I wrote this a few weeks ago for To Autism with Love. Life has been chaotic for them but I thought this message was worth sharing. They will share it again when life slows down for them.
Autism by the Numbers:
Emelie was 11 before she received her formal diagnosis of Autism. We waited 11 years through confusion and anxiety for answers. We waited for 11 years to understand our daughter and figure out what therapy would work best for her. We waited 11 years getting told that we wrong about our autism connection suspicion.
The early years had some red flags but we were in denial and dismissed them as over reacting parents to our baby girl we almost lost. We’d talk to the pediatrician about our concerns with these red flags and symptoms and she’d reassure us. For 6 years we’d bring delays, tantrums and meltdowns, aggressions, lack of wanting to play, her obsessive natures, the sensory issues, the gross and fine motor skills issues, her health and the list goes on. Hindsight is 20/20.
When she was 7, we’d had enough. She had her first full blown nonresponsive meltdown. It happened in a school environment and led to CPS being involved. We demanded a psych referral and did due diligence and the case was closed without going any further than interviews. The caseworker saw the situation as a “misunderstanding of events of the reporting party”. That started us down the path of medications for Emelie.
From the time she was 7 until now, at 12, she’s been on 10 or more medications/supplements and at one time was taking close to 15 pills a day. She has seen almost 10 doctors, specialists, and therapists: 2 pediatricians, 2 psychiatrists, 2 occupational therapists, 3 doctors at children’s hospital (1 for her blood platelet issues, 2 for her thyroid), 1 counselor, and that isn’t including all the urgent care/emergency room doctors who got to know her or the doctors that fill in when hers weren’t available but we could wait to see one. This is just the ones I remember too.
We asked at every appointment after she turned 10 if they were sure she was bipolar as the meds weren’t working or helping. Every appointment was 6 weeks apart. We asked specifically about Autism and were told all the reasons she wasn’t. Even when I pointed out all the reasons and history why I believed she was. I was told over and over that I was seeing what I wanted to see.
Funny though, when we found our new psych and I laid out all the reasons why I thought she was, and all the reasons I was told she wasn’t, she told me I wasn’t crazy. It took 11 years to find answers but once we had them and Em’s diagnosis reflected her, Autism Spectrum Disorder, Sensory Processing Disorder, Anxiety, ADHD, and PDD-NOS we were able to finally see progress.
In 18 months this girl has found ways to cope with her sensory overload, drop to 2 medications and 4 vitamins/supplements taking only 5 pills and 5 chewable gummies daily. Mind you, she doesn’t take them all at one time. She is now not eloping and finding ways to push through. She is reading books that are age appropriate. She found her voice.
We still deal with regression and having to have a fluid schedule for days when it’s just too much. Yet, it seems we still are gaining ground. Instead of for every 1 step forward before and 2 steps back, we are taking 2 steps forward and maybe 1 step back. There is hope. Always hope.