Edge of the Storm.

It is ice cold outside even though it’s spring.  The clouds are white and puffy against the bluest of skies.  Except for that patch ahead.  It is dark and foreboding.  The kind of dark that bespeaks of thunder, hail and lightning.   We are on the road.  I’m hoping that we can drive around it and avoid the rain and strong winds.  Will we be able to skirt the edges or will our route take us in?

Every day, I try to skirt around a different kind of storm.  I can see it brewing in my son’s eyes.  What will be the straw that breaks the exterior of my son’s calm?  How much of the day will pass in relative peacefulness before there is screaming?  Before an endless loop amplifies into a yelling repetitive chant?  Before it all explodes in full scale meltdown?

You may wonder why I simply do not exercise some discipline to stop it all.  Believe it or not, the exercise of discipline with an ASD child is a very tricky business.  If the behavior is attention seeking, by disciplining, I’m giving in to what he wants.  Other times, behavior that can appear to be mean-spirited, defiant or disobedient but is often just an inability to communicate or to cope with something that is disturbing to the senses or overwhelming.  Something that my son can’t explain.  And so, inside that little 4 year old head, he has to deal with it alone.  Even when I am holding him tight, he is still alone because he cannot explain what is happening.

Autism is scary.  For me, it is like looking into one of those deep, dark storm clouds and not being able to figure out what caused it, how deep it goes, or how long it will last.  Imagine, if you will, seeing a terrifying storm looming right next to you.  You can see the damage it could inflict but you do not know if it is coming your way or if it will pass.  Imagine trying to avoid that storm every day of your life.  Sometimes you can’t and you suffer emotional or physical hurt every time.  Not life or death hurt, but enough to feel the wound.

No matter how hard you hope that the cloud will be gone, the next day, when you wake up, you are right on its’ border.  You don’t know if it is coming or going.  But from the days that have passed, you think you see a pattern, a way to avoid it, and hoping for the best you try to follow the pattern but, no matter what you do, the storm comes again.

This is the life faced by every parent of a child with autism.  It is not an easy world.  It is one without a significant amount of communication.  A world where the parent is often left to guess to fill in the blanks.

The words come hard and slow.  Mostly, my son just wants to utter phrases or single words and expect me to understand by his tone, his eyes or the addition of a second word what he needs.  Sometimes, he will give me a whole sentence.  Other times the sentence will even have a meaning that makes sense.  I have to draw the words out through bribes and withholding.  Sometimes, I just have to tell him to stop.  Truthfully, when I tell him to stop, it’s not because his behavior is bad or mean but simply because I can’t take it anymore.  Repetition is a daily, hourly active participant in his language.  After I hear it for the 200th time non-stop in a row, sometimes I just can’t take it anymore and ask him to please just stop.

When I do, sometimes it works.  But then I end up feeling bad or selfish.  Other times, it simply propels him from the edge to deep within the storm.  He cries and yells and repeats words that have no relevance.  He counts or yells equations out loudly in a high pitched manner (ONE PLUS FIVE EQUALS…… TWO PLUS THREE EQUALS….)  accompanied by tears, a high pitched scream and more yelling.  These episodes can last anywhere from five minutes to two hours or longer at a time.  When they happen, they feel like he grabs my nerves and electrocutes each one in slow motion.

I hold him and try to calm him and eventually, with lots of positive reinforcement and some occupational therapy techniques, I can get him to calm down.  Usually, by that time, I am a shaking mess with a calm exterior and soothing voice.  The storm will pass.  But it leaves its aftermath in my body, in my stress level, in my mind, and in my heart.

And that is why it is a struggle to choose what the right route of discipline for a child with autism.  Do I discipline or ignore or confront or retreat?  I know what the ABA says.  But the reality?  What are the costs to me in the moment?  Am I already sleep-deprived, sick, worried or weak in some other way?  These are all real considerations for me in determining what course of action to take.

Every mom of a child with autism has scars from these battles, these choices we make.  They heal over but are tender reminders that the war we fight against the storm is ever present.  The scars make us tough, sometimes jaded, sometimes worn and hurt.  We disguise them to the outside world.  We look for hope, for progress, for the happy moments to carry us on.  We learn to smile while we are shaken to our very cores.  Each storm, no matter whether it is large or small takes its toll.

