Tag Archive | Occupational Therapy

How to (almost) break your autistic child & a few suggestions on how to help when you do . . .

imageThis is a cautionary tale, based on a true story. My story.

You don’t need to have a special needs child in your life to relate. I’m certain just about any parent can, and has, used a similar formula to the one I’m about to present to ensure a similarly awful outcome to any given day as the one I’m (somewhat reluctantly) sharing.

While I cannot guarantee your personal success, I’m fairly certain you could achieve at least a bad day by following my example.

Which I suggest NOT doing.

Before I begin, I want you to know I am not an expert, but I know a few things . . . I’ve done this crap before. I have four children. The youngest will be twenty soon and the oldest, twenty-eight. The ‘child’ used into this particular example is the oldest of my quartet of kiddos.

He is autistic and awesome and I’m pretty proud of the way I’ve raised him and all I’ve learned . . . that being said –

How To (almost) Break Your Autistic Without Even Trying

I find it best to begin the process of an unplanned, catastrophic day ahead of time by informing my child about our plans for the following day, this ensures he feels comfortable with what will be going on.

The stars don’t always align just right, but it’s helpful if he is just getting over an illness. Any illness will do, in this particular case, our culprit was pneumonia. He’d just finished a round of Prednisone and his mind and body were readjusting from the effects.

In our case, it works particularly well if my son didn’t get a restful nights sleep before I rouse and ready him the next morning. It doesn’t always matter, but it’s really helpful

I generally think it’s a good idea to go over our plans again before we head out, I find it gives my son, many folks really, a sense of security knowing how the day will unfold.

On this occasion, I used our morning time together to do just that. We went over the plan. First lunch, then his follow-up medical appointment, a bit of shopping, and a quick stop to the pharmacy for meds on the way home.

Everything was well and right with the world, so I thought. I’d no way of knowing what had already begun to bubble beneath the surface of his rather calm, almost cheerful countenance. I should have known. How could I not have known? It had been a rough and restless week for him.

IMG_1238Unlucky for both of us, I didn’t realize the countdown toward detonation had been triggered before I cut the first wire (okay, that analogy works better in my head than on a page.) I’m likening this situation to a bomb, wires everywhere, and they all look the same. If I cut the wrong one –oopsie– it starts counting down faster.

The day began fairly well, but then, I inadvertently severed the first wrong wire when I made the decision to stop somewhere we don’t generally frequent for lunch.

. . . . . . . . . . tick . . . . . . . . . . tick . . . . . . . . . .  tick . . . . . . . . . .

I could see his hesitation, but everything is a teachable moment, right? Stepping out of comfort zones is something I regularly work on with him. There’s a timing to these teachable moments though, I picked the wrong time. The salad bar and deli counter, filled with a multitude of choices, served as the knife I utilized to cut that first wire.

Ignoring what I should have recognized as minor distress and discomfort, I unwittingly snipped another wire.

. . . . . . . . . tick . . . . . . . . . tick . . . . . . . . . tick . . . . . . . . .

For lunch conversation, I decided to discuss some of the positive changes I wanted to implement into our family life, such as a new exercise regime, trying some new foods and forgoing some of the old favorites. I made sure to talk about new tastes and textures, I thought I was really sealing the deal by including facts and summarizing studies I’ve been reading. He loves facts.

Apparently he loves them less when those facts include things IMG_1259about why we should sustain life with better quality foods and things like, unbreaded chicken. Autism and breaded chicken chunks – it’s a thing. He has a hard time with change. He kind of hates it.

. . . . . . . . tick . . . . . . . tick . . . . . . . . tick . . . . . . . .

He seemed to perk up by the time we reached the office of his favorite doc. He quickly unperked when the doc ordered an allergy panel and handed him a paper for flu and pneumonia vaccinations while simultaneously talking about creating a nutritional plan, one that didn’t include breaded chicken. That wire wasn’t on me, the doc gets full credit as an unwitting accomplice.

. . . . . . .tick . . . . . . . . . tick . . . . . . . tick . . . . . . .

Obviously, I can’t always control the unexpected, but an unforeseen event that changes our plans is always a bonus when I’m inadvertently making sure our day will end up in a meltdown of some severity. The next wire snipped itself.

The unplanned plan buster had to be handled, (the unforeseen event being his brother locking himself out of the house) which meant instead of the shopping, which was next on the list, we had to make a u-turn toward home. I didn’t help matters by continuing to talk about the stuff we’d been talking about as we drove toward home. Changes. I didn’t even realize he was not even close to being an active participant in my rambling.

. . . . . . tick . . . . . . tick . . . . . .tick . . . . . .

When we got to the house, his safety zone, his sanctuary, I took the opportunity to snip another one of those pesky wires. I had a couple of calls to make, so why not take advantage of our time back home? We were there just long enough for him to get his bearings before I went on with my mission to deconstruct his psyche by telling him it was time to go again.

. . . . . . tick . . . . . tick . . . . . tick . . . . .

There were two things left on the list, shopping and picking up meds. By now, you likely know I sliced myself another wire, right? Actually, I think I may have just ripped out a handful with the next decision I made. Instead of a trip to the grocery store, I chose to enter the sensory hell called Costco.

