Triggers and Patience.

As the parent of a child with ASD, I need patience.  Lots and lots of patience.  And understanding – let’s not forget understanding.  I have to learn to use and exercise both of these concepts and know when to let things go.

A lot of what goes on in my house is inexplicable unless you walk in my shoes.  There are times when my son’s sensory needs or capacities can become overloaded without me ever realizing something is building up inside him.  There are times when he cannot verbalize the impending dark clouds that surround him.  And, while I know a lot of the triggers that can cause him pain and discomfort, there are other times when I am oblivious.

There are so many triggers in our world.  He can be upset by changes in routine or the temperature of a room.  He can be feeling sick and unable to express that.  There can be one toy he played with at age two that, today, three and a half years later, he cannot find.  He can have a toy with dead batteries or a missing part to a game.

Triggers are often camouflaged as day to day actions, words, situations and events.  Background voices in a crowded store.  A flashing light or clothing in the “wrong” color.  If I say the words, “as soon as…” (which I say every day not meaning to) or “You have to wait your turn” or if someone runs into me and wants to chat.

When I am oblivious to the cause, all of a sudden, when it is far too late, he will let me know in a huge way.  He will scream.  He will yell.  He will shout out colors.  No words of comfort, no objects, no discipline, no rewards will stop the inevitable, brakeless, downpour of crying, screaming, running, flailing and panic stricken looks and actions that will come raining down on me and anyone in his path.

Even if I see the dark clouds gathering and try to extricate myself from a social situation to attend to his needs, or recognize that he is caught up in labeling objects by color, and try to extricate him from a situation, it may be too late, and the inevitable occurs, regardless of what I do.

Sometimes he will implode.  Sometimes, he will pull and tug and yell at me if I am talking to someone I have not seen in a while.  He will not wait.  Is this ASD or is this a child attempting to control his mom?  Or is it both?  Should I discipline?  Should I give in?  I do my best in figuring it out.  Do I always get it right?  Not hardly.  But I try.

I’ve been told that part of the reason my son lacks patience is that, because of his autism, he has no concept of time and does not get the “wait” involved.  I don’t feel that this explanation is complete.  And I do not think this explanation gives my son enough credit.

My son knows how to set a timer and knows how long his nebulizer treatments take.  He knows I set the timer to five minutes for his time outs and 12 minutes for the nebulizer.  He can make it through those events just fine.  I’m thinking the lack of patience comes more from the lack of a clear definite rules to which he can refer in knowing how long a line will take or how much time will pass before he has control.  If that is his issue, then it is mine as well.  If I am sitting in a traffic jam with no understanding of what is causing it and no way of knowing how far down the road it ends, I have very little patience as well.

If I was unable to find the words to express what I was going through, what I needed, what it was that was causing me pain or aggravation, I would be frustrated, anxious, and angry.  There are many days that my son is unable to tell me what he feels.  Sometimes, when I try to understand, I can and I do.  Sometimes, I come up empty.  It’s kind of like when I edit my own papers.  Sometimes, I can see the mistakes.  Other times, I need another pair of eyes to correct things I have missed.

Patience and understanding are such important tools for both my son and for me.  Is it ironic that before my son came along I had little of the former and a superficial use of the latter?   While I work toward patience, I will continue to make mistakes.  I will learn from those mistakes and, I hope, increase my patience.  Maybe my son will pick up some of that as well.  Patience, by definition, will decrease anxiety.  In my own experience, patience can be elusive.  I’ve found that it does not, on it’s own, battle well against frustration.  Patience needs will to prevail.  I hope I can remember that.

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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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23 Responses to Triggers and Patience.

  1. kcunning says:

    Oh, this takes me back to the bad old days with Jake.

    With him, if there was ANY break in routine, or if ANYTHING was promised, I had to make a list detailing either the things that we had to do that were different, or what we would have to do before we could do that promised thing. For instance, one day, my mother told him that he would be spending the night with her the next day, after we had dinner at her house (I was bringing a cake). This was the list I had to make.

    We have to go to the grocery store.
    Once there, we get all the items on this list:
    (List)
    Then we have to pay for our items
    Then we get in the car and go to our home
    Then we take the groceries out of the car
    We put the groceries away
    We have dinner
    Mommy makes a cake
    The cake goes in the fridge
    We go to sleep
    We wake up and get ready
    You go to day care
    I pick you up from day care
    We go home and get the cake
    We go to grandma’s
    We eat dinner
    We eat cake
    Then you get to sleep at Grandmas.

    It helps that I’m a programmer, and I’m used to breaking things down like this. Didn’t stop people from thinking I was crazy in the store, however 🙂

  2. You REALLY nailed it this time, Karen!

    I’m thinking the lack of patience comes more from the lack of a clear definite rules to which he can refer in knowing how long a line will take or how much time will pass before he has control.

    This is actually something we have been working on with Little Miss — and it all comes down to visuals. Unfortunately, that begs the question: how do you come up with a visual for a time span when you are unable to measure the length? In this area, we’re lucky. Little Miss still does not fully understand the concept of a “minute” and I can use my 5-minute countdown flash cards to get us through. As I feel the event beginning to wind down, I show her smaller and smaller flash cards — regardless of whether a minute has actually passed.

