Blog #109~ A Good Day with Autism
This week I am sharing a chapter of the memoir which I’ve been working on about raising Nick. This incident happened back in 2009. He is now 20 years old and has Down syndrome and autism. This is for all the warrior moms and dads out their battling it out on the front lines……….
A Good Day with Autism
(A chapter from the memoir about raising Nick, by Teresa Unnerstall)
“Autism Speaks. It also flaps, tics, hums, snorts, grunts, yells and sings.” My friend, Amy posted this on Facebook recently. I clicked the “like button” and chime in my two cents. “And it also hits, kicks, pinches, drops, rocks and bops.” Today was no exception. My son hit most of the marks. Nick is seventeen years old and has a dual diagnosis of Down syndrome and autism. He has his good and bad days. Here’s a look at living with autism.
The bell goes off on the alarm promptly at six o’clock a.m. Like a typical teenager, Nick needs nudging. The morning routine moves like a conveyor belt. His clothes are laid out the night before along with a plastic bin containing his hair gel, deodorant and body spray. He eats a simple breakfast while I prepare his lunch. It is essential to keep things in order to set the tone for the day. I made a few comments in the communication notebook. His speech is very limited so we rely on the notebook dispatches.
Mrs. W,
Nick slept well and didn’t wake up at all last night. But, he is in one of his “dropping moods.” He dumped out my water bottle. Al’s coffee cup nearly went airborne. He’s also hitting the popcorn button on the microwave and running the water faucets full blast. Oh, and he nearly shot me in the eye with Stop Pain spray he got out of my gym bag. It’s going to be one of those days.
Good luck, T
The bus couldn’t get here soon enough.
That’s a good day with autism. So, what a bad day looks like? Last July we attended a family reunion in Hot Springs. The air was stagnant and sweltering as we walked into town. My brother, looking to save a buck, opted to park on the outskirts of town where the parking is free. Ten blocks later we reached the city duck tour destination (motorized WWII era amphibious vehicles.) The guide honked his horn and we all blew our yellow duck bill whistles in excitement. We were met with little but a dull entry into Lake Hamilton and the highlight was the abandoned parking lot where the old K-Mart used to be.
After the tour we grabbed a bite to eat. Nick had all his favorites; chicken nuggets, fries and a Sprite. I thought for sure that he’d be fine walking back ten blocks. I was wrong. Just as we started to cross the busy main street, Nick stopped dead in his tracks. He began to grunt and pinch at his cheeks really hard. Then, he lashed out like a crazed chimpanzee thrashing, screaming, hitting and kicking.
I put his arms in a basket hold and pulled him away from the street to a nearby bank plaza. I struggled as Nick is nearly my height. By then, it had escalated to a full blown meltdown. There is no reasoning or consoling him. My older son, Hank tried to help me to control him. But I don’t allow him to take the brunt of the attack. He lashed at both of us in his rage, clawing with his fingernails piercing our skin and drawing blood.
My sister Laura and her family stood motionless off to the side. Ten minutes later, Nick began to calm down. We sat down on the hard, black tile edging that surrounded a flower bed. Nick’s whole body was shaking. I encouraged him to take deep breaths to relax. Hank licked the blood off his fingers and arms and wiped them on his cargo shorts. I looked down at my hands dripping with blood and stinging. My arms began to swell with bruises. You could see the heat coming off the pavement as gnats buzzed all around us.
I looked up and saw two police officers coming up from two different angles. They approached with caution. Their hands lay across their holsters.
“Ma’am is everything alright here? We received a dispatch of a possible assault in progress.”
I brushed off the sweat and frizzy curls off my face and shook my head. “Well, I could have use your about ten minutes ago.” Along with your tazor, I thought to myself.
Laura jumped in. “Officers, my nephew, Nick has both Down syndrome and autism. He is non-verbal. When he gets frustrated and doesn’t understand he lashes out.
“Ma’am is that correct?
I nodded.
The officers scanned the area looking for anything suspect. My brother-in-law offered to hike back and get the car and pick us all up. The policemen stayed with us until the minivan arrived. They handled the whole situation in a professional manner. As we waited, Nick began to show his remorse. He started to cry and patted my hand saying, “I sorry.”
That is a bad day with autism.
Nick’s behaviors with dumping have been challenging. In the past six months he has emptied out full containers of laundry detergent, fluoride rinse, baby powder, shower gel, shaving cream, and a bottle of red wine and a sixty-eight ounce tin of olive oil. The cat isn’t safe either. Nick emptied fajita seasoning all over her. We didn’t expect to have to put child locks back on the cabinets at this point in our lives.
This afternoon while gathering up a load of laundry, I heard hundreds of pellets hitting the kitchen floor rapid fire. He had emptied out a four pound bag of cat food. I grabbed the broom without any reaction and told him to clean up.
As Nick swept, I repeated my mantra. “This is a good day with autism.” Deep breath. Namaste.
That’s what in my noggin this week.
~Teresa
Down Syndrome with a Slice of Autism 
As bad as Nick’s reactions can be for you and your family, how much worse could it have been with a police presence? That had to be scary. I wish there was more I could do to help support you and your family except just read this blog. The love, devotion and understanding you have shown for Nick puts the rest of us to shame.
