Recovering from Recovery: Autism Now (#346)

How much does an autism parent have to sacrifice for the sake of their autistic child? How much can an autism parent sacrifice? And what is the goal: Recovery? Cure? Total mainstreaming in an age-appropriate classroom? College graduation? Marriage? Grandchildren?
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Over nine years of raising Charlie and living in Autismland, my answer of what my “goal” for Charlie is the purposefully vague “the good life.” I will here admit that I am something of a recovered “recover my child from autism” mother. It was years ago that I, like many autism parents, read the “I recovered my child from autism” books, Catherine Maurice’s Let Me Hear Your Voice:A Family Triumph Over Autism and Karyn Seroussi’s Unraveling the Mystery of Autism and Pervasive Developmental Disorder : A Mother’s Story of Research & Recovery.

And, like many autism parents, I have spent too much time castigating myself for “what I did not do.” We did the intensive ABA, complete GFCF diet, selective biomedical treatments (anti-fungal; some supplements; not chelation) and the hours of all kinds of therapies etc., etc., etc.. And Charlie, aged 5, did not go to kindergarten; Charlie stayed in a self-contained autism classroom. And Charlie, aged 9, is just learning to read and struggles to put more than three words together into a sentence and sits in the barber’s chair for one close buzzcut.

Like too many autism parents, I have equated “not recovering Charlie from autism” as a sign of my failure to do enough to help him.

And yet—-the notion of “recovery from autism” always rang a bit false and flat in my ears until it simply sounded—as autism mother Cammie McGovern wrote today in Autism’s Parent Trap—like some mythological concept. Like some autism fiction and here before me, pulling on his pajamas with shower water dripping off his legs (“This is how you dry off, Cholly”; “Dwwy offf! Towel on!”) or being gently reminded not to say “I want ginger” when he really wants to eat more frozen peas and carrots, here before me is my lovely boy, who needs my attention and who needs to be taught where he is so that he can move on and have that “good life.”

“We seek progress not perfection,” as I said at a meeting this morning with Charlie’s soon-to-be-new-teacher and case manager. Jim and I wake up every day with one goal in mind, to maximize our and others’ efforts to help Charlie learn as much as he can, and to know that just trying—just showing us that he is trying—is more than enough.


I suppose you could say, I had to recover from the notion of “recovery from autism.”

Not so much because I had some desperate desire to have grandchildren sitting on my knee or fantasies of watching Charlie (all 6 feet plus of him) marching in his cap and gown to get a diploma from X Prestigious University.

From the time of Charlie’s autism diagnosis on July 22, 1999, Jim and I have been constantly hashing and rehashing every moment of Charlie’s baby- and toddler-hood, especially his first twelve months. “He didn’t have joint attention.” “That pediatrician said he had a ‘minor gross motor delay’ at ten months.” “Remember the weird way he scooted, one leg tucked under and using his hands to propel himself?” “That was the same leg the doctors who delivered him said was tucked under the other, ‘like a pretzel.'” Jim and I replay the mental memory videotape of Charlie’s First 24 Months endlessly and each time the analysis is the same: He was born different. He was always as he is.

Autistic. Charlie.

Living in Autismland has come to mean not an endless recovery effort, but simply endless efforts to teach Charlie, and endless good times with our sweet, big-hearted boy.

A boy who paused when his old babysitter spotted us and (leaving the dog that Charlie is both afraid of and fascinated with in the backyard), walked out and smiled softly at Charlie.

The babysitter showed me a photo she had saved on her cell phone. She is smiling and Charlie is leaning his head into her. The babysitter mentioned how she sometimes sees the kids in the neighborhood who used to see her sitting with Charlie on our old front porch, and how they ask about him, and how she shows them the photo on her phone.

Then Charlie smiled and ran across the grass to give her an armless hug.

Charlie likes people and interacts “in his way”; Charlie can talk; Charlie joys to travel to New York City or Philadelphia and see the sights and the rush and flow of traffic and people. Charlie will never blend into any crowd. Charlie will always be Charlie. Charlie will always be autistic.

I still go to bed and wake up wondering, what else can I do to help Charlie?. Tomorrow at 6am I am sure I will at least think fleetingly of Stuart Chaifetz, an autism father who is on a weeklong hunger strike, with the aim of getting the state of New Jersey to transfer $2 million budgeted for recreational hunting programs from the New Jersey Division of Fish and Wildlife into New Jersey’s Department of Education’s special education and autism grants.

