First therapy appointment

While we have had Speech Therapy and Occupational Therapy to address BW's issues, we have never tried behavioral therapy. So due to escalating anger issues at school, he is seeing the school psychologist and I thought it would be good to have another professional in on the action. BW has terrible anxiety and his meds apparently don't even touch it.

Or, oh God. Maybe they do and without the meds, he's be curled up under his bed. I don't know.

I do know that when he was in kindergarten and I finally had enough of physically peeling the screaming crazy kid off of me, I snapped. I got in the car, called his pediatrician for an emergency consult, and went and pulled him out of class. Then while we are waiting for the doctor he runs and plasters himself against the wall around the corner from the office tv. I walked over and said softly, "Whatcha doing buddy?"

"Hiding from that show," he whispered.

"The Mickey Mouse Club is scary?"

"Yes, it's very scary."

After I told the doctor that she pulled out her prescription pad and we were on our way. And school drop offs became much easier over the next few weeks. But when his anxiety is super high, like right now- he wants Mommy all the time.

The new therapist- I met with her first and frankly I should have known better. Boy Wonder does not do well with people who are super no-nonsense. She asked me if I had him GFCF because sooooo many of her clients had been helped by that.

I do not listen to anything about GFCF unless it is the parent of an autistic child telling me. Why? Well, that is another post. And she was having a serious medical condition treated by her naturopath, had I tried naturopathy? I told her about my friend, who in her quest to cure her child's autism, has spent upward of $50,000 on diets and DAN doctors and naturopathy. Hasn't helped a bit. Know what HAS helped? Pharmaceuticals.

And I am not saying it's all crap. LOTS of people with autism have serious gut problems, and when you take gluten and casein out and help them not be in PAIN, yeah. Their behavior is going to improve by leaps and bounds.

But BW doesn't have those problems.

Then when he goes to meet her, he tells her he's scared of growing up. He does not know what will happen and that is scary. Guess what she says?

She says, "Well, you shouldn't feel that way. Growing up is awesome!"

The playroom was a wreck that looked like it had never been vacuumed, she talks way too loud for ME to be comfortable, and then she informed me I jump in to help him regulate when he needs to be self-regualting. Well, considering the alternative is that I pay you nearly $100 an hour to watch my kid have a massive meltdown in your office, yeah, I'll choose to help out. Because I can watch him have a meltdown at home for free.

He hid in a tent and cried to go home. In his WHOLE life and the large number of therapists, teachers, and doctors he has seen- I have never seen my son react like that.

So I guess we are going to look for a new therapist.

And in relevant news, the DSM-V

Our first developmental pediatrician appointment was a joke.

I cried all the way there. I was terrified down to the marrow of my being that a certified medical professional was going to bring the disaster called AUTISM crashing down on us. Mr. Man thought I was being ridiculous. After all, autism is like Rain Man and he obviously is not counting toothpicks, so...obviously I was exaggerating and panicking for good reason.

But...I had been reading things. Blogs and diary accounts of mothers that had children with autism that came up when I googled Boy Wonder's quirks. Not talking. Turning in a circle. Lining up his toys. Stopping to study wheels like he was tiny caveman who'd never seen them before. Tantrums that could not be stopped. Not responding to his name. There was one lady's account, whose little boy was barely older than BW. His diagnosis was PDD-NOS, his symptoms an eerie echo of my own child's.

Pervasive Developmental Disorder- Not Otherwise Specified.

We walked into the appointment to find a doctor very near retirement age. Maybe past retirement age. I immediately balked because I have a problem with paternalistic doctors. He read our paperwork, asked us the same questions for which I'd already submitted written answers. Questions about his birth, complications, baby milestones. Mostly it was an excuse to watch BW as he puttered around the room, looking at toys and ignoring us.

"Call him over to you," he instructed.

"Boy Wonder," I said. His little two and a half year old self played on, oblivious.

"Boy Wonder." Nothing.

"Boy Wonder!" I practically shouted. His little head jerked up, surprised. He looked me in the eye and I smiled at him. See, not autistic!

