Entering the Spectrum

My beautiful son Keegan, who happens to have autism, just celebrated his fourteenth birthday.  I promised I would try not to wax nostalgic, that I would just, for once, let it be a birthday, and not let it be about fourteen years of struggles and tears and goal-setting and victories, large and small. I promised that I wouldn’t get all lecture-y on social media about early intervention and advocacy and so on. But here’s the deal. It turns out I must have some sort of compulsion about this stuff. Keegan might not be the typical kiddo with autism. He is more high functioning than a lot of others on the spectrum. And he is one amazing human being! But  you can’t look at someone and know what is going in his brain. You can’t know the challenge of learning all the nuances of behavior and interaction that have come relatively naturally to you–knowing how long to let your eyes linger in a conversation, knowing how much touch is too much touch with a friend, and why is it different with this friend and that friend, being constantly anxious that you will not know how to behave or engage, wanting desperately to have a connection with someone, but fearing that an interaction will go badly and everything will be ruined. Keegan juggles those thoughts and worries every day.

When he was diagnosed ten years ago, he was placed at the moderate level, NOT mild. This was AFTER three solid years of intense intervention. I did not wait for a diagnosis. I acted on my gut, and got him help, when he was eighteen months old. I read everything in print, I talked to other parents, I dedicated a room in our house to Keegan’s sensory needs. I recall one day, when he was three years old, I realized, with a broken heart, that he might NEVER come out of this world where he lived: a wordless world of staring at the ceiling fan, lining up hot wheels, grunting and spinning in circles, banging his head, licking everything in sight, refusing to be touched. That isn’t the Keegan most of our friends know, because they never met that Keegan.

So on that day of realization, I made a choice. If he wouldn’t come out, then I would go in and join him. That’s the day my relationship with my son changed. It’s also the day that my relationship with autism changed. And it was still one year prior to his diagnosis. It was in the midst of doctors telling me “Give it time, it’s a phase, he is just shy, try different discipline, he is too young to test, some kids develop later than others, let’s watch him for another six months….blah, blah, blah.”

You know your child. You know him because he has little pieces of you inside him. I saw myself in my little boy’s eyes, and I saw him quietly pleading for me to come inside and be with him. So I did. I slowly, but firmly, created a space in his world, a little each day, until eventually it was big enough to hold us both. It wasn’t easy. He got angry at me. He pushed back at me. HARD. But I trusted what I saw in his eyes, and I thank God for opening my heart enough to hear what my son was really saying to me. I believed that even though every behavior he exhibited screamed “Leave me alone,” and “Don’t touch me,” that it wasn’t what he truly wanted or needed.He was writing my name on the wall between us, and it was an invitation I couldn’t ignore.

If you think something feels wrong, get it checked out. If you don’t like the answer, ask someone else. And someone else. Read every book available until you find the one that makes sense for you and your child. If you are resisting a diagnosis, know this: the word “autism” does not have to define your child. That is your choice. Use it as a tool to get the help you need. But those six months the doctors are telling you to wait, are the most precious f-ing six months in the world to a developing child, especially one on the autism spectrum.

So July 16 might never be “just a birthday” to me. And I will probably never stop lecturing about early intervention. But I have zero doubt that if I had listened to what the professionals were telling me, everyone would have met the aforementioned Keegan, instead of the confident and capable young man he is becoming.

 

In Truth and Love,

Alinda