As a special ed paraprofessional, I get to do a lot of adapting/modifying activities. It's sort of fun really, to take a task and break it down to see what needs to be changed in order for a child to able to do it. Almost like deconstructing a puzzle and putting it back together, but differently. Once I had a teacher call me a "master at adapting".
Little did I know, I'd be using that skill with Jake everyday so much that I didn't even realize that I was doing it. Once you look at the world through the eyes of adapting, sometimes you forget to turn it off. Sorta like when I'd be doing sign language at kids for work, and then come home and continue to sign at Jake.
"Mom, why the heck are you signing while you're on the phone?!?"
Oh. Ya. Right.
Before I delve into the strategies that work for us, I want to caution readers. I'm no expert. I simply am the wife and mom to a gifted dyslexic and a dyspraxic who have severe sensory sensitivities. What I'm about to tell you is truly the way we live, parent, and how we just get through the day. Some things may work for you, but some things may not. You might see some and think I'm a total nut case. If I have learned anything on this journey, it is that we need to do what works best for us, regardless of what the so-called professionals, friends, family, and books say. There is a lot of bad advice out there, and part of advocating is sifting through the garbage and finding the nuggets of gold, which sadly are few and far between.
I hope that some of this, even some tiny piece, is a nugget of gold for you. Because back in the dark days when I felt like curling up in a ball and shutting the world out, I would have given my right arm (heck, my left too) only to know what was going on, a way to help Jake, and most of all......that I wasn't alone.
One of the most valuable things I did in the very beginning was to keep a journal of Jake's behavior. I noted what got him 'hyper', what calmed him down, and what time it was. I noted things like if the day had been busy or slow, etc. Pretty soon I noticed a pattern. The most valuable information you can have is what sets them off and what calms them down. There is no check-the-box test thingy that will magically just tell you, but my God, in some kids (like Jake) it is totally undeniable. You may think that when kids get older they may be able to express it, but my 56 year old husband couldn't put into words what was bothering him until I pointed things out to him. Now, 'sensory speak' is part of our every day life.
Adaptation #1-Nab that meltdown before it happens
When Jake was little and we could see him beginning to spiral, we would decree quiet time in a very plain room with some books and lego. We'd set a timer for about 15 minutes, and extend it a bit if he wasn't calm by then. Not doing so met with DIRE results, usually in the name of an all out screaming 2 hour meltdown.
I used to stress so much about the "1 minute for every year of age" advice. My god. Forget it. With Jake, it never, ever, applied. In fact, following that advice made it worse because I had to continually put him in time out because he'd never actually calm down. Finally he'd have a meltdown of epic proportions that would only end when he completely exhausted himself.
Advice that is given for typical children usually is completely useless with kids who are not typical. You are the parent. You know that child better then anyone. Follow that gut instinct.
We made sure that Jake knew quiet time was never punishment, even when it happened multiple times a day. We always said, "Look, you're having trouble being calm so we're going to help you. " Sometimes he resisted, and usually it was when we nabbed it a bit too late. If we were on holidays and didn't have a space, we decreed TV watching, which also calmed him. (I know, how many parents tell their kid they MUST watch cartoons? It worked!) However, being consistent eventually taught Jake to figure out the signals for himself, and around 7-8 years old he began seeking out quiet time on his own. These days, my engine is too high is Jake's code for "My God Woman, get me out of here NOW before I have a coronary." Sometimes I can't get him OUT of his room.
Adaptation #2: Adjust your expectations
Many parents of kids with special needs worry that by avoiding some of the social situations that tend to produce overload for their kids, as in movie theaters, fireworks, birthday parties, or malls, that they are somehow depriving them. I felt the same way. So I dragged Jake along thinking that he didn't want to miss out.
It was ME that didn't want to miss out. For Jake it was more like Chinese water torture and always ended in him having a screaming meltdown. I have since learned that when something is that torturous to Jake, it is no fun whatsoever for anyone. Avoiding it is certainly not deprivation, it is survival. I had to simply get over it. Leave the boy at home when I grocery shop. Avoid fireworks at all costs. That bad behavior just before a birthday party? He's probably trying to get out of it because he doesn't want to go. Or on some level he does, or think that he should want to (I mean everyone else does and he's concerned he must be a freak not to) but he's anxious that he won't be able to handle it. Why put them through that?
I also had to adjust my own expectations in that if Jake could no longer handle something and the red lights were screaming "overload ahead", that I would be willing to leave (or at least take a time out to calm him down). Sometimes we just had to suck it up and deal with the fall out; I mean seriously, sometimes there is just NO escape to a quiet spot. However, I have found that keeping a sensory kit available usually does the trick and allows him to last longer. Slowly over the years we have drawn out the amount of time Jake has spent in situations that normally send him into overload, and he has gradually been able to handle longer periods of time. We never could have visited Disneyland when he was 6 years old. Even at 9, we were dancing very close to the edge of meltdowns the entire time. The total irony of that is that he didn't even like Disney that much. "It was too much," he said "I liked Bryce Canyon better."
Well, how will they learn to cope in the real world then? People would ask. I suppose he will cope like my husband, who doesn't shop unless he really has to, and then does so as fast as humanly possible. Who doesn't really enjoy parties, only rents movies on DVD and avoids fireworks. Adults can tailor their lives to avoid sensory overload. Kids are at the mercy of it.
Edited to add: Now at 13, Jake is able to dictate what he can and can't handle on his own. He doesn't carry a sensory kit; instead, he may use an Mp3 player to drown out sounds, or chew gum, or even avoids the place altogether (such as school dances).
Adaptation #3-don't be talked into forcing a child who is overloaded after school to socialize by having friends over/partake in after school activities.
For Jake, school is the ultimate in sensory overload. By the end of the day he's completely wiped, and having friends over or doing after school activities sends him over the edge. Instead he seeks out some quiet time to re-charge. Fridays and weekends are our days to socialize, and he will happily have a friend over for short periods. When he was younger, every Friday we would take a friend to the pool with us and home for dinner. This really helped to facilitate friendships with his classmates.
The exception here though would be that if your child is calmed by the after school activity, then by all means, go for it.
Adaptation #4-when you MUST go into a place that is very crowded and busy, and is sure to set off your child, don't leave home without a sensory pack.
At one time this was a fanny pack, but now Jake just shoves things in his pockets. We noticed just how valuable this was when we vacationed in Disneyland. For the whole trip we remembered the pack-in it were really crunchy/chewy snacks (beef jerky, nuts, dried fruit), gum, a squishy ball, sunglasses, and a camera. The ONE time we forgot it happened to be during the fireworks. Um..can you say...nervous breakdown? Jake was ready to pack up and go home right then and there. When we are shopping this thing is invaluable. What you include really is up to your child. Jake always has sugarless gum, some sort of ball, a tiny piece of sheepskin, and a book. I also have extras in the car. Usually I have something in my purse. It has, quite simply, become a way of life.
My husband? He has gum and some sort of beady thing that he tends to fiddle with.
Well okay, you've got the sensory overload under control, now what? Ohhhhhh there's so much more. Stay tuned, there's lots more to come.
Down to the specifics: adaptations and adaptive technology for school, keeping them organized, teaching them how to do chores and the homework thing. Oh and I'll also find links to books, sensory kit toys, and all sorts of other stuff.