Tuesday, April 30, 2013

A Different Kind of List for Autism Parents....


So, we've all seen the multitude of lists published around the internet about what to say to an Autism parent, what NOT to say to an autism parent, Things an Autistic child wished you knew, etc, etc. I read them, these days, half-heartedly, and with even less enthusiasm. Not that I don't agree with them whole-heartedly. I have just seen so many, and most of them, anymore are just regurgitated, edited versions of the originals. (Do we honestly even know where the originals are??) 

I happened upon another Autism Parent's blog, and saw his post about some of the things he allows his Austie child to do, that most NT (Neuro-typical) parents would never allow. Got me to thinking. (Not that it takes much to get the wheels turning.) What behaviors and activities does our little prince get to take part in, that most NT parents would cringe at? Some of these I encourage my son to do because it's a typical thing that kids do.  Some of these I let my son do because I pick & choose my battles.  And some I let him do due to the limitations from his disability...


So here they are... no particular order... the things we let the little tyrant…erm, prince, get away with:

NOT DRINKING OUT OF A REGULAR CUP
Sippy cups and sport bottles that stimulate his vestibular system are a must. Even if he is 5. Just about every major milestone that Malcolm has hit, has come a great deal of turmoil, frustration and hard work on Malcolm's part. If he's not ready to give up this last vestige of 'baby-hood security', then I'm okay with that. The fact that I don't have to take it with us anymore is a major achievement all it's own, and we rejoice in that little success, even as we're purchasing yet another bottle brush, so we can scrub out the rubber stopper that fits in the lid of the sippy cup that he uses at home. 

TONS OF TV/VIDEO GAME/COMPUTER TIME.
This is the ONLY time he can focus and relax. So yeah, if he is over stimulated I just let him play on the computer or veg out in front of the tv for a while and it helps calm him down, while he is having fun. This is not to say it’s the ONLY recourse we utilize. He spends time in his ‘safe zone’ (his bedroom, with the lights down, and the noise reduced.) but seriously, who wants to be relegated to their bedroom everytime they’re having a bad day? Sometimes, it’s okay to just partake in some mindless, meaningless activity.

NO HUGGING POLICY
Not being "polite" by hugging his relatives. Malcolm is not a touchy feel-y kinda guy. And I refuse to make him hug someone he doesn't want to. That said, most everyone that visits him regularly gets a hug and kiss from him, as long as you’re in his ‘inner circle’. If he doesn't know you very well, or doesn't see you very often, don’t get offended, and don’t take it personally. He has some severe personal space and sensory issues. Remember, Mommy and Daddy didn't get to cuddle with him until just very recently, and even then, it’s on HIS terms.

STAYING UP RIDICULOUSLY LATE IF HE DOES NOT HAVE SCHOOL. 
We live and breathe our weekly routine, but occasionally, we say to hell with it and just let him be the night owl that he truly is. 
MENTAL HEALTH DAYS
Letting him out of school (or some other scheduled activity) if he has had a really bad meltdown. I'm not saying this is a regular fix. I’m not even saying it happens occasionally. In fact, school has never been an issue, but some days- it really just is not worth the battles that will occur if I don't bring him home or if we even leave the house. Once he hits a certain point, the rest of the day is shot.

NOT MAKING HIM CLEAN HIS ROOM.
Some days I require him to help, some days, I just do it myself, but most days, we just leave it as is. Are hot wheels, action figures, books and stuffed animals on the floor REALLY that detrimental to anything else going on? Not really.

EATING WITH YOUR HANDS
This is a combination of picking and choosing my battles and adjusting my expectations due to Malcolm's fine motor issues & major eating issues.  When your kid doesn't eat very well to begin with as long as he's getting it down I don't care that he uses his hands.  This might change in the future, but for now this is a battle not worth fighting. If it gets him to eat a salad, I don't care if he just shoves his face in the plate. He's eating, and that’s a win in my book. Also- cleaning your plate is never required in this house.