Thank you Deb, it was more shocking at the time then scary. Once it sunk in afterwards, it struck me as very scary. I appreciate your support, feedback and sharing the blog. Getting the word out on what autism looks like is so important.
I think this is so accurate! Your descriptions are right on. The crazed chimpanzee is a perfect descriptor, that we know too well. Not many realize and take for granted that what most consider a bad day in their home is a good day in our homes!
I thought you might be able to relate to it living with autism as well. Thank you for your feedback and sharing the world of autism, Wendy.
Your ability to stay normally grateful for life since ive known u for over a decade, us admiable! Each day u seem to find a will and readin to wake up and face either a good or bad day! What makes it different is the emotional safety valves that are now ingrained in your emotional stability! Your strength even when u feel weak is stronger than many of us will ever have.. Because you love Nick and he loves you.. He is worth it! Oh the power of love!!
TJ Of all the blogs I’ve read, and I believe I’ve read all 109 of them, I found this one particularly unsettling. First of all, I have no doubt that you did not exaggerate what happened. I believe if anything you understated it. This story brings me up against the limits of my understanding of what is like to deal with Nick’s tantrums. I have been trying really hard to expand my awareness of the violent behaviors that occur. Truth is, I find it scary. The thought of never knowing and when it could happen. I notice that Hank tried to help, and since you didn’t mention Alan I guess he wasn’t there? I was struck that eventually, Nick expressed remorse about his behavior. I don’t remember your writing about that before so I was surprised he felt that. Had I been there as an observer I think I might have tried to help you with some intervention, very ineptly. Then again I most like would have stood on the sidelines with a deer in the headlights paralysis. Enough about me. This raises a question out of the depth of ignorance: aren’t there methods for training Nick when he begins such strong violent reactions that might deter him? I don’t mean to seem insulting and I have through the years devised ways that have interrupted my beloved pets (who possess limited intelligence but a high degree of natural instinct) from continuing certain troublesome behavior, like eating my orchids. I spray them with a water mister. After a while I don’t even have to actually spray them. I pick up the bottle, shake the water and they immediately stop and run to another room. It seems to me if Nick is capable of experiencing remorse that somewhere in his brain a connection that would extinguish the behavior as it begins would be possible. Again I admit my total ignorance, it just seems as if extreme measures require extreme means. I mean what if you and Hank had not been able to contain him with a basket hold? What other damage to you, Nick, Hank and your family might have happened? And that was 2 years ago, is Nick stronger now? You are in great physical condition and in this situation you prevailed. What about in 5 years? As you can tell I am totally perplexed, Joleene
From this story, you were at the
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Sorry it took me so long to reply (busy week, now playing catch up). Thank you for your inquiries and wanting to understand autism more clearly. To answer your question, there is a behavior plan in place. The triggers for this particular meltdown was the heat, also not using a picture schedule that day. The key is to look ahead at the day, figure out what might be the possible triggers, and cut them off at the pass as well using re-direction. Sometimes, we all hit a boiling point and get frustrated. Fortunately, the meltdowns don’t occur near as often as when he is going through puberty.
TJ I googled “autism violence ” and discovered more stories like yours and even worse. In one story a 22 year old killed his 60 year old mother. There was one, only one bright spot in the comment section, it was posted Dec 21, 2010. The overwhelming number of stories were horrifying. I notice I am not alone in my confusion and overwhelm by the dilemma. This is the blog I read. http://www.ageofautism.com/2010/12/man-with-autism-beats-mother-we-can-not-remain-silent.html Joleene Sent from my iPad
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While I am not Teresa, I am the mother of a boy who also has Down syndrome and autism. I believe you’re missing a big part of the puzzle here. There is a big difference between a person who is violent and aggressive with the intent to hurt someone, and someone who is triggered into a meltdown. My son has dislocated my jaw accidentally, kicking as I changed his diaper. This does not make me afraid of my child. He was not trying to hurt me. I get the idea that you think maybe we are afraid of our children. I do know parents who have made the heart wrenching decision to have their child live in a group home type situation when they could no longer handle them at home. But when a person’s brain doesn’t know to handle the incoming stimulus, and a meltdown ensues, you can’t recreate that situation to turn it into a learning piece. We don’t always know the triggers. But I wouldn’t say that my child is violent, and I don’t think Teresa would either. Not sure if that helped with your understanding. And again, maybe Teresa feels differently. We certainly do behavioral therapy, but not all meltdowns can be avoided.
Good points, Kristen and I totally agree. There is a big difference being violent (with intent) and being triggered by a meltdown. Autism robbed my son of most of his verbal speech. He can’t communicate that he is frustrated, unhappy, overloaded with stimulus, or doesn’t feel well in a verbal sense. He hits the point of no return and a meltdown can happen. Thank you for your feedback.
TJ I found this article. It is extreme. Could you ever consider police intervention? http://www.autism-help.org/behavior-out-of-control.htm Joleene
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Thank you, many of these things are put in place in his behavior plan (which like painting the Golden Gate Bridge is always in need of tweeking.)
You are such a great writer. I see so much of my little Max in Nick. Maybe it’s the haircut 😉 and that Max is also a dumper… and that they both have a great serve of humor…. but we have a dog instead of a cat that *sometimes* gets too much love 😉
sense not serve