I saw an info graphic on Facebook the other day that I shared, and it got me thinking about a blog entry I've really been wanting to write. Please keep in mind what I'm about to share is pretty personal to me so please bear with me and understand I'm not speaking collectively, these are my own thoughts.
Back when I was in school, there was no such thing as the autism spectrum. There were kids who were autistic, and there were a couple "subsets" so to speak of autism. But when you thought of a kid with autism you thought of a child who was pretty severely impaired socially and cognitively, maybe not even speaking at all.
Well, in recent years, this definition has changed. Autism has become a spectrum that encompasses a group people with a wide range of strengths and weaknesses of different measures in various areas. I read a quote once that I loved. It said, "if you've met one person with autism, you've met one person with autism." I think if there is one thing that all people should understand about ASD, it's exactly that.
Hartley is often very difficult to describe or explain to people. She is not severely autistic. In fact, if you met her and weren't familiar with how other kids her age act, you might not even really notice that she's atypical.
I've had people ask me how or when I knew that something was different, and that's actually something I've wanted to share for a while but haven't been sure quite how to say it.
If you read my blog regularly, you might remember how this process all got started. Shortly before Hartley's second birthday, Brian took her to the doctor for a cold, and the doctor mentioned Hartley's language was "behind". In hindsight, this wasn't the most accurate way of describing what was going on. At the appointment, Hartley was jargoning, the fancy autism community lingo for speaking in gibberish. It's more atypical than it is "behind".
But that is what basically got the ball rolling. From there she was evaluated by the county to see if she qualified to receive speech therapy services. Then shortly after the speech therapist began working with her, our service coordinator said we should look into having Hartley evaluated for special ed preschool. They would go on to suggest that Hartley should also see a developmental pediatrician. Her regular pediatrician referred us to Children's hospital. The school system said that Hartley qualified for services under the label "developmental delay" but they also strongly felt she could qualify under the "autism" label. Then at our meeting with the developmental pediatrician she said Hartley was on the autism spectrum, and that she would notify that school system that Hartley was in need of early intervention preschool services.
But the strange thing was, I knew ages ago that Hartley was unique.
When Hartley was a newborn, she didn't like to be held. I remember telling seasoned mothers this, and they looked at me like I had 5 heads. My mom noticed it too, though. Hartley would cry for hours for no reason. People would say, "oh Page, babies cry". But she could cry for a couple hours straight for no apparent reason. I'd never seen any of my friends' babies do that.
That's when at 2 months, Hartley's doctor gave me an answer. "She's a very sensitive baby".
So as a new mom, I felt validated. I had an answer. When I took Hartley new places, she would scream and cry endlessly. Nothing worked to soothe her. She didn't like being out of our house. Again, seasoned moms had advice: "well, if you just take her out places, she'll just have to get used to it". Only she never did. Honestly, it was agony. It was isolating. I could only stay in my house or go out for walks just the two of us. In hindsight, I'm sure it contributed to how lousy I felt when she was a baby.
The older she grew, she became more okay with being out. She was still very much a sensitive baby, though.
I'll always remember my mom buying Hartley a bunch of hats because she absolutely despised the sun in her eyes. I'd drive places and if the sun were in her eyes, she'd scream until I fixed it.
She was constantly moving. To this day, I've never seen a baby who moves half as much as she did. She would never sit in my lap to read a book. I had to stop doing her "chair pictures" after her 7 month picture because she would throw herself off the chair faster than I could even snap a picture.
She was an early walker (10 months) but she was so clumsy. She face planted into cement right around her first birthday; it didn't occur to her to catch herself. To this day her legs are constantly bruised from falling.
The first time she finger-painted , she absolutely hated it. Just touching the paint threw her through a loop. She grew to love painting once we began using brushes, and she didn't have to touch the paint.
She has always been a horrible napper (and now, sleeper). She would just bounce in her crib for an hour until her "nap time" was over. She went through a phase where she'd head butt the wall, which wasn't as dramatic as it sounds but I hated it so much. I kind of just thought other kids did these things, honestly. And as Patrick grows older I realize how these things weren't that normal.
Hartley also did advanced things. She knew the alphabet at 18 months, out of context and in context. She was counting to ten at her 2nd birthday which is a 3rd birthday skill. I just thought, "wow! I'm awesome at teaching my kid things!" That bubble has burst ;)
My big indicator though that pushed me to do these various assessments was Hartley not responding to her name. I think as a parent this has been one of the hardest parts of this. It's actually far more challenging than it sounds but one day she got away from me outside. I kept calling her name, and she never came because she didn't respond to her name. It sounds so silly but it's really scary and sad when your child can't "hear" you. And as Patrick grows and he listens to me and comes when he's called, I'm relieved but I'm also a little sad that Hartley hasn't been able to naturally develop like that. She's definitely getting better but it's not the same.
One of the first screenings Hartley had was with an audiologist to make sure it wasn't a hearing issue causing things.
These things in hindsight were clues that something was "off". The developmental pediatrician told us that Hartley was born this way. And she comforted us by saying that even though Hartley has autism, she's got a lot going for her. Some children with autism don't speak; Hartley can speak. Some children with autism tend to be really unhappy; Hartley is happy. Some children with autism have impaired cognitive abilities; Hartley's cognitive abilities are actually "mature".
But sometimes people don't realize what it is exactly about Hartley that is different. She is very sensitive and very intense (people think all toddlers are but this is next level). She can be pretty obsessive (this actually has gotten worse lately. An example being needing to sleep with a bunch of specific Christmas ornaments). She has a hard time transitioning from one activity to another, and she isn't easy to redirect. Once she is in meltdown mode, she's almost impossible to reason with. She is pretty literal. She can be aloof, and she can check out from time to time. A lot of social nuances that come naturally to kids her age, don't come naturally to her. She has trouble answering simple questions where she has to do more than label. When she talks her speech is a little funny. It's choppy and backwards sometimes. She's echolailic so she often echoes the last couple words of a question back instead of answering.
Sometimes people who aren't around her often might say these types of things sound like just a different personality. I thought that for the longest time but as time goes on, Brian and I have both realized it goes deeper than that. It's actually difficult because we're trying to figure out the balance of how much to "correct" and how much to embrace as who she is. I let her sleep with ornaments but do I draw the line when she wakes up at 2 am and asks for a specific one that's downstairs on the tree? There's no manual for this.
My mom has said a lot of things that make Hartley different actually make her cuter. I completely agree with this. My girl has the absolute sweetest, kindest heart. She says and does so many quirky and endearing things. A lot of girls her age are sassy but she actually doesn't have it in her to be that way.
As time goes on, I've really evolved a lot to embrace and celebrate Hartley's brain just working differently. And sometimes, on my weaker days, I cry because I wish the hard parts were easier. Sometimes I feel like I'm living my life just trying to do whatever makes her happy, and it's an exhausting way to live.
I've written various entries referencing Hartley's ASD. But honestly I felt this urge to write this the other day. I sometimes feel like there's a great deal of confusion on autism. People don't fully understand it because it is so different for everyone affected. But this is what it is in my family.
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