Today is World Autism Awareness Day, a perfect time to share part of our journey.
Getting the diagnosis of Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) was not life changing, heart breaking, or even surprising. We always knew Sam was different. Sam's biological Dad is diagnosed with Aspergers Syndrome (AS) and it wasn't until a few months after Sam was born that I even knew that it was hereditary.
Sam was about 6 weeks old when we first noticed "oddities".
He attended the Spokane Guild and Neuromuscular Center from the time he was 16 months until he was 3 years old. All that time we anticipated he would get the diagnosis of PDDNOS, since you are unable to diagnose a child before they are 6 years old with Aspergers Syndrome. We knew he had Aspergers. We knew it. Like 100%. We've seen many many Doctors, Psychiatrists, Therapists, and Specialists - we all agreed that would be his diagnosis at the appropriate time. He received his first diagnosis of PDDNOS March 5th 2008.
After Sam graduated from the Guild School he moved directly into Head Start at a local elementary school and was enrolled until he began Kindergarten. He still receives "special services" (Speech, Occupational, and more recently; Behavioral Therapy.) and is in a social group at school.
A few months ago we went to the children's hospital for his re-evaluation and we planned to come home with his shiny new "Aspergers Syndrome" diagnosis.
It's taken me awhile to come to grips with things, but they did not change his diagnosis to Aspergers Syndrome. They changed it to Sensory Processing Disorder (sometimes referred to as Sensory Integration Disorder). THAT was a shock.
I can hardly handle going to therapy with Sam - evaluations are always horrible. I usually cry through them because it hurts to see them "picking" on him and doing things I know he wont like and I know they know he doesn't like! I have to try to calm myself because Mama bear wants to punch those jerks in the face.
I remember Sam's first evaluation, it ended with him curled into a little ball hiding under the slide, I was full blown sobbing. The therapists said they needed to see how far he could go, what his reaction would be, etc. But it was HARD. Our recent evaluation wasn't as bad as the first one, but let's just say by the end of the afternoon he had stripped down to just his pants and had taken all his other clothes off.
This was our first time seeing this particular child psychologist, since we haven't been here too long. Lemme tell ya when this woman I don't know and had never seen before tells me that my son does not have AS but SID, I instantly bristled. She had seen us for MAYBE an hour - she doesn't know the little things. She doesn't know the hours I've put in with all these other people, she doesn't know any of the back stories or how he was as a baby. Yeah, I'm sure she scanned his file to look for the obvious - did he talk early? No. But that's because he had 70% hearing loss until her had his ear surgery when he was 16 months. If you have a kid with special needs you know how big those files can be. I seeeeeeriously doubt she read every page. So yeah, sorry lady, you're wrong.
She told me how impressed she was at my "immaculate" file keeping and how "on top of things" I was regarding his medical file, but she was blunt, adamant, and to the point. He didn't have it, and when she asked me about Sam's dad she said she didn't think he had AS either. I was so angry with her!
I don't know exactly why I was so mad at her or why I had such a hard time accepting what she was saying other than that it's been a long road and I felt comfortable knowing what he had and reading every freaking book there was on the subject and taking countless hours explaining what he had to everyone! Does anyone else feel this way with therapists/doctors of any sort? They make a snap judgment and then act like you have no idea what you're talking about because THEY are the professional.... When I questioned her decision about it, she actually tried to make me feel bad saying I was trying to have him diagnosed with something he didn't have and why would I do that etc.
I've had to fight for him a lot. I've had to explain who he was and the things I thought were odd over and over and over to all these people, I've had HOURS of heated arguments with my husband. He is not typical! He's not! And to be honest my husband is still coming to terms with things himself so it's not exactly something I want to argue with people about - especially a stranger who kept telling me not all autistic children are alike and then goes to say he's not like other kids with AS so he must not have it.
Some days Sam is completely typical, other days he's completely Autistic. Like rocking, spinning (he does this as often as possible), hand flapping, chewing things, flashes of anger, etc.
I haven't gone online to read all about this sensory disorder, I haven't changed the paperwork at his school, I haven't even gone to his follow up appointment with the pediatrician. Obviously nothing will change therapy wise, since he still has the same "issues" as before but I am just not comfortable with this!
It's hard. Hard to think about, to accept, to talk about, and to explain. I cannot stand when I meet someone and I explain Sam has autism and they give their own bits of advice. "No way, my son/daughter/neighbor/kid I babysit/pastor's daughter's friend's kid has that and Sam doesn't act like them at all."
Guess what? Not everyone is the same and that rings true for people on the Autism Spectrum. Hence it being called a spectrum.
I'm not sure why I feel like I have to defend him. I'm not sure why I am so hardened against the idea that he has something else. Why does it matter? He's the same person as he was before.
And honestly, I don't know. When I think about it, my heart beat slows, I feel sad, my brain feels like it's done laps around the earth. I'm just so tired when I have to think about it. Sometimes I just want to throw my hands in the air and let someone else deal with doctor appointments and filling out forms (My husband feels that people don't need to know unless they need to know - ie. not put it on his church form but put it in his school info) but the deal is, no one else deals with it. THERE IS NO ONE ELSE.
My son does not deserve to be anxious at school, bullied for being different, chastised by teachers and mentors for being "bad", and/or embarrassed for wetting his pants on the bus because he can't handle the stress of the riding the bus. No child does - and that is why I fight for a correct diagnosis for him because having the right diagnosis is the only way I will be able to collect and utilize the correct tools to build him up and provide a safe place for him, to teach him to cope in a very big world.
Use your mommy intuition - it's there for a reason. I'm using mine and I'm going to get a second opinion.