Autism - The Rollercoaster

Autism is a rollercoaster - it’s fast and intense.  There are extreme ups and downs, twists and turns. There are competing emotions of love and fear, frustration and elation. There is certainly never a dull moment.

It’s springtime, and springtime always seems to be a tricky time of year. Kind of like the weather, it’s beautiful and invigorating one minute, and then the next minute stormy and frightening. I was thinking the other day that every gran mal seizure Liam has had over the years has occurred in the springtime. A seizure is also an intense juxtaposition of energy, fear, love and calm.

Liam has recently taken an interest in the weather. He talks about tornadoes. He loves to stare out the window during storms, and he is disappointed when they are gone. He's looking for some action I guess. Now he's got the weather channel app to keep on top of it.

This week, Liam has on several occasions reverted on the excellent progress he has made in the area of potty training. He’s 8 years old now. What do I mean, potty training? Yes, kids with autism are often still working on this well into adolescence. They are not easily embarrassed, so that is no motivation. Sometimes it’s hard to figure out what motivates his bad behavior. We know he knows better.

We were proud of the progress he’s made the last couple of months, actually remembering to go potty first thing in the morning when he wakes up, instead of just going in his diaper. At this age, the diapers often leak. Supposed waterproof mattress pads don’t really work either, so we’re having to replace an expensive mattress. This week, he emerged from school a couple of times in different clothes from what he went in. But yesterday, a big, big, bad, bad thing. When I got home from piano lessons with Lilah, Tom informed me that Liam walked up to our quite new sofa and peed on it. URRGGHHH! What is he, a freaking puppy? Thanks a lot little dude, that moment of impulsivity may have just cost us thousands of dollars. “Yeah, I know that means nothing to you, so how about I take away your Wii AND your iPad for a week?”

One of the biggest challenges for us with autism is the impulsivity. People sometimes like to play it down and tell me his behavior is just like any other mischievous young boy. But what we warrior moms know is, that simply is not true. It is NOT the same. The level of impulsivity and indifference to danger is extreme. Sadly, the frequency of adolescent young boys with autism going missing illustrates that it is different. It’s called elopement, and it’s probably the thing that scares me most about autism.

If you are paying attention, you will see that there are often searches going on for kids who have slipped out of their homes and wandered off, sometimes walking into the wilderness, and sometimes taking public transportation to who knows where? It usually doesn’t end well. I believe drowning is one of the top causes of death for autistics, because they are often drawn to the water, not fully appreciating the deadly consequences.

I have explained before that I nicknamed Liam Houdini from the time he was a toddler, for his fascination with doors and locks. As a toddler, Liam never met a baby gate he couldn’t find his way through. We had to install double cylinder locks all over our house and keep the keys out of reach. These days, Liam is once again too smart and capable for all my obstacles. He’s figured out all my hiding spots, and he just finds a way to climb and reach the keys, wherever they are. Now I often have to gather up all the keys and carry them around in my pocket, or at least sneak and hide them in a spot that he hasn’t yet discovered. Sometimes I inadvertently hide them from myself.

Liam w_blueball

Right now I need to come up with a way to secure the keys and  install new latches on the gates from our back yard that I can lock. Liam wants to be outside playing ball so badly almost all the time. It makes it hard for me to do anything else. He has to be watched all the time. I beg him not to hit his ball over the fence, but he is playing and doing his thing. He doesn’t care about my rules. And if it goes over and I’m not there, danger.

So when I need to go inside and get some work done, he has to go in too. What ever happened to the days when kids played outside all day while mom worked in the garden and cooked dinner? We can’t do that. I can try to steal the occasional bathroom break, but I can’t take my attention off knowing his whereabouts at all times. On the rare occasion that I do, he almost always gets into a situation.

Problem is, I have taken away all of his electronic babysitting devices. So now what? That punishment of taking away his favorite electronics is more punishment for me than him. He’ll have nothing to do but get in trouble.

Man, you really have to think on your feet to be a warrior mom. It IS downright exhausting sometimes. But I wouldn’t trade my adorably sweet, fascinating little boy with autism for anything. And last night,  just as quickly as he made me incredibly angry, he returned to that sweet little boy, frolicked up to bed, masterfully did his homework sheet and turned out the light. “Two minutes?” “Yes, I’ll stay here for two minutes. I love you.” “I love you too mom,” he said. And all is forgiven.

 

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Alison Peterson
Alison Peterson

Author



1 Response

Shane McAfee
Shane McAfee

April 09, 2016

Elopement is an issue my wife and I understand very well. Our son, Caleb, gave us quite a few scary episodes when he was elementary age. I think about these episodes and praise God that he is still with us at 22. Given those episodes of elopement, I am not sure sometimes how my wife or I emotionally survived the ordeal. I guess that’s part of what makes us warriors.

BTW, you should know that your husband, Tom’s, induction speech at the Rock and Roll Hall of Fame is what lead me to this page.

Keep fighting the good fight.

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