Talk about “ultimate sacrifice.”

And the little voice at the back of my mind whispers, did you do enough for Charlie today? did you try to move Heaven and Earth? DID YOU?.

In Autismland, I would say that the extreme has a way of metamorphosing into the ordinary. It is true, I have never considered hunger-striking (I have to say, I have to be up and about and vigorous to take care of Charlie) but Jim and I have made what might be deemed (minor) sacrifices to do our best by Charlie, from giving up tenured employment and career opportunities to moving for the sake of his education.

In Autismland, what might be deemed a “sacrifice” (bodily health, one’s living arrangements) falls by the wayside. Nothing matters more than doing the best by one’s child.

Autism is Now.

Charlie is here, here and now, and needs our everything every day. It is not that we need to “cure autism now” but that we need to “teach autistic kids NOW” to give them the best chances today, tomorrow, and when we are not around to know what is going on.

We need to start thinking about Autism Tomorrow.

Now.

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Comments
13 Responses to “Recovering from Recovery: Autism Now (#346)”
  1. StyleyGeek says:

    I am constantly amazed at the wonderful sacrifices you make to put Charlie’s well-being first.

    I hope you never worry that you haven’t done enough.

  2. Kristina,
    You are an amazing parent who has done more than many parents I know could ever dream of. The parents seeking “cure” are missing the now.

    Ironic that you wrote this today, as I have been feeling some similar things as you. Leaving therapy with Sam yesterday “the mom” that does everything to cure her son from autism (and has reported to me as of late that he will be cured and symptom free completely by the end of this year) commented on Sam’s feeding program again.

    She knows we have tried twice in the last year to do GFCF, with no known changes at all (so we aren’t doing it but still eating healthy besides). She saw me walking out of a speech session where we are doing a feeding program (since Sam has so many feeding issues) and had to throw in “so I suppose you have given up on GFCF, remember how well it worked for us, blah, blah, blah?” She also is the one that thinks she knows every possible tool to cure autism. The sucky part is, that Sam was more higher functioning than her son a year ago, and now her son is higher than Sam.

    I just play dumb with her. But I know the truth and what Brent and I do for Sam and what we are willing or not willing to subject Sam too.

    You are willing to to do what is best for Charlie, it may not always be best for you, but you make it very clear that you focus on what is best for him. That my dear, is more important than anything else you will ever do for him. Your eyes are focused on now, on Charlie, on his journey, not the end of his journey. You are taking the path less traveled, and for that, that will make all the differene.

  3. Sharon Faulk says:

    What a wonderful post. As parents of autistics, we are looked at more closely. What did we do to have these children? What are we doing to “fix” them?

    We are parents. And even parents of NT children struggle with knowing or hoping that they are doing their best.

    I constantly struggle with making the decisions. As a single parent, I have no one to discuss this with (which sometimes is a blessing) but I constantly am second-guessing myself. Maybe I should be doing X or Y?

    Sometimes it makes me crazy with all the decisions. So I am trying to listen to my gut and my heart. And love my boys with everything I have.

    Thanks!

  4. Eli's mom says:

    Great post as always, Kristina. We didn’t try all the interventions you spoke of, just speech and OT for Eli at school. I think a lot of serenity and peace comes from knowing that we ARE doing all we can.
    Don’t EVER have regrets or doubts. You know what is best for Charlie and he knows that you love him more than life itself. I see his joyous face, happy smile, and adventurous spirit shining in each and every photo you post.
    You got it right. Exactly right.

  5. Funny how it seems so much more “sensible” to question what the “gut or heart” says—–though they are often very right in matters concerning Charlie.

    Friends, you are too kind—-

  6. kyra says:

    wonderful post, kristina. you and jim are such devoted and loving and respectful parents. charlie basks in this every day of his sweet life. i applaud you. yes. let’s think of autism today AND tomorrow.

  7. vincent says:

    Katrina,

    In these days of constant change and calamitous uncertainty for families like ours, is there any parent who does not experience(at some point) the depression and bewilderment of crippling fear, which, like a nagging hound of hell, pursues our every decision we make(on behalf of our child/children)?
    Kristina, your words represent me and my wife’s attempts to move heaven and hell forouronlychild.
    -Amid our blooming careers, we paused to just have one child. Our only child-
    , and almost, at first, without being aware of the change, autism transformed the sunrise of our expectations into a sunset of highs & lows.
    As I write this now, Hamlet’s words, “To be or not to be,” falls on my trembling lips. Emerson wrote, “He has not learned the lesson of life who does not every day surmount a fear.”
    But as the days(years)with our son have forced me and wife to muster what strength and courage we have to withstand howling winds of pain and jostling storms of adversity. I guess, my faith in humankind transforms my sometime despair into a reviving hope.