SPLASHING IN THE TUB OR POOL
It's a rite of passage for kids to splash around in the tub.  So what if water gets ALL OVER the floor!  That's what towels are for.  Not to mention, it took us YEARS to get him to a point where bath time wasn’t a nightly occasion for a meltdown. And the pool?!  That's what pools were meant for...  Splashing!  Why are all the NT parents discouraging splashing?  What am I missing?  Did I miss the memo?  :-)  I'm the one Mom in the pool who's splashing water in my son's face.  I must look like a big jerk...

EATING BREAKFAST FOR DINNER ...OR POPCORN FOR BREAKFAST OR... SPOONFULS OF JELLY FOR LUNCH
Again my kid's got major eating issues, so when he's hungry he gets what he wants (usually) and that's it.  Other ASD parents know what I'm talking about.  If he wants cinnamon toast for Lunch, so be it. If he wants Spaghettio’s for Breakfast, I’m breakin’ out the can opener. If he wants oatmeal for dinner, open the box of Quaker Oats and rev up the microwave.  I'll give my kid a multivitamin to make up for the lack of nutrition. 

GETTING DIRTY IN THE PLAYGROUND
Every time I take Malcolm to the playground I overhear at least one parent say "your getting your pants all dirty!" WTF?  This is what playgrounds are for!  Getting dirty!

WATCHING TV DURING MEALS
Not every meal... but again you gotta pick and choose your battles.  If having a show on will get him to eat more then I'm putting a show on.

NOT EATING AT THE TABLE
Mr. Malcolm usually does pretty good at Breakfast. Lunch, he seems to do good at school. (At least we’ve gotten no “He won’t stop wandering” complaints from his teachers… yet.) Dinner? We try to make him sit at the table, but usually, it ends up being kind of a wandering around-graze-fest, as he finds something else that is much more interesting than mom’s cooking. He does return to refill his mouth, only to jaunt off as he begins the slow process of chewing. Very few meals have captured his attention long enough to turn it into a ‘sit down meal’. Mac N Cheese. Pizza (about half the time.) Spaghetti. That’s about all I can think of at the moment. There might be one or two more. Probably not though.

JUMPING IN PUDDLES
Back at the playground I hear NT parents yelling "don't jump in that puddle!"  Meanwhile I'm on the other end of the playground trying to TEACH my kid how to jump in a puddle.  Jumping in puddles is another rite of passage, a part of growing up... (Except between the months of November and March-ish, in the Midwest… when most puddles also contain a great deal of ice and/or slush.) Then I turn into the puddle-nazi. “NO!!” ;)

TALKING TOO MUCH OR TOO LOUDLY
My kid was non-verbal until about a year ago, so usually, the chatter doesn’t bother me. We don’t tolerate screaming, for the sake of screaming,  or screaming at his sibling, but for the most part, his voice is nothing but music to our ears. We love hearing him go off on a tangent, even if others barely understand him.

SITTING IN THE CART AT THE SUPERMARKET/STORE
He’s been pushing him to walk more lately and he's been doing pretty good... due to his school going on field trips every 2 or 3 weeks.   But if we need to get in & out of Walmart quickly or if Malcolm is having a bad afternoon I have no problem stuffing my 5 (almost 6) year old into the cart and giving him a bag of popcorn and a book to keep him happy.

JUMPING ON HIS BED...
I can remember just a few years back when Malcolm didn't know how to jump. And they would work at it in his occupational therapy sessions.  Now he's a jumping machine. And we encourage it. Why? It’s good for him. It’s called compression therapy, and it helps bring his little body into alignment, calm him down, and divert meltdowns before they happen.  It gives him some much needed input, that he isn’t getting otherwise. We don’t have a trampoline, so uses his bed like a trampoline.  Now 3-5 more inches and he'll be hitting the ceiling when he jumps on the bed. But we will allow it until the bed breaks or he hits his head on the ceiling....whichever comes first.   :-)



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