If you told me 3 years ago that my daughter would one day be talking in full sentences, dressing herself, and proudly walking her little sister to class, I wouldn’t of believed you. Around 18 months, Olive had started speech therapy. By two years old she had been evaluated, and diagnosed with autism. While we were happy to finally have answers, watching my child struggle and feeling helpless was the hardest thing to endure.
In the beginning we were told she had severe autism and was non verbal. She didn’t point, babble, or respond to her name.
As an infant she would vigorously shake her head back and forth. I was terrified she was having seizures, but it was later confirmed that her head shaking was all voluntary muscle movement. This continued but gradually turned into ‘flapping’ and other means of stimming. She would do this when she was excited, overwhelmed, or trying decompress. She wouldn’t make eye contact, but was always extremely friendly and outgoing.
As a toddler she would purposely bump into things or people. I would catch her sandwiching herself between couch cushions and pillows, or flipped upside down on her head watching television. It took a long time to figure out what worked for her. She loved playing in the pool and taking a bath, but would cry every time she got out. Certain clothes she won’t wear, like jeans. She has always been under responsive to touch, and even pain. A lot of this was explained to us when Olive was diagnosed with sensory processing disorder. This explained a lot of her behaviors and texture preferences. She craved compression and would find ways to “sensory seek”. Olive’s diet consisted of about 4 or 5 foods, cooked and cut in a precise way. She struggled with over stuffing her mouth, or would refuse to swallow her food.
By the time she was 3, she was having serious food aversions. She would gag while eating, struggle with swallowing, and refused eat food at some points, and I could never understand why. Unfortunately, this caused her to lose weight and added to her already troubled GI system. Potty training did not seem likely, and she was constantly in extreme discomfort.
When Olive entered public school she had only previously been at home with me and her younger sister. She started kindergarten last year, and was in a main stream classroom, and received therapies through the school. I had prepared for the worst and hoped for the best. That year she learned a lot, and her speech took off. She struggled a lot with the routine, and even more so when the routine was broken. She would have meltdowns, and become unconsolable. It would take one seemingly small incident that could set her off into a meltdown. I would get calls and emails saying she would be having a hard time, and I would go pick her up from school. By the end of the year at her last I.E.P. meeting, we were told she had not met a lot of her requirements and would not be moving forward. Even though we knew it was best, it was still hard to hear.
We are now into our second year of kindergarten, same teachers, and the same classroom. This year has been completely different than the last. She’s right where she needs to be. I have been absolutely blown away at how much she’s learned. She’s counting, spelling, reading site words (a lot of them!), writing her full name, starting to write sentences, and her speech is has improved so much. Socially- she’s been playing with other kids, and making new friends. She’s learned the days of the week, and months of the year. And most importantly she’s conquered the majority of her I.E.P. goals for the year. This year her and her sister did dance and soccer, and love it. She’s lost 4 teeth, and genuinely got excited to see Santa. Seriously what more could I ask for?
Even with so much progress being made, looming in the back of my head is the fear of the uncertian future. It wasn’t until my daughter was diagnosed with autism, that I became aware of just how unaccepting and dismissive people are of what they don’t understand. The idea of my daughter growing up in a society that views people on the spectrum as ‘broken’ or in need of an antidote, leaves me feeling angry.
I hate that there are people desperately hoping she’ll “get better”’ and “won’t be autistic anymore.”
Meanwhile, a large part of society thinks ‘pity’ is a form of compassion- it’s not. It’s so frustrating. I don’t want people to feel sorry for me, or view my child as some sort of burden. Her and her sister are my whole world, just as any parent feels. And I 100% love and accept her as is. My concerns mainly fall onto the lack of acceptance and inclusion there is for the autism community. I don’t want to live with this fear that my child is being made to feel less, or treated unfairly for being different. People shouldn’t have to fit a certain mold to be considered worthy or treated as an equal. People on the spectrum are at a much higher risk for depression, anxiety, and suicide. They are more likely to be bullied and subjected to abuse. I can’t help but be alarmed and concerned for the future. Honestly, all you can do is take it one day at a time, and hope the rest eventually falls into place.