    Fear knocked at the door.
    Faith answered.
    There was no one there.

    Katrina, you and your family are not alone. Never surrender. Keep the faith. Also, keep blogging 🙂

    Best Regards!

  8. squaregirl says:

    A lovely post! I believe my greatest goal is to pull out and maximize each one of our children’s potential.

  9. Dick Dalton says:

    Great Post!

    I was fairly quick out of the blocks with this line of thinking, although I did enjoy Catherine Maurice’s book, putting aside the insistence on her children being cured. Most families don’t have the the considerable Manhatten resources she had to bring to bear on her situation.

    Jane is just now beginning to come around to this point of advocating for who Thomas is, and whatever it is he decides to become someday.

    This is a real common journey for parents, I think, where they learn to let go just a little and enjoy what is there in front of them.

    dick

  10. Julia says:

    I read Catherine Maurice’s book. I’d resisted it for awhile (recommended to my mother-in-law, she then told me), but read it, and it just didn’t seem to fit us.

    I’ve tried GFCF diet with Sam; when we’ve tried to give him gluten again, he’ll refuse something with gluten the third or fourth time around, so I think it may be bothering him somehow, and I’m trying to come up with more gluten-free stuff for him. Casein I haven’t tried again yet, because it makes me a little futzy-headed and I haven’t felt “this would be a good week to push it” yet. Although maybe next week would….

    Accepting Sam has helped me in accepting myself; I am close to the spectrum, and suspect I have Asperger’s (but I have no formal diagnosis and have no reason to seek one at this time). And I love all my children very much, but there are more times I feel that I like Sam better, because I’ve had more time to get to know who he is, and see more similarities between him and myself. (This week, his younger brother is completely baffling to me, actually, and the younger brother is probably the closest to “normal” of anyone in the family.)

    It’s so much nicer when you can sit back and enjoy your child and not try to change too much about him, but help him to become who he’s meant to be.

  11. vincent says:

    In my humble opinion, parenting an aut-child becomes a struggle within yourself. Part of you wants to say “no way”, and yet anoher part says, “I can do it.” A well trained attitude is very important. Without it, there can be no improvements. When I think “this is my limit,” and I quit, I will never go beyond that point.
    I’m training myself to seek a broader battlefield and not be limited by feelings of competition with other parents. I’m finding this experience w/my son is a continuous battle within. Sometimes, the self is both the closest friend and the toughest enemy. It is very difficult to appease the enemy or to be friends with it. The self is the hardest partner to control. How could I even think about controlling my son when I cannot yet control myself? Because we as parents/care givers are faced with this constant challenge, we must try not to seek out autism as an enemy. Training my attitude towards my aut-son is like a constant question-and-answer session within myself. Humbling myself by bowing to the front of my son’s condition and to other parents faced with similar situations directs my attitude training towards myself.
    A Zen priest once told me, “Even a small stone thrown in a river sinks. However, with a big enough boat, one can carry even a big stone across the river.”
    The same is true of myself. I am only human. I am not a God. But I can accomplish great things using outside resources and energies, which are to me as a boat is to a stone.

    Katrina, I’m very proud of you! Thanks for being such a great outside energy for parents like myself 🙂

  12. Ashley says:

    I couldn’t agree more with these comments. I have a child that reached recovery status. I don’t worry about him less, and who knows about the future. Cure? Who cares. Recovery? Whatever. The brass ring is maximizing the potential of our children. Making them happy, opening up the world as wide as we can for them should be the goal. Do I have to like Autism? Yes and no. I love those parts that make Leo who he is. I don’t like the parts that cause chaos, fear, and anxiety, the parts that kept him from doing the things he wanted to do.

    We all have to remember that in AutismLand, as Kristina says, the road is different for everyone. Who is to judge when a parent uses unreachable goals, denial, or blame, to get where they need to go on their journey?

    What unites us all is the love we have for our children. I see so much fragmented effort in our world of Autism. It makes me so sad. Only because of kids having different functioning levels, because of the different journeys parents take. Ashley

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