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March 18, 2012

Realities of Parenting Severely-Autistic Children

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Sunday, ice cold and rainy. This makes a difficult day for my autistic son, Jamey, his nurse and the entire family. Wind and hail cancel plans to go anywhere. We’re stuck inside. You can only walk so much in the limited space of a home. Be great to have a giant indoor gym. Or spacious covered, enclosed patio. I consider the Mall, but that’s a no go, since we’re dealing with a leaky roof. Seems a new leak appears every few hours. I divide my time between gathering buckets and responding to Jamey’s needs. To prevent self-injurious behavior, the day becomes a steady stream of acute interventions. I help the nurse massage Jamey’s legs, arms and feet with apricot oil infused with lavender and orange. I assist in giving 2-3 warm Epsom salt baths, every 5 hours.

Around 3pm, because Jamey is exhibiting repetitive loud vocalizations, I crack open a capsule of L-Tryosine and pour it into his mouth. Within an hour, this reduces disruptive vocalizations. Thank you God!

The nurse on duty is a lifesaver. After we had won more nursing hours, I recruited him from a nursing training program.  Just a well-rounded, hard working person, who is also a great father, so I know when he’s with Jamey, he treats him as a father would treat his own son.

After another bath, Jamey shivers and stamps his feet. He’s in a hurry to get back to bed and bounce. He loves to bounce. The nurse offers Jamey his hand held vibration tube. Jamey holds it against his cheek and smiles. Then he starts hitting his neck with it. The nurse re-directs him to hold vibration tube on his chest. He thumps the tube on chest. He’s laughing as he does this, so we know it is behaviorally driven. He’s not in pain or anything else that could explain this. Just as he’s about to thump tube on lip, I grab it.

It begins to hail. On his bed, staring out the window, Jamey watches tiny lumps of falling ice. He’s always watching the weather. The nurse straightens the room and does some charting.

Jamey has a few myoclonic jerks. I pour two tablespoons of Blackberry Swirl Barlean’s Fish oil in his water, hand it to the nurse. “Just give it to him whenever he’s ready to drink,” I suggest. Jamey is funny this way. Even when you know he’s thirsty, he may refuse a drink up to 5 xs, before he finally decides he wants it and gulps the entire amount. Perseverance pays off.

Around 7pm, Jamey will eat dinner and be given evening medications. Topamax. Keppra. Mirtazapine. Clonazepam. These are hard on a young liver. That’s why I buy and supply Jamey with Milk Thistle and N-acetylcysteine. Both are potent liver protectors.

No matter how many cups of tea today, I feel fuzzy. Every brain has its ups and downs. I wouldn’t be surprised if my brain is sapped of serotonin and dopamine. It’s been years of acute and chronic stress. “Are you okay,” asks my teen son. “You look terrible.” I appreciate such honesty. It’s true. I’m sporting pajamas splashed with Ensure. Hair matted with oatmeal, as if there’s still an infant in the home. Eyes smudged with yesterday’s kohl eyeliner. And frankly, I don’t give a damn.

Tomorrow, Jamey goes to his day program. He’ll be back on routine. I’ll get dressed. Put on some fresh make-up. Condition my hair. Enjoy thinking without constant interruptions. Work on knee rehab exercises (a few months ago a horse fell on my knee and I recently had surgery).

Wait a second. Can you imagine if I had no help with Jamey after knee surgery? Little or no help is the reality for many parents with severely-autistic children. The only reason I have help is because I fought like a caged and wounded animal to get it. I worry again. Damn it, I’m always worrying.

What if the relief and support we have now is, when we least expect it, is challenged? Unlikely, but never be too sure. Never be too confident.  Stay guarded. What if some bureaucrat, trying to cut costs, arises and presents with the casual cruelty of a person who has never lived with severe autism? And tries to bully us into some bull? These are realities. I play these scenarios in my head. I gather endless evidence to protect my son— just in case. Evidence of when he was left alone in his room at a group home to beat himself so badly he needed ear surgery to repair the damage. Evidence of officials paid to provide supports who denied us support in times of greatest need. Evidence of other severely-autistic persons killed in out of home placements. Murdered and ignored. Evidence of cost of care of severely-autistics in state institutions vs. cost effective care provided at home. Evidence of dead parents and dead autistic children heard of only after their bodies are carried away and buried in the earth.

Maybe there’s part of me that knows because I have gotten the support my son needs, I must help others find the support they need. How do I help? I haven’t met the barricaded bureaucrats invading their lives with nonsensical excuses to deny help.

The emotional toll of always fighting for your child is both invigorating and debilitating. I secretly ache for families I fear may not make it. Who may end up another tragic headline in tomorrow’s news. I worry about myself. Even in my strength, there is still a piece of me that is fragile, fearful and feral. God has to constantly humble and teach me. I can be stubborn.

Will time heal these worries? Or will they open each time another incident occurs? Or do spontaneous remissions or bad news make me stronger? Spur me to regroup, rethink and act? Do I realize these worries and threats may always be here, but it’s how I react and handle them that will shape and hold our lives?

“You’re obsessing again,” I was told during battles to get more help. Can you imagine if I hadn’t been obsessing? I’d be trapped in my home, going nuts. My son would have little support. You don’t get through life with a severely-autistic child without being a little obsessive. Perhaps a bit of obsession gives parents of autistic children an advantage. Don’t give up. Stay focused. As is true of ice cold, rainy days, there is always tomorrow.

God can do anything, you know—far more than you could ever imagine or guess or request in your wildest dreams! He does it not by pushing us around but by working within us, his Spirit deeply and gently within us.” Ephesians 3:20 (MSG)

Speak up for those who can't speak for themselves, for the rights of all who need an advocate.” Proverbs 31:8  (Complete Jewish Bible).

“Those who sow in tears will reap a harvest of joy; for though they may weep while going forth to plant their seed, if they persevere, they will undoubtedly return rejoicing—bringing their sheaves with them.” Psalms 126


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