He toddled toward me and crawled up in my lap for a snuggle. I nuzzled his soft baby hair and held him close.

"He seems very attached to you," the doctor mused, noting something on his clipboard.

"Yes, he's very affectionate," I replied.

After 15 minutes, he gave us the verdict. PDD-NOS. He needed speech and occupational therapy. One day he might outgrow the diagnosis!

What do we do about regular things, I asked forlornly. How do we take him to restaurants and the store and teach him to behave?

You don't. That was his answer. Also you should read Dr. Brazelton (whom he studied with at some point), that will help with behavior problems. (HAHAHAHAHA. Riiiight.)

And after we booked his speech therapist appointment was booked, we were sent on our way, without even a handout. When we got in the car, Mr. Man said "Well, at least it's not autism. It's just a delay."

"No," I cried as we started to drive away, silent tears sliding down my face. "No, PDD-NOS is a form of autism."

And that was the beginning.

In the months that followed, I found numerous cases where doctors, trying not to panic parents, had initially diagnosed PDD-NOS. This prevented hysterical in their offices where they would have to deal with it. Let them use the internet to figure it out at home! Don't say the A word!
They have been trying to change the diagnostic labels for Asperger's and autism for years now. The DSM-V has finally announced what the diagnostic label will be. ASD- Autism Spectrum Disorder.
Now Asperger's, classic autism, PDD-NOS will all be Autism Spectrum Disorder.

http://www.msnbc.msn.com/id/50041812/ns/health-mental_health/#.ULvztmg1YlI

This panics the crap out of people, because these labels are what people need to get services. But I think lumping everyone in one category will be beneficial. I myself am already tired of explaining the differences between Asperger's, high functioning autism, low-functioning autism and PDD-NOS.
(For the record- Asperger's means they never had a speech delay, HFA means the had a speech delay but now can speak, low-functioning autism means they have no or little speech, and PDD-NOS means they don't have all the symptoms, just some. ) But people with Asperger's can have just as many issues as people with classic autism, and people who are non-verbal are can use other means to speak sometimes. It's such a huge spectrum of abilities and splinter skills that I like ASD better. And it means that it's a lot less likely that parents can walk out of a doctor's office not realizing their kid is autistic because the doctor didn't want to panic anyone.

It would take another 18 months, a psychologist, 2 days of testing and $1800 for someone to tell us what we already knew.

High functioning classic autism.

Welcome to Whirligigs of Fun!

A long time ago, in a galaxy far, far away...

I was finishing up my bachelor's degree and looking for a job, married to the nice guy that I met in college. Mr. Man had already finished college and was happily employed.

And then the inevitable happened- or at least the inevitable when two people do not use birth control. I got pregnant. I was planning on making the "it's time to up the ante because I appear to be infertile here" appointment with OB/GYN in the next few months, so we were thrilled. Sure, it kind of killed my job hunting plans but- a baby! I was 29 and I had always wanted at least 3 kids. I was the 16 year old girl in high school who fantasized about babies!!! and terrified her parents into handing her the Pill. I wanted a baby so badly...

And he was perfect. A beautiful baby with big gray eyes who was very into his mommy. Then he turned 2.

I remember the moment I realized something was wrong like it was yesterday. Our college friends came into town for a wedding and they had never seen Boy Wonder, so I was excited for them to see him. They walked into to our dinky apartment and BW...didn't notice. Pretended they did not exist. Then he proceeded to turn in a circle for 10 minutes. I started hearing myself say awkwardly, "he doesn't talk much, but we're sure nothing is wrong. He turns in a circle all the time but we don't think he's autistic or anything." And in that awkward 30 minutes, I realized that I did think it. 

Something was wrong with my baby.

But being someone who is prone to hypochondria, I convinced myself I was panicking. He is a a boy! They don't talk as soon as girls and after all, he walked at 9 months! What was I worried about? Finally, my mother accompanied me to a well-child appointment and bullied my pediatrician into making a referral for a developmental pediatrician. The appointment would be in 3 months. 

3 months to worry, wait, and fill out mountains of paperwork.