. . . . tick . . . . tick . . . . tick . . . .

Made with Repix (http://repix.it)I find It’s best to visit Costco when they are super busy, just in case the vastness of the space, the harder than normal store floors, and florescent lighting won’t be enough to break my child. There will most always be guaranteed success if the aroma of several food product demos are wafting throughout the building.

I cut a few more wires while trapped in there.

I made certain we walked right passed a pungent salmon burger demo, and then . . . then, and I don’t even know why I did it, I lost my mind and suggested he try a taste. by the way, not defending myself, okay, a little bit defending myself I was completely sensory overloaded myself. Don’t forget, kids on the spectrum sometimes have mommas on the spectrum and our house should just be labeled, “Spectrum House, home of the Cook family).

. . . tick . . . tick . . . tick . . .

At this point, all the classic signs of an approaching sensory overload and emotional hurricane are present in both of us, we couldn’t get out of there fast enough.

One more stop, it should have been in and out, but I dawdled around and browsed the aisles just long enough to yank a couple more wires.

. . tick . . tick . . tick . .

I’m almost sure the ticking was now loud enough for everyone around us to hear. There was stimming, heavier than usual breathing, his Tourette’s was triggered, and he couldn’t  make make eye contact with anything other than the floor and a bottle of Ginger Ale.

*tick*tick*tick*

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By the time we got home, BOOM! Full on distress.

And it was all my fault.

The bad nights sleep, the constant coughing, breathing treatments, and coming off the prednisone – all working their magic before he even opened his eyes that morning, compounded by a day which did not go as planned . . .

How could it possibly not be my fault?

I should have known as it was happening how it would all end, right?

Wrong.

It’s so easy to blame ourselves and feel unwarranted guilt whenThe Pit and the Pity Pot things go awry. There is this negative little bully inside our minds, just waiting for things like this to happen so it can torture us, if we don’t stand up to it, we’re screwed.

We have to override that nasty little voice with our own.

I know it wasn’t my fault. I may have been a contributing factor, but it wasn’t my fault.

I didn’t plan it, it wasn’t my intent. Things happen. Plans change, sometimes things HAVE to change and we have to learn how to handle those changes. Guess what, so do our children.

Hey – we all make mistakes. It doesn’t matter if you’ve been a special needs parent for 2 years or, in my case, 28. This kind of day will happen. It just will, but it’s not the end of the world, just a bad day. You’re not a bad parent, you’re not a bad special needs parent. You’re human.

Sometimes I forget that applies to me as well.

Life is not usually going to cooperate with the needs and schedules, the likes and dislikes, our children have. They may be resistant to change, but that doesn’t mean they’re not capable of handling it.

We need to teach them (and ourselves) coping mechanisms; skills that will get them, and us through those rough days.

When my son was younger, we learned some amazing techniques from our Occupational Therapist. Joint compressions and brushing have saved many a day from ruinDeep tissue massage and weighted blankets have worked wonders.

One thing I’ve learned is this, once a meltdown has started, you often have to just let it run itself down. If you’re shopping, leave your cart and head for the car, return home if you must. Attempting to diffuse a meltdown in public is difficult and most often impossible.

I’ve seen parents struggling with a child during what looked much like a meltdown, but once they gave the child what he wanted, it stopped. There is a huge difference between an autistic meltdown and a tantrum. Sometimes it’s tough to tell the difference. The thing is, a tantrum can be stopped, a meltdown is an entirely different beast.

imageNow, as an adult, my son has an arsenal of coping techniques to choose from, and if he senses the storm brewing, he can often find shelter, but sometimes, he gets caught up in a tempest.

When this happens, we practice deep breathing, we talk if he wants to talk, we don’t if he doesn’t. Sometimes he needs to be left alone, play a video game, or listen to music. He’s allowed to check out, sit in a corner and stim, or whatever he needs to do to pull himself out of it.

Then when we talk. After. We try to figure out what triggered it. It could have been sensory overload, an oncoming illness, or something he misunderstood. Sometimes there isn’t an identifiable reason. It could have been something leftover from the day or week before.

If we can pinpoint it, we discuss ways we can prevent it from happening again and ways to handle it if it does. It’s taken hard work and perseverance on both our parts, but he has come so far from those early days when he was a puddle of flailing limbs and tears on the floor in the middle of the supermarket.

I used to wonder if a day would come when he would be capable of coping and it did. There is hope, there is. It’s hard to see it in the middle of the storm, but those dark clouds always pass.

We know every child on the spectrum is unique, what’s worked for us may not work for you, but that hope is there. You have to look for it sometimes, but it is always there and you’re not alone.

I know it can feel that way sometimes, that’s the little mind imagebully I was talking about. You are stronger and have more resolve than that voice telling you things will never change, the thing is, they won’t change on their own.

You have to seek out support and professionals who can guide and give advice, other parents who have been there, done that, and are still doing it.

So fear not when it seems you’ve almost, accidentally broken your child . . . they can’t really be broken.

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