The road to recovery

Sometimes, in talking to people, their eyes glaze over, and I can almost hear them thinking, “Is she on to that autism thing again?”

I confess, I talk about it a lot. I talk about it to clients, many of whom face autism in their own children. I talk about it to colleagues while we’re waiting for hearings. I talk about it to my sisters when we share each others’ weeks, and it seems my tales of triumph and woe go on and on. I write about it here, and I’m grateful many of you understand and let me know.

For all I lecture about making your life about other achievements besides the raising of an autistic child, the fact remains, a family member with autism is all-encompassing. The autistic life flavors every minute of every day. We must remember to give notice to Captain Oblivious that he has a special program at school so the meltdown at a change in routine doesn’t occur. We push and push to get verbal responses out of Little Miss to every question, force her to stay engaged. We stay on top of Ditto Boy’s meds and watch all three for regression, new behaviors, bad behaviors, falling grades, violent outbursts, interaction… anything. All day. Every day. We go to work and wave them off on the bus, but we wait for the phone to ring.

Someone close to me is a recovering alcoholic, sober now for some time, and her continual vigilance on the issue of alcohol was getting on my nerves. At the holidays, she couldn’t come to the house if anyone was having a drink. She wouldn’t go out for lunch if there was a bar. She comes late for visits or leaves early because she has a meeting, and she’s always thinking about the process of recovery.

About a week ago, it dawned on me: we’re the same.

Both our lives are consumed with the awareness of continual threat; for her, that she’ll lose control of the alcohol again, for me, that something will go wrong with the children, something we should have been able to control. Alcoholics Anonymous has twelve steps to recovery; Autism Anonymous has…well. Hundreds. Most of which probably won’t work for every child, because of the diversity of symptoms and causes.

But the successful approach is the same: one day at a time, with constant attention to learning about your issues, and taking the best possible care of yourself, so you can help those who need your help. And my slightly modified version of the Serenity prayer:

God grant me the serenity to accept the child I have been given, so I can teach him what he needs to survive in our world; courage to work for change in the world so that she can be accepted; and the wisdom to know whether the child needs to be changed, or the world does.

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16 thoughts on “The road to recovery

  1. Could you write more, please??? I LOVE, LOVE, LOVE your perspective on things. If feel like you are my north star sometimes….

    I too dread the phone ringing – I have learned to love the days when C is at school and the phone doesn’t ring at all – because then I don’t have to experience that adrenaline rush as I’m trying desperately to FIND the phone and look at caller ID before I breathe a sigh of relief that it’s not the school.

    I’ve been working on a chaper (and subsequently a post) about being “on” all the time and how hard that is on the body and mind. Even when C is asleep I am listening to the monitor with one ear. You’ve given me an extra insightful push into finishing that. As usual, THANKS!

    Darcy

  2. Between the hours of 8:30 am ~ 12:30 the house is empy except me. It seems to be the only time I dont have to physically deal with autism. Yet I am on the internet talking about autism with others. So yes I also find myself speaking eating and breathing alot of autism in my life!

  3. FANTASTIC POST!!! What mature insights – I wish I had an ounce of that today myself. Thank you!

  4. beautiful. one of my employees has been battling schools, social services and doctors for 12 years – just trying to get a square deal for his autistic son. i appreciate the relentless battle – but your words capture it beautifully.

    and i spotted a molecule of myself in there – when i’m obsessive with the weight loss, i am really not a pleasant lunch companion for non-dieters. sometimes we need to be consumed with an issue…

    rock on, lady! you inspire me!

  5. Amen to that! Love your re-worked Serenity prayer!

    When my son was newly diagnosed, the first thing “experts” warned me about was not to make autism the center of our lives. Easier said than done. Autism has marked all the points of our compass, colored our perspectives, and changed our behaviors; for better or for worse, it was the single most life-changing experience of our lives. On rare occasions, I can actually lull myself into believing that I have everything under control; most days, I am always wary and cautious and expectant.

    Reading your blog makes me feel less alone and more part of the world. Write on, my friend. Your words are beautiful.

  6. Kittymama, isn’t it ironic that while we work to re-attach our wayward bairn to the world, what we tend to accomplish is our own separation? Where’s Alanis? I’ll have her add that verse to her song… 🙂

    thanks, all for thoughtful words…

  7. Children often reflect the problems that the world has, but the world would prefer parents to believe it’s their children (or the parents of those children) that are the problem.

    I’ve been both a student (college graduate) and a teacher (homeschooling). I’ve had my children spend some time in the school system and time in my educational system. My conclusion? If a child isn’t doing well with learning, it’s most likely because the teacher doesn’t know how to teach that child. All children have a natural curiosity for learning. It’s other things that get in the way. The skill needed is knowing what those things are and knowing how to make the proper adjustments.

    I think parents know better than anyone else what’s best for their children, but with so many ‘professionals’ involved, how can chaos and confusion possibly stay out for long?

  8. To be honest, I think that you are a GREAT mom to your autistic children. However, I also thought you were a great mom to your “normal” and merely slightly better than average children too. (who maybe roll their eyes from time to time because we are feeling less noticed in the circus that is your everyday life because we don’t have special needs)

    🙂

    B

  9. Dear God, in addition to what’s been asked, give her also the pride of accomplishments, the fortitude to see the future, and the ability to hear the music of life that plays in all people of brave hearts, clear vision and compassion for all others.

  10. From someone with no special needs children at all, I believe you do not talk too much about autism. It’s your life. You can’t ignore it. Everyone talks about/writes about what they know. You KNOW that. You are insightful about the topic. I know if I WERE dealing with these things, your words would be a beacon and a comfort. But I’m not, and I still love to read your blog.

    You may think this consumes you sometimes, but you very clearly have balance in your life, and I am certain your family gets a wonderful benefit from that.

    Write when you can, about whatever you like!

  11. I do not have an autistic child, but I never mind when you talk or write about your experiences with your children. Sometimes I don’t know how to respond, but it doesn’t mean I don’t appreciate your efforts, trials, and accomplishments. I especially like the nicknames you have given your children.

    Your serenity prayer is moving and so is the amendment offered.

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