What would my neurotypical child be like?

That is the question most autism parents have thought but never said out loud because they're afraid it means they don't love or appreciate their child as they are.

My kids were both diagnosed on the mild end of the autism spectrum. I will admit, it makes my life a little easier and my worries a little less than what they could be. But they are still on the spectrum, and so I do worry. Sometimes I feel guilty for worrying so much about my kids. Like a parent's level of worry should depend on which end of the spectrum their child falls. I know there are individuals that struggle far more than my kids with communication, sensory issues, motor skills, etc. so sometimes I tell myself that my kids must not be on the spectrum. They can talk, they have no motor skill deficits, very few sensory issues. I tell myself I am imagining or exaggerating the whole thing and they should have never been diagnosed or that they have "outgrown" it. I tell myself that they seem almost typical....almost. But what I've learned is that it doesn't matter which end of the spectrum they are on. There is not a competition between individuals on the spectrum to see who needs less or more therapy or who can speak the most words or have the least amount of meltdowns. We all have our struggles and our journeys. We have all had to adjust our lives to accommodate therapies, behavior issues, and our finances, among many other things. I am allowed to worry.

I worry the most on days I get to witness neurotypical (NT) children talking and playing. When you have never had a NT child, you don't know which milestones your child "should" be reaching based on their age because you've never seen it firsthand and after a certain point you lose track of the milestones charts the doctors give you and you start using your own imaginary, slow-motion chart. The older my kids get, the easier it is to see the developmental "gap" between them and their NT peers. I watched a video of a NT girl today, and just watching the way she talked and interacted with her parents was hard to watch. She went to a mall with her mom in the video and didn't have a meltdown. Her mom never had to drag her out of a store. The daughter never screamed or punched or head-butted her mom. She didn't wander off, sending the mother on a full-blown search crawling under garment racks and behind dressing room doors. I looked up the girl's age, hoping she was at least 6 or 7. She was 5. She acted much older than my daughter, but they were the same age.

It's hard to watch NT kids the same age as your child and realize how much distance is between them developmentally and behaviorally. It's hard because you spend all of your time being so proud of your child for all the progress they've been making the past few months/years and then after watching a 5 minute video all you can think of is what you must be doing wrong. And then you feel guilty for comparing your child to another child, because you know you shouldn't. But still you wonder, what would my NT daughter be like? I know you cannot separate the autism from the person, and it is not the "quirks" I struggle with. I love my daughter's personality and her quirks are what make her her. It is her inability to regulate her emotions, or to verbally express certain things to us, or to manage her auditory sensitivity that I struggle with (and by "I", I mean "her"). Those are the parts of her autism that make our lives difficult. I'm tired of the meltdowns, the scratching and hitting, the crying and screaming. And not because it makes my life more challenging, but because I want to know how to help HER life be less challenging. I don't want to trade kids with anyone or make my kid "better". I want to see the smile on her face that I see on NT kids' faces. Not that they are happy all the time and not that she is never happy, but you can see on their faces that they are not struggling internally with anything. On the other hand, you can see on my daughter's face that she is fighting a big battle almost daily. And any good parent hates to see their kid struggle. Especially so young.

So even though I hate to admit it, yes, there are some days I wonder what my neurotypical daughter would be like. Not because I don't love my daughter, but because I DO.

Today I know that my son likes pizza

Today we went to my kids' favorite place in the entire world...the zoo. I'm not going to lie, it might be my favorite place too. If you know us or follow my blog, you know that both my son and daughter are on the autism spectrum. My daughter has had a fascination (aka obsession) with elephants since she was barely 3 years old. Last night, laying in bed, I could barely sleep because I knew today was such a big day for us. Not just because we were going to the zoo; we've been to the zoo lots of times. But this was our first trip since last summer and I knew today would be different. Different because so much has happened in our lives since then. None of the usual changes that a typical family would mention, but changes that have altered the way my children and I are able to communicate and engage with each other.

One year ago today, my daughter said "mommy" to me for the first time. She was 4. She had probably used the word 1,000 times before, but in reference to some movie she was reciting. That was the first time she had said it to ME, with purpose. 

My son regressed when he was 18 months old and lost all of his words. We were back to square one. Maybe even lower than that because before we could get him to talk we had to figure out WHY he had stopped talking. He started picking up a couple of words again around his 2nd birthday and then really took off around 2 1/2 years. Today, at age 3, he said "lion", "giraffe", "elephant", "gorilla", "look! Over there!", "outside", "this way!", "mommy", "zoo", "eat", "water". You name it, he said it. There is never a question about what his wants and needs are anymore. When we got home he said "pizza!" He wanted pizza for dinner. What a simple thing for a child to ask for and yet to me, in that moment, it was the most amazing thing in the world. The fact that he can now not only say the word "pizza" but that he knew what he wanted and thought to ask for it floors me. And while I hope I never take for granted moments like that, the truth is I probably will. But right now, on this day, it is still so fresh in my mind what it was like 1 year ago, 2 years ago, when neither of my kids could/would tell me what they wanted, or what they were thinking about, or what they enjoyed. But today I know that my daughter likes to run through the zoo taking in every animal exhibit as quickly as she can. And today I know that my son wants pizza.

k.