Dear Former Self – Here Are Some Autism and Life Things You Need to KNow

This is Day Four of the Ali Family #AutismTruths – April 4, 2017.

Dear Former Self,

Boy, are you in for a ride.

I could write a whole book to you, and maybe this will be just part one of several letters to you. But, let’s start with a few things:

1. You are a lot stronger then you think you are.
2. Everything begins and ends listening to your son and listening to your gut.
3. God never left you.

When D was diagnosed, there was no manual for you. There was no “Welcome to the Club” letter (do read this letter – Jess over at “Diary of a Mom” says better than I ever could.) There was D, there was baby A, there was your husband, buried in his residency and months behind you in coming to grips with everything. There were parents and in-laws who were eager to help and support, but not sure how.

There was fear. There was loss of faith. There was a lot of stumbling through the dark. There was a three-year-old boy who was relying on you to make the little and big decisions – a perfect, beautiful, precious kid who had yet to call you Mamma but knew you to be his Mamma in his heart.

I wish I could go back and make things different for D and you – for all of you. I wish I could give you the strength and determination that come more readily to me now. But time is funny, traveling in a relentless, linear line, not allowing for hindsight or do-overs. Part of me thinks it’s better this way – because if you knew some of the things that were looming in D’s future, it may not have gone down well.

Or maybe not.

Maybe knowing what is to come would fortify you to do your research ahead of time, become stronger as a parent advocate and listen to your gut when things felt wrong in the therapies or teaching methods that others said was good for D. Maybe knowing what is to come would make your voice louder, stronger in pursuing underlying medical answers for crippling the self-injury and other soul-punching behaviors D suffered through instead of listening to others who somberly said – well, that’s autism.

Who knows?

What I can tell you, what I can tell any family, parent and child new to this diagnosis is to stop and breathe. Grieve, steel yourself, cry, wallow – whatever you need to train for the marathon that is ahead of you. Find a safe place to lay your grief, troubles and worry – whether it is with your spouse, your mother, a friend or a therapist.

Listen to what your heart tells you, and listen to what your child tells you. Nonverbal or hyperverbal, you know your child, and you know how to listen to him. Let him guide you and be an active participant in the choices, decisions and plans being made for him. It’s his life, after all. And not all of it has to be scheduled and full of therapies. The “experts” will tell you that your biggest window of making progress in communication, language and social behaviors is before the age of six. But here’s a mantra I want you to know:

There is no timeline on progress.

Here’s another one – there can’t be enough said for unscheduled, unstructured time to be a kid, to be a parent and kid enjoying that special, fleeting time when you aren’t actively working to accomplish something or teach something – you are just being together. That autism diagnosis seems like a starter gun shooting, telling you to take your child and run, run, run.

But the path is never straight, it’s never smooth and it’s full of detours. Stop off at the rest areas and sit at the picnic tables from time to time. It’s as important as all the therapies, medical treatments, research, education and fight for supports.

Lastly, because I could go on and on, I want you – my former self – to know that God never left you. You will shut yourself off to Him at times. I know this. The prayers will seem hollow, and you’ll stop doing them for a time. And, the kind words of scripture and faith that your loved ones say to you will feel all wrong at times – God gives us only what we can bear. What does that mean, you’ll think. Because God has made my son autistic as something for me to bear? – well, that’s all wrong.

Because, you’ll think, – what about my child?

Listen – it’s ok.

God has room for all our doubts. What He decrees to be may never make sense to you. It still doesn’t all make sense to me now. But I’ve figured out it’s better for me to live with faith then without. So, when you feel lost or alone or angry at Him, He is still there. He has never left you.

He will never leave D.

Love,

Your present self.