. Anxiety runs in both parents' families, and bipolar and OCD run rampant through mine. We have one nephew on my husband's side who seems to have Asperger's, but that's about it.

With the high family rate of depression, substance abuse, anxiety, and bipolar, it sort of make more sense that he *would* have one of those diagnoses.

Lastly, the medication you'd use for an Asperger's child is basically going to be mild tranquilizers or anti-psychotics like Risperdal and Seroquel. Some "Aspies" also respond to very tiny doses of anti-epileptic medication. If he has bipolar, the drugs you'd be most likely to use are mild tranquilizers, possibly Seroquel, and/or maybe something like Abilify. We'd be most likely to try to stay away from stimulants such as Prozac, just incase he *is* autistic. Autistic children can have very bad reactions to stimulants.

Ultimately, the medical treatments aren't *that* different between mild Asperger's and pediatric bipolar -- most of that is because there really isn't much in the way of medication for Asperger's. You're treating the "maladaptive behaviors" which com along with ASD, not the ASD itself. If we start looking at bipolar, we have a few more options open to us in terms of variety of medications.

So I guess what I'm saying is that a lot of this is really something of a hedge. His psychiatrist doesn't see bipolar, but sees high levels of anxiety and possibly an auditory processing disorder. (I know a number of parents of autistic children. Every single one has recommended getting an in-depth auditory processing screening test, something which we haven't done, but you may want to.) Saul's psychologist doesn't see ASD, but sees his as having very high levels of anxiety, and sees the family structure as being part and parcel of the issue too. (Birth Order, pre-language stresses to the body and to the minds, etc.) His other psychologist who will running ten hours of psychological testing on him to fine tune the diagnosis really doesn't see the autism at all. The principal of his current school has said a number of times that the program is not effective with autistic children, and I haven't figured out why she says that.

So I dunno. This is where I throw my hands up in the air and say, "OK fine. Let's go with what works and figured out what box to check later."

Ultimately, Saul is a multi-disabled child. He's not obviously an "anxiety-only" kid, and he's not obviously an "Asperger's-only kid." He has symptoms and signs of a variety of different disorders, some of which, like ODD, are really only descriptive.