Buttons is our youngest, she is 2 1/2. For the first year of her life she developed just like Princess did, she slept well, ate well, played with us and on her own, hit all her milestones, started saying simple words at 10 months and had a bunch of words and signs at a year. Then she didn’t. She lost her words, she lost her signs she stopped sleeping through the night, she started having terrible meltdowns and thing started going sideways. That’s the biggest difference between Buttons and Monkey.
Monkey has been the same monkey his whole life, he has never slept well, bath time was a nightmare from the very first day, he had unexplained fevers as a newborn, would scream for hours on end, was slightly behind on his milestones and was a very picky eater. He refused to crawl, which we later figured out was because of his tactile sensitivities, he struggled with food textures, had horrible separation anxiety and would have terrible meltdowns, violent fits of rage from a very young age. He was born with Autism and it’s obvious when we look back at even the first six months of his life.
When monkey was 5 1/2 Princess was born. Having a second child really made me realize how many of Monkey’s quirks were not typical. Princess was sooooo much easier, yes she cried but when she did you could figure out why. She had a different cry for “I’m hungry” than she did for “I’m wet” she slept for longer than 10 minutes at a time, she liked being swaddled, the list goes on.
Buttons was born when princess was 20 months old. Thankfully other than some terrible acid reflux, Buttons was a pretty easy baby too, she slept well, nursed well, developed the same way as princess did, until around 13 months. Then she lost her words, forgot her signs and started started stimming. Turns out I’m really good at denial. I remember thinking “no, no, no please start talking, please start talking and stop lining up your trains, please god just stop lining up the trains and say something!” I pushed signs in a big way, we had baby signing time and signing time with Alex and Leah on endless loop, I signed everything, formed her hands into the signs and made her do them, and around 18 months it clicked. She started signing and not just more and all done, by her second birthday she had over 100 signs in her vocabulary and “words” started to come back. I got a referral to speech therapy around that time, and at 27months buttons, princess and I drove to the next town for a language assessment. The SLP was really nice, but unfortunately for me and my happy little place of denial, she noticed a few things about buttons too. She noticed she doesn’t make eye contact for longer than a split second. She noticed that her words were not always her own but often just an echo or slightly modified repeat of what someone else had said. She called buttons “interesting”. She said we needed a referral to a pediatrician and probably the infant development program. She stomped on my denial, and sent us for a hearing test.
I called the IDP and self referred for an assessment, booked the hearing test and quietly slipped back into my comfy little place of denial. The hearing test came back normal, the IDP met with us and put buttons on their wait list and that was that, I didn’t book an appointment with the Pediatrician, after all buttons had words now and they were coming along quite nicely. No problems here nope, and I hate wait lists, Monkey was already on the mother of all wait lists for his autism assessment. How many wait lists should one family be on?
Monkeys time on that wait list was almost up by that point. Our meeting with the SLP was in September, IDP was in October and Monkeys ADOS test was at the end of November. The results of that test helped snap me out of denial, partially.
Monkey was found to be Autistic, no big surprise to any of us, even his Bio dad accepted the diagnosis without question. I think we all knew, deep down we all knew, we just didn’t want it to be true. You notice I said Bio dad? Yeah Papa Bear isn’t Monkey’s biological father, he’s been in his life since he was 2, and has been parenting him and supporting him and loving him since then but no blood relation, that’s how I held onto the last little shred of denial I had left about Buttons. They are half siblings and to admit she might be autistic or have autistic tendencies was admitting that Monkey’s differences could kind of be genetically my fault. I know it’s no ones fault blah blah blah but I’m the only genetic link between them, you do the math. Don’t worry I’m not wallowing in pity or anything, I just have a rational thinking brain and can make simple connections and accept them for what they are. Anyway enough about me, lets get back to the story.
After the diagnosis I had no choice but to pull my head out of the sand and really look at what it was that we had to do to help Monkey meet his full potential, I poured over websites and books and read up on therapy methods and funding and every site on the Internet and every book about autism all have one thing in common, they all list the signs of autism, they all say to make an appointment with your pediatrician if you see things like a language delay, especially if you see language regression, if your child walks on their toes, flaps their hands, spins, avoids eye contact, has trouble sleeping….. I could go on but I think you get the picture. I was panicking on the inside, I was the only one that saw these things in Buttons. Was I imagining it? It couldn’t really be that bad or someone else would have noticed right? I mean someone other than the SLP and the woman from the IDP, surely it must just be in my head right? Oh how I loved my denial. One day my denial crumbled, it crashed to the ground in tiny little pieces too small to hide under and it started with one little joking phrase uttered by Papa Bear. Princess was doing something crazy like 4 yr old princess ballerinas do and he turned to me laughing and said “and she’s the neurotypical one right?”
The my mom and I were talking about getting Monkey’s funding in place and she said “So now is Buttons getting some help too?”
The phone rings at work and it’s the daycare, Buttons is having a meltdown, it’s been going on for over an hour and they don’t know what to do. I find myself explaining how to roll her into a blanket and apply deep pressure to her joints to ground her and bring her back. “Is that an a autism trick?”
TINKLE TINKLE TINKLE the last pieces of my little denial shield fall to the floor. “Yeah it is, I’ll be right there”
Guess it wasn’t just me…