By Loreta Boskovic, Communication Specialist
I remember when my son Niko was diagnosed with autism by MECP. He was 3.5 years old, and his label consumed my thoughts. I was flooded with emotions of guilt, fear, and frustration. In particular, I remember the sense of relief I felt when he was deemed eligible for early intervention services; as if all-knowing specialists would swoop in and magically make everything all better. Experience quickly made me wiser, and I armed myself with information, talked to other moms, and eventually found my way to working for FACT Oregon.
Fast forward to today: Niko is nearly 16, and fully included in 10th grade. He relies on a letterboard to communicate, and around 20 school staff and students have been trained on how to use it. He is proudly autistic, and regularly blogs about disability rights. While he remains one of most impacted kids I know, his life is so beautifully ordinary. Girls, hanging with friends, going out to eat… These interests are universal, it seems, to most 10th grade boys. We’ve created a definition of what’s normal for our family, and embrace it as it leads us into the future.
If I could tell my 30-something self what to expect, here’s what I would write:
Dear younger me,
Right now, you’re consumed with questions. How did I miss the signs? Which therapy will help Niko the most? Where are we going to find the money to pay it? Will he ever be able to talk, write, have friends? Will I ever have my life back?
All of this seems important, but none of it matters. What matters is this: you will make amazing connections with other people who “get” it, and lose touch with those for whom you are just a little too intense. You’ll come across therapies that promise to fix his autism, but in fact they do little besides reinforce the misconceptions that he is “less than,” and that there is a small window of opportunity during which he has to make gains (or else). You’ll become active in advocacy, working with other families to change the health insurance system. You’ll be constantly tired but energized, and you won’t remember what it was like when things were “boring.”
You’ll stop taking things for granted, and start seeing the amazing gifts that your child is capable of – the ones that parents of neurotypical kids take for granted or worse, don’t get to experience. You’ll come to see that his challenges are only one small facet of his personality, and that without them, he wouldn’t be the loving, sensitive, beautiful person he will become. This insight will influence the way you parent his not-yet-born sister, and prepare you for things that challenge her too.
One day you’ll stumble across a communication method that will completely Change. His. Life. You’ll think that you had presumed his competence, when, in fact, you hadn’t. He’ll tell you this, and it will break your heart a little to think that you were *this* close to throwing in the towel. Don’t worry – he’ll tell you he loves you all the more for trying. He will take over the reins of planning for his future, whether you agree or not. You’ll be so incredibly proud of him!
You’ll meet adults with autism who have forged the path for him, and want to support him in doing the same. You’ll help him present at a conference, testify before the school board, and be interviewed by the local newspaper. Most of all, you’ll see that his journey started back when he was little, and everything you did helped pave the way for the incredible life he will experience.
What would you write to your younger you? Would you have done anything different? Feel free to share your thoughts and insights in the comments below.