No Certain Future…But There is Hope

December 4, 2014

The early years before and after an autism diagnosis are busy.

Many kids nowadays – our son Hayes included – are diagnosed before age 3. Before you hear the life-changing word you may have already expected, there are loads of tests and paperwork. Hearing test. Blood tests. Written assessments from parents and daycare providers. Not to mention hours and hours of research.

After you get the diagnosis, another avalanche begins. Doctor appointments – so many doctor appointments. Genetics testing. Applying for state aid. Preschool. Therapies – a lot of therapies. Trying various medications. Continued research.

So much emphasis – absolutely appropriately – is placed on the front end of this journey. We all know how beneficial early intervention is in helping children with autism achieve their potential.

It’s an all-consuming gauntlet. A full-time job.

Then you get to kindergarten and the elementary school train begins down the track. And the therapies continue and so do the doctor appointments and pharmaceutical trial and error.

Naturally, parents like us don’t get a chance to think too deeply about the distant future. Only very recently have we been able to breathe a bit and contemplate the road ahead, imagining social scenarios and professions and living situations.

Hayes is high functioning and newly 7. He is a bright and energetic first grader, in a ‘typical’ classroom. He has mostly good days.

We’ve been told to have every hope and expectation that he will go to college and live in any setting a typical young person would be able to live in. That may or may not end up being what happens, but those are among the long-term goals we are working towards today. There is so much yet to be revealed about how he will develop over the next 11 or so years.

Down the road, if Hayes can benefit from a setting like First Place, living alongside other individuals on the spectrum, that is what we will wholeheartedly help him get access to. And we will be very grateful that a high-quality, secure option like this is available to enable independence and enrich his life.

So, while we are not yet absorbed with contemplating living situations, as the overanalyzing, fretful mother, I have thought extensively about Hayes’ future relationships. Will he have good friends? Will he have healthy romantic relationships? Will he be able to genuinely understand someone else’s inner life and be able to articulate his own? Will he be overly trusting or just cautious enough?

Life is not just food and a roof over your head. It’s all about the relationships.

And, truly, that’s what a project like First Place is all about – creating a community of people who will have fun, look after each other and live lives of meaning. It’s incredibly reassuring to us to know that communities like this are being developed now. They add to the options that Hayes can one day contemplate.

Home, sweet, home. We look forward to seeing him settled into one – wherever it may be.

Nikki Riordan’s blog, Promisingly Ominous, is partially devoted to experiences with a child on the autism spectrum. Hayes is not her son’s real name because it’s not yet his informed choice to be discussed in her writing. 

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