Hi! Sick of me yet? You will be, I’m A LOT.
So I thought I’d write a few words about being the parent of an autistic child. It is not an easy thing to summarize, and no two kids with autism or without are the same, so this might not be your experience but for those out there who are experiencing ANY aspect of this, I empathize!

I’m a mom and was a daycare worker for years, and yet when my youngest came along I was incredibly ill prepared for her special brand of antics. We didn’t really worry much when our little one missed some verbal milestones, every kid is different and we knew she COULD vocalize, it was almost like she wanted to study words and letters, how they felt coming out of her mouth, I swear she vocalized every combo of sounds you can think of just none in the combos that meant actual tangible things. So when she hit age 2 she had enough of a deficit in the language skills area that we were sent to a specialist. Honestly, getting her diagnosis was a turning point, we could put a name to it, develop strategies to deal with it, like the devil you know argument. So to the google I went to learn everything there was to know about how to give her the very best chances in life.

If I were to give advice, it would be absorb all the info you can from the experts, same as you would with anything you had no experience with, but in those experts, know who speaks your language and can answer your questions honestly in ways you can understand, because in the end, you’re all working towards the same goal. For me that was through a program called Parents As Teachers. I met the greatest people, I really did, and I loved them like family. We got her immediately into other therapy programs, started her in preschool soon as they’d take her, and had home based therapy for at least the first year maybe two. Those pivotal years right before regular school starts where they get more one on one time. We all learned some basic sign language, and for some reason that worked. I’ve always been confused about why it worked, because she’s learning the words but not saying the words with her mouth just with her hands. By the time she was school age she had the expected vocabulary and had grown exceedingly easier to understand, though we did rely on a small group of people who ‘spoke Z’. The way she words things to this day still confuses me, like if she’d like something she’ll say ‘there are Gatorades in the living room’ when what she actually means is ‘hey, I saw the Gatorades out there, MAY I HAVE ONE?’ Lol, I have countless quotes of the way she words things that I was smart enough to stick on facebook any time one gave me a healthy chuckle. One of the more recent examples of this was this year, in her doctors office they gave her a wellness checklist of some sort, but they just gave it to her, no explanation and expected her to fill it out and give it right back, meaning we didn’t see it. That’s fine, I don’t need to input anything she can speak for herself, however, I feel like they are treating her for her age rather than her mental age which is a few years slower. I knew it didn’t go well when they doc came in and put the rolley chair so they were between us and her, and said ‘so why do you hurt yourself?’ Speaking of self harm, where she thought the question was more of a ‘do you trip fall and hit yourself on things’ and she was just telling them she was clumsy. She also is a very literal child, for as indirect as she words things sometimes, and she lives in a house with two of the most sarcastic parents you’ll ever meet. It was hard, but what options did we have? I feel like through her we all learned different ways of learning things so we could teach her better.
She wasn’t fully potty trained at five but she was speaking more and phasing the sign language out in favor of speaking. She had a wonderful, amazing, committed teacher who had her for all of her preschool years (shout out to Ms Tracy, you are an angel and we love you).

As she got older, it was the meltdowns that got us pulling our hair out. I can’t tell you how many times she’d hyper fixate on something (usually a food) and she’d only have that one thing…. Until she was just dead to it. So many times, you buy as many chicken nuggets as your freezer can hold because that’s all she will eat, then one day she wakes up and says ‘no I HATE chicken nuggets’ then it was a corndog kick. We tried to explain to her she could have both we could rotate things, she wasn’t having it. So quick to use words like hate and just switching things off like a switch. She did it with movies, she’d have one playing on a loop since she was like 4 and could figure out the remotes. THAT was a kicker. We had to put a LOCKING gate on our kitchen entryway because we kept waking up to her helping herself to the fridge. She was SO smart in someways, I would watch as she worked something out in her head, so her not knowing how to say things confused me, because I’ve always been the opposite, I have the words but not the figuring out skills. It was very conflicting. School was a blessing as she started to fall into line a bit and get a bit more structured, but it came with its own struggles, she was ‘misplaced’ more than once, as recently as THIS YEAR by the school and also because she doesn’t pay attention. To be clear I do not fault the school for the issue this year but there were no check and balances or we wouldn’t have this problem still.

She still has meltdowns, they have thankfully become less frequent which good considering she’s bigger than me now. The biggest concern there was she would frequently shut off in the middle of a melt down and there was no reasoning with her she’d just lash out. A lot of times it was about keeping her from hurting herself. Like LITERALLY hitting and scratching herself. Other times it was about other people. We got a call from the school once because she threw a shoe at her teacher. Once it was called to the school with them telling us they could have called the cops on her for assault, and I think she was 8, they were just telling us they had that option and we were lucky they didn’t choose to use it. We decided early on that her being difficult with US was preferable to her being difficult at school. Most teachers spoke of her like she was a different kid at parent teacher conferences, but that’s common for a lot of kids I know.

When she was diagnosed, like in the meeting, the doctor tried to illustrate a point and he handed my kid a pencil and said ‘this is an airplane’. My kid looked to us like ‘is this guy an idiot? that’s a pencil’ The doctor then tells us ‘see? she has no imagination’ then moved along as if he hadn’t just totally gas lit my kid. I often think about that doctor and wonder why he still had a job because he could not have been more wrong in regards to imagination. She was raised mostly as a single child because my ex did not believe law applied to him and disregarded visitation schedules, so she got bored and invented kids to play with. She had the same imaginary friends for years, and in 5th grade she wrote a little bio about herself and had her teacher believing we had other younger kids, a dog, just a whole narrative of inaccurate info. She started talking about them, and people kept telling us she’ll grow out of it, unfortunately I think that approach failed us because while having conversations with yourself is pretty common, the fact that she did it around people and to all her made up friends around REAL kids who could have been her friends left her being seen as the ‘weird kid’ so the other kids would ignore her, so she relied harder on the imaginary ones who never made fun or disagreed with her, vicious cycle. Between people telling us this was normal and she’d grow out of it PLUS the pandemic we didn’t have the opportunity to get her tested for Schizophrenia and related diagnosis until last year. As expected, they don’t think she believes the voices to be real, and hubby and I are wondering if she lied to the doctor and on the test (which she filled out faster than anyone had the doctor said) because she is very good at coming up with an answer you want to hear. So much so that if you ask her a yes or no question, then ask her to explain why she answered that way, she will often times say the exact opposite. She doesn’t want to explain, she has more urgent matters that involve bouncing around (her stimming) and talking to her imaginary friends and she wants to get back to it. I’ve had more and more difficulty with meaningful conversations. That said, if we’re talking about one of her hyper focus things she’s surprisingly insightful because she will research things relentlessly, so long as its something she likes. Which changes at the drop of a hat. An invisible hat lol.

I love my kiddo and I know she’s different, but we encourage anything that she wants to do that involves other kids because its less time alone with only her imaginary friends. She’s a good kid and a fun kid and I want others to see that. I want others to see the similarities and appreciate the differences rather than thinking she’s weird or any kind of ridicule but we can’t save her from all of it, kids are mean. They did put her on some meds after I refused for years trying to give her brain time to develop. I also had to be convinced that I wasn’t just trying to give her meds to make my life easier. I didn’t want to drug her into zombie compliance. In the end its an individual decision but she’s in therapy and closely monitored. I’d love to hear from other Autism parents, brainstorm some tips to make the imaginary friends become less of an obstacle, maybe fade into the background once she gets to high school. There’s so SO much more I’d love to and will share with you at a later time but I wanted to bring Autism awareness and neurodivergence into the conversation. Until next time, stay kind to yourselves and each other.