February
25
2019
Some people remember dates for birthdays. Weddings. Graduations. Tragedies.
And me....?
I remember the day we got our ASD diagnosis.
And how could I not remember? After 4 years of advocating, 18 months of waiting for the referral, and another 6 months for the actual appointment date......when they call you with that date you don’t forget. Or Cancel. Or reschedule. You do, however, stress, agonize and over prepare.
I told Sophie-Lyn that she had an appointment to see a doctor that was going to tell us what kind of brain she had. I told her how much of a benefit this was going to be since it would tell us how we could help her body in the best way! She asked me for as many details as her little brain could muster up questions for. Where the appointment was. Was the doctor a boy or girl. What was her name. Would she get a needle. What would they do. What would the chairs look like? I told her what I knew and also told her they would talk and maybe do some puzzles. I honestly had no idea what they would do.
I was so worried that they weren’t going to see what I had been seeing for the last 4 years. After all... how could they? 90% of the time she presented as a happy, typical child. It was only noticeable if you took the time to look really closely at her traits. Or when she was struggling. It was the 10% of struggling that I really needed them to see in order to get this diagnosis - and it was the part they were least likely to see in a quiet room in a 1:1 setting.
I debated pulling her off the diet I knew would send her over the edge. I debated taking her off her supplements a few days before going in. I debated feeding her a big fat juicy popsicle full of red dye.
In the end, I did take her off her supplements for the day but I couldn’t bring myself to do any of the latter and risk sending us back into the downward cycle that had gotten us to that point in the first place. Even if it was temporary... life was not really manageable before that diet.
I did show up to the appointment armed with teachers reports, BI observations at school, and a list of very well researched reasons I believed that pointed to her being on the Autism Spectrum.
The morning before the appointment I sent her to school anyway determined to keep her morning schedule as consistent as possible until I needed to deviate. By 10am that morning I had gotten a text from the teacher... She was not a happy camper.
I picked her up and as soon as she got into car she was happy as pie. She brought her baby blanket (which was not typical for outings) and her stuffy and we were off.
We were sitting in the waiting room and she started to get slightly agitated with nerves. I was trying not to calm her down too much in order to help the assessment along when the time came.
When the dr came out to talk to her she instantly hid under her blanket and wouldn’t make eye contact or say hello. The lady was good... she introduced herself to her stuffy and had her out from under the blanket in less than 2 minutes and right into her office well I sat and waited in the waiting room flabbergasted. My first thought was “Well SHIT”. That was a little too easy for them. Lol
I sat in the waiting room a bundle of nerves for 45 minutes while I could hear her over exaggerated laughter and non stop chitter chatter. All I kept thinking was - this lady better know she she is doing! lol
My mom was with me. I can’t speak for her but I’m pretty sure we were on the same wave length. I told her I still get my turn to convince them
So not to worry. This Mama was definitely on a mission!!!
When I got called in my mom took her outside to keep her busy and I sat down and the doctor seemed thoroughly amused by the encounter but the first thing she said to me was “I assume your after very high functioning ASD?”
I began to breathe a little. Yes. High functioning ASD. You are very good by the way... normally In waiting rooms and doctors offices she screams and melts down. I showed her the text from that morning.... you would never believe that this was the same kid you just had sitting in here just now.
We talked. She asked some pretty dead on questions. Did I ever teach her to make eye contact. She will make it but won’t hold it. (YES!! She saw it!). What is with that over done laughter? (A show... just for you!) She asked questions about some of the things she had told her. She said she talked about her brother like they were the same age - but she realized farther along that her brother is only 2.
I got my chance to put up my list.
2.5 hour melt downs.
Sensory processing disorder - scared of bathrooms etc.
Delayed motor skill development
Lack of natural empathy that needed to be taught
Inappropriate responses to emotion or serious situations.
Inability to adapt to change.
Schedules.
Lists.
Consistency.
Melt downs.
Melt downs.
Melt downs.
I was only in there for 25 minutes.
20 minutes later I got the diagnosis!
AUTism Spectrum disorder.
This is not a child that is refusing to behave in her environment. It’s a child that can’t handle her environment and can’t regulate.
I hugged her on my way out the door.
Your changing our lives! I told her.
Yes! finally!
4 years.
2 years of waiting.
Finally... help was in the light!
It was.. and still is... one of the biggest turning points in the game for us.
If I can give you any advice - it’s to look at this diagnosis like only a positive. It means people will understand your child. It means you can pick up the phone and talk to someone and actually get advice. It means they’re are going to be people around you that will change your lives.