    Maybe you can make up a fictional unit of time that T will fall for?

    • solodialogue says:

      That’s pretty cool that the flash cards are working.

      Haha! No fictional units here! What happens when those time units are up and I can’t produce? You know already… Let me know how that fictional unit goes over because I am definitely standing back and letting you try it first. 😉

  3. Melissa says:

    I think you hit this right on the nose about the lack of clear set rules about how long things will take. But I think the kitchen timer is a tool that may be able to be used all around without too much fuss, gives him the clearly defined boundaries he craves and you a few minutes to talk to friends or wait on line for tea. We used it with my daughter to establish a sitting program, and go back to it periodically when she’s out of her routine. I’m finding that even when I want to introduce something new, I set the timer to set a specific (short) amount of time at which point she gets reinforced and to do something she wishes to do.

    • solodialogue says:

      Now there is a moment when I need to stand back and let someone edit for me!! So obvious and I could not see it! I need to use that timer when he starts tugging on me while I’m talking to friends. LOVE it! Follow with reinforcement and attention! Yay! Thanks Melissa!

      • Melissa says:

        No thanks necessary, I hope it works!

      • Aspie Mom says:

        Brilliant!!! Wish I had thought of this 8 years ago!! That should work.
        Plus maybe a reward for making it thru the timer (after all he is doing you a big favor). And start short.

        No, it doesn’t get better. I still don’t do time. May be the intense world.

      • solodialogue says:

        I know! I wish I thought of this earlier too. Lucky – I didn’t have to wait 8 years to hear it…;)

        I will start short and give him reinforcement after. At this point, the elevator ride should suffice. (I don’t do time well myself.)

      • Melissa says:

        No brilliance on my part…. I had a good ABA therapist who brought that to the table! WE just made use of it in other situations. Now,.. if somebody could get my child to sit in a carseat on the bus…. anybody???

  4. Flannery says:

    Oh man. We don’t have the issues you do with changes in routines, but do we EVER have the challenge with patience and waiting. He will ask me for a tv show, and I will say no more tv tonight. And then he will proceed to ask me over and over, and ask me why not and when will he be able to watch again, ad infinitum.

    Ugh, this is the hardest issue. Mine doesn’t understand time very well, and whenever a limit is set, it’s like it ramps him up to an extreme. And I lose my patience. Too often.

    This too shall pass, right???

    • solodialogue says:

      The repetition can be a patience-trier, so true! I do lose my patience which is why it’s so important for me to get it back! How can I teach it if I don’t have any experience with the concept…;)

  5. I always say that one of the most useful things I can do is remember that however tough any of it is on me, it’s even TOUGHER on him. HE is at the center of it, and HE doesn’t have the tools to modulate, understand, or express it like I do, etc.

  6. JT says:

    Happy Belated Thanksgiving. I hope your holiday was happy and safe.

    A lot of what you are posting about sounds like “NT kid” stuff too. It’s one thing to have a timer and 5 or 12 minutes. He might not understand that but he understands a definite ending point – the timer. But a “wait” has no timer attached so he doesn’t get that there will be and end.

    I don’t know if this will help but I’m sure your cell phone has a timer on it. When you run into that friend you haven’t seen in awhile, why not try setting the timer for an amount of time? This will hopefully allow him to understand that the conversation will not be an eternity, it has an end. This is along the same lines as what Melissa suggested. Hopefully your friend will understand.

    • solodialogue says:

      I hope your holiday was happy as well! I plan to try the time on the phone the next opportunity that arises – and trust me, he won’t let me forget the plan because I’m quite sure he will (consistently) interrupt! Will report back! (And yes – my friends will understand. I actually think they will get more of my attention this way!)

  7. Jackie says:

    Waiting sometimes does have a timer on it, just its a flexible ending point. If your in a line, wait, has the ending point of being at the front of the line, and being served.
    Wait has an ending point when your talking with friends too, of when you finish the conversation, perhaps look at words that signal the conversation is coming to an end. Most people in my experience do have them, words and a particular tone of voice, although some are more subtle then others.
    (I don’t know if there is a facial expression that goes with it, not exactly my strength, but it wouldn’t surprise me if there was)

    • Jackie says:

      Not sure if that said what I”m thinking. Words haven’t been working to good for me recently. :S I hope so.

    • solodialogue says:

      Hi Jackie! You make an interesting point. There are these “flexible” endings but I believe they are much too sophisticated for my five year old to discern at this point (sometimes – I think the adults have trouble discerning the clues as well). I like the thinga bout being at the front of the line being the end of the wait. I’m sure I can work that language into a new social story. Thank you! 🙂

  8. Broot says:

    I think you’ve explained it very well. And I agree with Jackie! She said what I was going to say. 🙂

  9. ElizOF says:

    You have such a deep understanding of the dynamic involved in your relationship and that will serve you well… At the end of the day, we do our best, pick our battles, and leave the rest to be… You’re doing great lady! 🙂

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