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An autism diagnosis changes not only the world of the person with autism but the world of those around them. Overnight, you become an autism mom. The news can, at first, be paralyzing. Then, often comes a period of intense research – reading everything you can get your hands on, waking up in the middle of the night to google things.
When you begin to put some interventions in place, you can regain some equilibrium and remind yourself that you – and your family – deserve to move forward. The views may be a bit different, but there is still a future to plan for – and even embrace.
What follows are some of the truths we encountered in our family as we have emerged into life beyond the diagnosis.
Our hands are often full…
Though we only have two boys, we often tell people that autism is our third child – it certainly drains our time, energy, and resources like a third child would have.
It feels like we have three kids…
…when we try to travel anywhere- to the grocery store or flying to see the cousins.
…when we plan anything that involves an appointment- dentist, doctor, haircut.
…when we consider what items to put in our home – and where. (I covet some gorgeous glass vases, but I know that I would not enjoy needing to “babysit” my decor.)
Yet our ears are empty…
In other circumstances, it is more as if we have an only child – a single non-adult voice in our home, choosing pizza toppings, voting on travel destinations, and making requests for the next family meal.
It feels like we have an only child…
…when we decide what to have for dinner.
…when we plan special outings and trips for our older son – allowing Mr. Diggy to stay put.
…when B is at a sleepover or camp and the house is eerily quiet.
There is constant motion…
He is a child in seemingly constant motion – indoors, outdoors, jumping, running, swimming, squirming, cuddling and bouncing. We have installed indoor and outdoor swings, indoor and outdoor trampolines, and any number of other items to attempt to satiate his sensory appetite.
And unbelievable stillness…
This motion is punctuated by somewhat unexplainable pauses, usually outside (or inside where the sun passes through a window at the exact right angle). It is at those moments where he embodies the sentiments shared in an Apple commercial highlighting autism awareness: it seems that he sees the wind and hears the flowers.
What we think we know…
It is doubtful that we will ever hear the quintessential teen “I hate you” from Mr. Diggy. But we are more than grateful for the moments of pure, unfiltered adoration and love that we receive – all communicated nonverbally.
We don’t often hear a determined “no” in our home – or any other backtalk or sass. But we do get to witness the power of “yes” when we indulge Mr. Diggy’s longing, (nonverbal) requests, for swimming, tickling – or his favorite corn chips.
We have difficulty explaining “goodbye” to the little man – when we leave (which is rare), I’m sure it must feel like we just disappear. There is, however, little else that compares to the joy of his “hello” when we reunite.
And what we can only guess…
We can only begin to imagine what lies behind his unfiltered emotions – pure joy, raw pain, chin-quivering sadness. His eyebrows seem to speak a thousand words – we use them to gauge what we can about what is locked inside him.
What is simpler in our lives…
His needs are often simple – water and food, an unadorned, safe place to sleep. His interests are also often basic – water of any size – from a puddle to the Pacific, a leaf, branch or twig, a surface on which to tap and create his own brand of music.
And what is more complicated…
Something that is quite challenging is sitting and waiting for anything that is not directly for him such as the post office or the grocery store is nearly impossible. Even waiting for something that IS for him – his doctor appointment, haircut, or special needs surfing event – is difficult.
It is easy to feel lonely…
Events and activities that are eagerly anticipated by many others – (including by me before I was an autism mom) – are often something we avoid. So we skip the barbecue, the ice cream social, the birthday party because disruption to the routine so often backfires. We also lack the flexibility to stay up late at night here or there, or to eat out in most restaurants – these exceptions to routine are too hard to explain. The potential fallout outweighs any potential reward.
But not alone…
Since Mr. Diggy was diagnosed more than eight years ago, we have had a constant parade of people in our house – assessing, evaluating, monitoring, teaching, training, observing, and working with him. Our home is their office. In many ways, our home feels very public.
Finding balance…
For Mr. Diggy, free time is not a good thing. Too much unstructured time can easily devolve into a series of stims that eventually fuel a self-propelled meltdown. So we work hard to fill his life with active pursuits that are not too socially overwhelming. This means we skip the carnival and do the hike. It means we opt out of Trick or Treating but opt into an extra session of themed occupational therapy activities. It means we host a barbecue and let Mr. Diggy swim while we cook and eat.
Autism Mom: Piece of Mind/Peace of Mind
There are a lot of ways to live in an autism family. These are my autism mom perspectives. As your family moves beyond your diagnosis, you need to do what works for you. At first, an autism diagnosis can seem like a band or orchestra entirely out of tune, with dozens of instruments competing for the spotlight. Each project, question, demand, therapy – so many things to manage simultaneously. When you make your autistic loved one the soloist – but not the conductor – you can begin to move toward a place of harmony.
Looking for more ideas to find and maintain your quality of life post-diagnosis? Download out my free Self-Care Survival Guide here.
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Related Posts:
A New Autism Diagnosis: 3 Ways of Accessing Services
The Autism Sibling: Autism Mom Perspectives
