June 9, 2015

Not Enough

Posted in AMT's Faves, My Take on Autism tagged , , , , , at 1:19 pm by autismmommytherapist

Spring 2015 123

A month or so ago I posted a piece on the Autism Speaks website for Mother’s Day entitled “Ten Things I’ve Learned as an Autism Mom.” The piece got a great response, with many people commenting that the fourth item on my list truly hit home. It reads as follows: “You will worry about what happens to them when you’re gone. This one you will never conquer.”

All I can say is, truth.

This next statement may surprise or anger some of my readers, but it’s my truth too. I wouldn’t change that my kids have autism. I believe at least in our case the reasons are genetic, since all of my kids have the disorder. I believe it’s a fundamental part of who they are. I’m not sure I have the right to change it.

But if I could somehow alter the severity of my eldest son’s disorder, I would.

My youngest son Zach, who is high-functioning, has mild challenges with sleep and anxiety, and moderate challenges with focus and impulsivity. I currently feel (and ask me this again down the road) that the gifts of his autism mitigate the challenges- his ability to read at three, that fact that he remembers everything, his insatiable curiosity, and his hyper-focus when fascinated by a subject. Zach has learned to embrace his differences, at present feels good about them. We focus on the positive aspects of his autism here, and so far, so good.

With Justin however, his type of autism precludes him from living an independent life. And I know I will go to my grave wishing things were different.

Over the past eleven years since Justin was diagnosed I’ve done a lot of soul-searching. When he first received the “a” label I was set on total “recovery” for him, wished for college, love, friends and a career for my boy. I wanted nothing less than an eradication of his disorder. When it quickly became clear this was not in the cards for us I shifted gears and strove for him to be at least independent, able to take care of himself after his father and I are gone.

It’s clear now that wish won’t be granted either.

Still, as time has passed I’ve come to see that Justin is happy as he is, is often the happiest person in our house. I don’t believe he wants the aforementioned things in his life- I am confident he does not know what they are. I’ve accepted he won’t have all of my pretty life options.

I’ve also accepted he doesn’t need them to be happy.

What I haven’t accepted is that the severity of his disability renders him unable to care for himself, which puts him at risk for up to forty years after his father and I are dead. This truth remains, and will always be, unacceptable to me.

In fact, it haunts me.

I shelve these thoughts most days for my sanity. The worries are always there, just looming below the surface, ready to rear their ugly heads when I least expect them. If someone were to hand me a pill that would lesson his symptoms and enable him to take care of himself one day, I’d be first in line at my pharmacy.

And I run fast.

I know some readers will think I’m horrible for wanted to change him in any way. But of my three wishes for him, namely that he spends his eighty years on earth happy, productive, and safe, the last wish trumps all.

I don’t believe even with the few medical advances that autism research has brought about that I’ll ever have the option of lessening his autism. The truth is if I want a modicum of happiness for myself, I’ll have to focus on what we have now- a happy, bright, loving child who at this moment in time is wondrously safe.

I will continue to have to learn to live with that much.

But some days, many days, it’s simply not enough.


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13 Comments »

  1. The poignancy of your truthfulness and your amazing ability to be the best Mom make this heartfelt post one that brings me to tears. I pray that your wishes are fulfilled xo

  2. NickyB. said,

    So so so difficult. I literally have to prevent myself from thinking about it too much while at the same time planning for his future.

  3. Its difficult to look down the road, especially those that wind. We’re not truly able to see what awaits us around the turns. Whatever provisions you may make now to ensure his care after your vigil is done, I’m sure will lessen your angst. For that, I pray the way will be shown to you.

    In the mean time, Justin provides more to the well-being of others than most. He gives those around him the opportunity to be better people.
    God Bless,
    -Alan

  4. MOM said,

    I understand that feeling all too well. I’d be running with you, even at my age! He is a happy boy who is very loved and knows it, and that is a gift for all of us. Love, Mom

  5. Chad said,

    Berlee–

    I know this has been always been a concern for you. I am happy for your gradual sense of peace. I cannot imagine what this must feel like, but your insight and heartfelt writing helps me understand the depth of your angst. Sending love and peace to you always.

  6. I feel like my son could go either way, but there is a good chance he will need some assistance to live on his own, if that ever happens. I think that is what he will want…I don’t know, though. It’s terribly hard.
    I KNOW you and your sons have every right to your own opinions and feelings, whether or not others might agree or disagree with you, autism speaks, etc.!!!

    • I could not agree with you more. I refuse to be censored. There were days on this journey all I had left were my feelings. Thanks for saying that!

  7. Natalie said,

    Thank you for sharing your story! This is my first day reading your blog and it’s been therapeutic (I also enjoy your writing style)! I’m a Northern Virginia mom (a transplant from the West Coast) with two boys. Finding a preschool in our area has been difficult. I too feel my three year old’s speech delay and difficulty in groups is genetic. My husband had speech therapy when he was younger and I see some of our son’s traits in him today. Saying and believing that it’s genetic has helped me cope because I know my husband overcame his challenges (Bachelors from Yale, Masters from Wharton, and plus).

    • Thank you for reading! Genetics helped me too. I hope your son makes a lot of progress, wishing you the best!


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