When you see us out there, give us a hug.  Don’t ask any questions.  Don’t give advice or suggestions.  Just give us love.  Love makes us stronger.  It heals us as we continue to walk our posts each day on the edge of the storm.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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18 Responses to Edge of the Storm.

  1. Big Daddy says:

    We certainly have the battle scars. But, for us, the storms have become a little less intense and the patches of sunshine have become more and more common.

  2. Kelly says:

    Oh, yes. This sums our lives up nicely – at least this aspect of our lives. I love the part about (to paraphrase poorly) not offering us advice, but to just accept that we are disciplining, or not, for a very specific reason based upon our kiddos’ situation, reasoning and OUR needs at the time, too. Perfectly stated – the way you said it, that is!

    I need to forward this to my entire family!

  3. Kelly says:

    Very good view on decisions we “thumb through” before deciding on which action to take. I need to forward your link to my entire family!

  4. Amen…
    I have 2 boys on the spectrum Aspergers and Aspergers/PDD-NOs (not really sure). My most difficult one is 15 years old and it’s still difficult to weigh the discipline vs. ignore vs. stay calm vs. don’t give in. It’s a constant state of avoiding the storm. It’s a constant state of trying not to loose it. I applaud you for having so much education and choosing your son first.

  5. Lynn says:

    I think that the normal rules of discipline just do not apply with our kids. And whenever I tell Audrey to stop saying something over and over she just starts a new script “I should not say….”. So I definitely cannot win.

    • solodialogue says:

      I agree, Lynn, that the normal rules have been thrown out the window. Audrey is good… She knows how to work that first part right in there. Now, I can see that coming my way too. Thanks for the head’s up… I think. 😉

  6. You’re right, there’s the textbook answer of how to handle these situations and then the reality that one person can only handle so much in any given day. And I can so relate to being a “shaking mess with a calm exterior and soothing voice.” But I really find hope in knowing that it will get somewhat easier as our kids get older.

  7. Laura says:

    Like Big Daddy we are war weary and battle scarred, but things have calmed quite a bit in the last year or so. I hope your experience will be the same.

  8. Lizbeth says:

    I’ve thrown out the dicipline manual and do what I think is needed at a particular moment for my son. We’ve developed our own system which seems to work and I ignore everything else…if I didn’t, I’d be up to my ears in people telling me I’m too soft, too hard on him, or I should try something else. 🙂

  9. Flannery says:

    I have to believe there are calmer times ahead, or I’ll go crazy. We have to continually tweak our “discipline” to suit the situation. It’s never easy, but it seems there are good weeks and bad weeks. I hope things even out for you.

  10. Hi there — sorry to have been such a bad blog buddy this past weekend (bad RA flare kept me from doing a lot of things I enjoy :-P)

    This post really speaks to me, Karen. I was having the same sort of storm feeling on Thursday night when we took Kaia out for a burger. She was walking around the table, trying to swipe french fries from other patrons, jumping up and down on the bench… the usual. As we tried to persuade her to eat some of the food we offered, I watched another family with three kids probably all under the age of three — they sat down, ate, and had a conversation together. I thought about disciplining Kaia… I really did. But she was *eating.* Albeit, small amounts and very slowly… but there was food going in. If I had disciplined her, that would be the end of the eating.

    Maybe the parents of the three children would have said I was too soft on her, but I know I made the right choice for use at the time. Just like you do with Toodles every day.

    • solodialogue says:

      I so know exactly how you feel. I have basically given up on restaurants. We started a program for that through ABA but they put it on hold to work on other things. I think you made the right choice – you have to pick and choose your battles. You knew the food going in was more important. It’s a tough road. At least, we can travel together and try and it smooth it for each other along the way.

  11. eof737 says:

    Sending you virtual hugs… I would never even pretend to know or understand the enormous effort you make with your son. He is a beautiful child and you share that very well with us. 🙂
    Eliz

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