Sunday, December 23, 2018

“Home” for the Holidays with Autism




I was listening to “No Place Like Home for the Holidays”, with all the cozy and warm feelings it evokes and thought nostalgically how nice it would be to be in my childhood home surrounded by family members rather than an ocean away. But that feeling didn’t last long.

My family hasn’t spent significant time with Ryan since he was two years old and not all that different than any child his age. They don’t understand what life with Ryan is like and in reality, don’t want to hear about. They’ll ask how we are, but they don’t really want to know. The things I am immersed in every day are the kinds of things that make people uncomfortable. On the rare occasion when I decide to unburden myself a bit and answer honestly when asked, “How are you guys?”, I hear either awkward silence or an uncomfortable “oh”, or even embarrassed laughter.

Family and friends implore us to move closer to “home” and some offer to help with Ryan—I’m not sure what that means to them, but I realize all too keenly that they have no idea the level of care my son requires. They tell us to come and stay with them so we can visit during the holidays, and when I explain that it’s very stressful to be with Ryan in an unfamiliar setting with a lot of distractions where he can easily slip off into a dangerous situation, they say they’ll watch Ryan so we can relax and visit. 
Half of all autistic children elope from a safe setting.
This is most common during holidays or on vacation.
Jayliel's body was found two days after he eloped.

What they don’t know is you can never turn your back on him for any number of reasons. He has no sense of danger and is what his teacher describes as an “adrenaline junkie”, he wanders and elopes, he bolts into traffic toward moving vehicles, and in a new twist has begun eating raw meat, to include chicken. Salmonella here we come!

On a scale of one to ten, watching Ryan is at least a 13 and that’s on a good day. He perseverates and truth be told, that can make even the patron saint of patience go crazy. As I write this, Ryan is playing over and over again (at varying speeds) the first note of the Spongebob Squarepants theme song…”Whoooooooo…”. Imagine this played repetitively for hours—enough to make anyone more than a little nuts. And that’s one of the less aggravating noises he plays over and over and over again for hours.

What I feel like sometimes...

He takes things a typical child his age would have no interest in and “loses” them. We have to hide all sorts of things because Ryan will throw them in the trash. Earlier this year, he took my husband’s wedding ring and threw it in the garbage while we were on vacation. We searched for days with no luck and finally before check-out we went through the kitchen trash and it was there in the bottom of the bag. He has thrown away “broken” iPads and iPods before he understood the batteries just needed to be recharged. Remote controls are often a target for "relocation". We lost many expensive items before we realized what was happening.

He is destructive—both and intentionally and just through inappropriate behavior. He is destroying the furniture in our rental through climbing and jumping on it, and he is no longer a small child. He is almost 11 and getting taller and heavier all the time. I correct him constantly, but he insists on doing certain things and like anybody, I sometimes need to go to the bathroom, answer the door or phone, or attend to someone else in the house. He uses these short opportunities to get into all sorts of things.

He is obsessed with fire and candles. One of his favorite things to do is blow out birthday candles. We relight them until they are small nubs on his birthday. He now will search every drawer and cabinet for lighters and we worry he will accidentally start a fire. We have a fireplace that we have never and never would use because the danger to Ryan and our home is too great.

He can be violent and aggressive. When he feels well, he is the sweetest child, but when in pain, he can act out violently, slamming doors and swinging them open with such force the house shakes and door stoppers fail, resulting in holes in drywall from the door knobs. He throws things. I have been hit with flying roller blades, toys, the controller for our video game system, etc. If he can lift it, it can become a projectile during a meltdown.

When in a rage, he roughly swings the cabinet doors until they come off the hinges; he has tried the same thing with our refrigerator and oven, but fortunately I’ve been able to stop him before he could do any serious damage to the appliances.

He scratches, head butts and bites—hard. He has learned that these violent meltdowns scare me and sometimes when he really, really wants something and I say “no”--from french fries to a visit to the playground--the behaviors that used to only occur when in pain that he’s unable to communicate are now used to try to intimidate me in an attempt to get what he wants. I recognize the difference, but it is scary nonetheless. Imagine keeping your rolling desk chair between you and your elementary schooler to block blows and bites.

We have cameras in nearly every room of the house because it is impossible to always be exactly where he is. We are getting to the age where running up and down over several flights of stairs repeatedly is exhausting while we are searching for Ryan when he’s snuck away with the stealth of a Navy SEAL--and found a place to hide in complete silence.

Imagine you have to worry about Child Protective Services being called because your child screams like a banshee at the top of his lungs like he’s being beaten and abused simply because he can’t find the exact Matchbox car out of hundreds that he wants to carry on an outing…or that someone will see these violent out of control behaviors and he’ll end up with a psychiatric hold. I have watched this happen to several folks in the online autism community. Or in another twist, that someone trying to be helpful will report domestic violence and start a domino effect of unintended consequences. 

Domestic Violence Awareness month where I live just happened to be a very bad month for Ryan. He didn’t feel well, and we were at the doctor and she did something that apparently hurt him. He slammed his head backward and hit my brow bone so hard that I had a huge black eye from it. He then turned rapidly around and bit me very hard in the cheek, resulting in a large lump and bruise—this kid is so fast he rivals a Bruce Lee-type of martial artist. He grabbed my (and the doctor’s) throat. I looked like a battered woman after this episode and being out in public had me afraid someone would think my husband had beaten me—especially with posters everywhere with a hotline phone number on them and there were a lot of concerned stares.

Please don’t think I blame Ryan for these behaviors. He cannot help them for the most part. He suffers from gut and brain pain. A medicine he took earlier in the year has caused a horrible and uncontrollable neurological tic that even wakes him at night when his right arm suddenly begins flying out hard. I sleep with Ryan because he has on more than one occasion gotten up at night and wandered off. I sleep with one eye open, basically. Not sleeping properly doesn’t contribute to a happy mood most days—for me or him. 


From http://nimarayan.com  Looks more like a jail than a bed to me, but I understand the "why" behind this design.
I miss my family and old friends, but at the same time, I don’t want them to see the way I actually live. I can’t even pee with the door closed because I don’t know what he might do in the minute I’ll be behind a closed door. Facebook makes my life look like a glamorous breeze and it is more comfortable for our families to think we have something akin to a normal life. I don’t want our families to know what we really deal with. I would prefer they think of Ryan as the sweet little guy they remember—and that he still is most of the time. I don’t want them to think of him as a monster, or my father to feel he needs to “discipline the autism away”. But with the constant media blitz normalizing autism and turning it into some sort of human evolution where these kids all have special skills and have a neurodiversity that should be celebrated, they simply don’t GET it.

And that’s fine…but it’s also why for us there’s “everyplace but 'home' for the holidays”, and any other day.

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