What I Wish the World knew about Autism Awareness Month

We have been on the autism journey for just over four years. I remember it like it was yesterday, sitting at the appointment watching the doctor run a series of predictable tests, biting my tongue and holding myself back from blurting out all I felt I needed to say.

I watched her hand him toy after toy trying to see if he knew what to do with it (like give the toy bottle to the baby doll). And toy after toy he would throw it, or bite it, or break it.

Needless to say I knew the answer she was going to give us before she said a word, as my husband and I sat in that office lined with toys. And yet I couldn’t bring myself to accept that autism diagnosis.

And not because I thought it was the end of the world, and not even because I thought that wasn’t the right diagnosis, but because it all seemed too unknown.

‘Your son has autism, here is a list of ABA therapies in town.’ And that was literally it.

I wanted a crystal ball, I wanted to hear that my son had autism but here is how it all turns out, just try this magic pill and he will be just fine.

I even would have settled for hearing that things wouldn’t turn out great. I just wanted to know. But then that is one of the hardest parts of being an autism parent, the unknown.

The Unknown

Everyone is so different, after all autism is a spectrum.

I am a planner, the unknown is one of the hardest things for me.

In the next few years that followed I kept being told how everything was going to be fine by everyone around me. You know the comments- ‘my kid didn’t talk at age 3 either but they are fine now’, ‘lots of kids do this or that, its normal’, ‘he doesn’t look autistic’.

I sat through preschool concerts watching every child sing and do the motions while mine sat in a corner covering his ears.

I heard my friend’s kids start speaking, carrying on conversations, while my child had less then a handful of words. The list could go on. But I kept watching.

I Kept Waiting

And we were not passive, we had started Josh in ABA the day after his diagnosis, we had an IEP in place at school, he was doing every therapy available from speech to occupational therapy. But somehow it felt like we were stuck watching time just pass as Josh stood frozen in time.

Then a year ago, on the eve of his 6th birthday which also happens to be world autism day, my husband and I sat and talked.

For the first time we were both honest about our fears.

An Honest Conversation

We talked about the future, we talked about what would happen when he is an adult, where would he live, what if he still can’t speak?

What if he never is able to hold a job? What about expenses?

All the things we wished for and feared he may never have.

It was earth shattering. It was painful. It was raw. It was honest.

And for the first time we fully accepted that our son was autistic.

But like any story, it takes hitting rock bottom to create a realistic path forward. Suddenly success had a new measure.

Our eyes shifted from playdates, recreational sports, and community activities to potty training, communication, safety and basic daily functioning.

We let go of traditional public school and in its place found a wonderful full time ABA center (literally one of the hardest parenting decisions of my life, and the best one we ever made).

A World for Josh

We stopped trying to make Josh fit into our world and we as a family started creating a world that fit Josh.

A year to the day later, on the eve of his 7th birthday and world autism day, I am sitting here reflecting.

In some ways nothing has changed. Josh still seems frozen in time.

He still watches the same little kid shows, he still struggles to communicate, he still has high behaviors, he still struggles with everyday things, he still has high behaviors and safety risks.

He has still not been to a birthday party, he still has never had a playdate, he has still never participated in a childhood sport, he still has many places he just cannot go or fit into in the community. But in other ways so much has changed.

He is Happy

I have watched him accomplish tasks as simple as signing ‘I need help’, finally getting potty trained during the daytime, being able to sit and just be for short periods of time.

They are small, and compared to his peers they are not even close to on target. But Josh is on his own path and he is making progress in his own special way.

And he is happy, he is the most honest and content child I know.

We as a family have a very restructured life, but we are happy.

Now this doesn’t mean I don’t still worry, cry in a locked bathroom at night because my fears for the future get the better of me, sit up at midnight researching every supplement, diet change or treatment to be sure I am not missing anything.

What Autism is

For Josh the sky is the limit, he can and will accomplish unbelievable things.

He is an amazing kid, and has my whole heart. But being able to accept where he is, while helping him work to keep making strides, has been life changing.

Autism means different things for everyone affected. But for us autism is hard, it is painful, it is a loss of a normal childhood, it is a daily struggle. And that is ok.

That may not be what autism always means for us, things change, progress is made. But if there is one piece of advice I could give any new parent on this journey it is that autism is whatever it means to you and your loved one, and that is ok.

To me that is autism acceptance, accepting that it means different things to different people and that on both ends of the spectrum of acceptance it is ok and it is valid.

Written by, Kim Ndahayo

My name is Kim and I am the mom to 5 amazing boys, the youngest of which is Josh. Josh is funny, loving, sweet and he is autistic. We live in the beautiful state of Colorado. In many ways we are an average family. But autism effects every aspect of our lives in literally every way. We started Josh’s journey a year ago to share our journey, the funny and the sad, but the real life of raising a son with severe autism. You can follow our journey on my blog, Josh’s Journey, or on Facebook.

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