Sunday, September 24, 2017

Fours Years Ago Today: A Diagnosis

Facebook tells me that four years ago today Maggie was diagnosed with autism.

I didn't go into the doctor's appointment, a few weeks prior to that day expecting anything of the sort.  We were there for tummy problems that just wouldn't go away.

The resident came in and spent forty five minutes with us while Maggie bounced off the walls and played with her stethoscope.  She said it was unbreakable until Maggie snapped part of it off and handed it to her.  She was awesome with Maggie.  And then she looked at me and said "I am one hundred percent certain that she is on the autism spectrum." and somehow I didn't fall out of my chair.

I didn't know anything about autism aside from stereotypes.  But the stereotypes told me that it was one of the scariest things that I could have imagined coming out of that doctor's mouth.

She gave me some papers and some numbers to call.

I went home and called the line to have her evaluated and went to the library the next day and checked out a stack of books and made a list of behaviors that the books told me were red flags.

When the woman doing the initial interview asked why I was concerned I opened my notebook and had an entire page of teeny tiny words printed in neat lines of things that she did that the books told me were not "normal" for a three year old.

I didn't give myself much time to be scared though.  Not really.    As with Tessie's central apnea, my response to stress seems to be throwing myself into learning everything I could, and reaching out to anyone who might be able to teach me how to help her.

A lot of people told me that everything was really the same and that nothing had changed in the days following the diagnosis, because she was the same happy, beautiful little girl.

And that she was the same little girl was true.

But our lives were also about to change drastically in ways that would have been scary to me then.  The neat little homeschool family picture that I'd had in my mind since before Sadie was born was about to disappear.

In the two years that followed I would sit in thousands of hours of therapy sessions and our carefree schedule would become much more structured.

I didn't know that what was coming next was going to better, because it was the best thing for us, the future that worked and benefited my children and family, instead of being some bright pretty photogenically blog-worthy dream that I had imagined.

On this anniversary of sorts I've been sitting her and looking back over my fears back then, and the reality that is our lives today and how different they are from one another.  This, what we have now, is better than anything I imagined.

And the question "what would I tell a family standing where we were four years ago, afraid and uncertain and wondering what would come next?" keeps popping up in my mind.  What would I have told myself if I could go back and write a letter to the me of 2013?

I would say that knowing is better than not knowing because once you know you can get her the help that she needs that will give her the tools to communicate and learn and grow.  Once you know you can learn how to communicate with her and it will be the best thing ever.

I would also tell myself that now is not tomorrow and is definitely not a year from now.  I have had so many parents tell me "I have a two year old who has non-verbal autism."

Having a two year old who doesn't speak, with or without autism, doesn't mean you're going to have a child who can't speak in a year, or three years, or five years.  Having a four year old who doesn't have any meaningful language doesn't really mean that either.

And that is probably one of the most important things that having this amazing kid has taught me.

Especially when our kid is little, we only know what our kid is like right now.  We don't know what next week is going to be like or next year.  And we definitely don't know what three years from now holds.  You don't know if you're kid is going to require care for life, or if they'll be a professor at MIT or if they fall somewhere in between.  At least not when they're still tiny.

Even now, as a mom to an amazing seven year old, I have no idea what comes next.  Will she end up testing security systems for the government or some corporation (because let's face it, she has major natural talent in that area)?  Or will we still be watching Bubble Guppies on TV and eating popcorn on Family Movie Night in twenty years?  Either way, what matters the most is that I get to be the mom of this amazing, and often times surprising kid.

My favorite advice though, isn't really my own.  It was passed on to me by a mom who had a teenager on the spectrum.  She said that the best thing that I could do is go out and read the blogs and books and articles that were written by people on the spectrum.  There's a lot of scary stuff out there, she told me.  But the people who really know what it's like for your kid are other people who've been there.

And to this day I am grateful that I didn't get sucked into the vortex of pseudoscience and imagined causes and cures (at least I didn't get sucked too far in).  I'm glad I found voices that asked me to think about how I would feel if my mom talked about me the way some parents talk about their children on the spectrum.

Because a two year old who isn't verbal may someday be able to read the gallons of ink their parents have spilled talking about their neurology as if it's a fate worse than terminal cancer.

So here we are.  Four years out from those first tests when we began to learn more about our little mermaid and truly began to understand her.  Last week I got to sit with her while she did her work for the first time in two years.

There was a section of work called "irregular plural nouns" and I watched as she said "cactus, cacti, goose, geese, and child, children."  Then she glanced over at me and grinned hugely.  She is apparently far more articulate at school than at home and I had no idea how far her language had come, because at home we talk about... mermaids.  All day, every day.   I know that she has a very expansive vocabulary about all things ocean related.

I told the person working with her that I heard more words in the hour I was there than I had in the previous year and she was shocked because Maggie talks so much at school, but Maggie, Maggie was smiling.  As we walked to the car I said "I think you've been holding out on me." and there was more smiling.  And in the following days I've heard far more words and sentences than I had before.  She is so smart.

Where will we be next year?  I have no idea.

But I can't wait to find out.


  1. I needed to read this. My 18 year old daughter was diagnosed as being on the spectrum a few months ago. As the neuropsychologist said, the signs have always been there, but people blew them off because she was a girl and doctors are learning more and more about autism in females. Even when her anxiety issues turned into an eating disorder that hospitalized her more than once, so many didn't understand. Finally we have an answer about what is wrong. With the appropriate therapy she is doing better but still has many issues. I need to keep remembering that today is not tomorrow. I know that at her age the changes won't be as breathtaking as 3 to 7 years old, but still - I can't assume.

    1. I know I've read that so often girls are better at hiding the social differences too and blending in a little bit more than boys, especially because the "stereotypical" interests that boys have are what doctors often think of when they think of autism. It's awesome that she's getting help now though and figuring all this out. Praying for you guys as you navigate this time. Getting a diagnosis is so good but I know it can also be really tough to even when it's expected!


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