Saturday, September 24, 2016

Three Years from Her Diagnosis

Three years ago today Maggie was diagnosed with autism. 

That means that for half of her life we've known that she is on the spectrum. 

This morning, I started to think about what this particular anniversary means to me.  And what it means to Maggie. 

It means that three years ago we began piecing together the clues that would help us better understand each other.  It was the start of finding the help that we all needed so that she could grow and excel and be the person that she's meant to be, instead of trying to fit her into a box that she never would have been comfortable in, much less thrived in. 

It was also the beginning of realizing how big the unknown is in our lives. 

Before that September I thought that, one way or another, our lives wouldn't look all that different from any one else's in terms of overall life plans. 

Maggie has taught me many, many things, about love and communicating, and how unimportant words can actually be, but one that comes to mind rather frequently of late, is that she's taught me that I don't know what our lives will look like, day to day and week to week, much less year to year. 

While in some ways, our days are rather uniform, with the same cycle of appointments, in other ways those days can change in an instant.  There are months that have been so, so hard, where I've wondered if we'll ever see a way out of the hardness or if it will always be the same struggle.

And suddenly, just like, those times end and we'll have huge jumps forward, like we've seen lately, where the gains are rapid and everyone on Maggie's team is in awe of all she is and can do and we shoot text messages back and forth detailing those amazing moments throughout the day. 

In the first year after her diagnosis, I began to understand that often those two sorts of months went hand in hand.  A hard month, where everything felt off, and tears seemed to fall by the bucketful, often came before some major milestone.  Other times the hard times and the strides in communicating were simultaneous. 

Often times, over these last three years, people have asked me what I think Maggie will be like when she's an adult.  Will she live with us?  Will she live on her own?  What will we do?

And the answer that I always find myself saying is the same.

I have no idea.  I have no idea what she'll be doing a month from now, or a year from now, much less twenty years from now. 

I would not be surprised if she was a professor at MIT, or using her ample gifts in lock breaking to develop security systems for some company somewhere.  I would also not be surprised if she lives with us, while making the world a more beautiful place on a smaller scale. 

We just don't know. 

And that's probably the one thing that I've learned that I would share with parents and caregivers just started out on this journey if I could.  Just because your two year old is not verbal does not mean that your child will be nonverbal. 

In fact, very little of what we saw when Maggie was three has turned out to be accurate even three years in the future.  Those first tests that were done say things like "is more severely affected than most children with autism that are her age" and "in the lowest .5% of functioning for children her age on the spectrum." 

Those aren't things I've ever shared here, but I share them now, for those who are arriving at that place that I was three years ago, feeling afraid and alone and wondering what the future holds for them.

The truth is, that I don't know exactly what it holds. 

But I'm learning, little by little, taking things moment by moment and day by day.  I've learned by listening to those on the spectrum who have used their voices, often through writing, to tell the world about their experiences, which is a great benefit to everyone.  I've learned by listening to and watching Maggie.  And I've learned by throwing out the idea that communication has to look a certain way. 

This morning, using words and gestures, Maggie managed to explain to me that she wasn't feeling well, and then explained exactly what the problem was.  It didn't look like the conversation I would be having with a neurotypical six year old.  There were lots of gestures and single word phrases before I realized what she was trying to express.

I had to slow way down and really, really listen to what she was saying both with her words and with her hands.  It was a little bit scary because I couldn't understand right away, as I can only imagine it is for those on the other side of things, who are facing a moment when something hurts and that don't have the words to express what is going on to get help.  After about fifteen minutes she'd made the problem clear and I was able to help her. 

Slowing down, really listening, and taking life moment by moment.  Those are some of the gifts she's brought those who love her.

So here we are three years from the day when we first began to get answers.  I can't wait to see what the next three years hold.


  1. This encourages me a lot. Josie is still mostly nonverbal....every now and then she will say a single word. She just turned 4 yesterday and lately things have been on the buckets of tears side of things. I hope we have another breakthrough soon.

  2. One thing I know for sure is that God gave Maggie exactly the right mommy. I'm a mother to a daughter that was born with 22q11 deletion. She had major heart surgery at 5 days old, followed by several lengthy hospital stays for respiratory illness due to airway issues. She is only one, so we do not yet know what kind of developmental issues she will have as she grows, and her diagnosis also had such a wide range of potential unknowns. But reading your story of Maggie's struggles and triumphs encourages me. Wishing all the best to you and your beautiful daughter.


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