You live for the most part contented, happily thinking you can conquer the world, and two seconds later--when the pharmacist looks at you and says, this medication is not covered, your son's Medicaid has been suspended, or when a care taker calls and says "I can't pick up Ben today"--panic washes over you, and you are convinced that this interminable juggle of dependent care, work, and illnesses is thoroughly beyond you, and that the Almighty's infinite wisdom failed Him, when he gave this child to you to parent.
And yet, isn't he adorable??
Then one day you wake up to an added reality. You notice that professionals, over time, more and more start hinting at you that your son "may" be on "the spectrum".
Is he?
Hmmmmm?
You are a seasoned mom and you have had more diagnoses slung about you and your son than there are grains of sand on the beach. No panic there. It's just another label.
But, the seed has been planted, and you do start to look for a few signs.
One day you convince yourself that yes, with this and that behavior, he probably is mildly autistic, the next day because of his emphatic and mature reaction to one minor disappointment, you convince yourself that he could not POSSIBLY be autistic.
Then the busyness of life overcomes any concern for such trifles as sticking a new label on the specimen that your son so often has become... in fact, the thought of autism, Down's, dysphagia, and the numerous medical conditions that continuously plague him... who cares?? You have other fish to fry. He needs to get in for that dental cleaning, rehab needs to fit him for new braces for his feet, you missed the orthodontic appointment because of traffic last week, and of course, you never rescheduled opthalmology when the doctor canceled the appointment because she broke her leg skiing. Also, your son needs a new glasses prescription... and wait!!!... when WAS the last time you took him to audiology and had his hearing aids serviced?
Autism --- it's a good question.
There is no doubt in your mind that his emotional trips, every time his routine is broken, every time people laugh around him, every time certain persons go near him ... those emotional trips are time-consuming, you have no real means for curbing them or helping him cope, but you kind of got used to them, that is just him, and really, rehab, ophthalmology, orthodontics, to say nothing of that annual orthopedic Down's eval that you forgot last year... those things come first.
No, I am not a procrastinator, at least I put off thinking that I am one :), and I am fairly organized and on top of my son's diagnoses and appointments most of the time. He functions well --some of the time-- and he has severe behavioral issues at other times. SEVERE. Like the day he darted out of the house into traffic... in a rage... unstoppable. He sometimes hides from people, like at Thanksgiving when he hid in the pitch dark, behind a wood shed at a friend's house, and we had to send a search party out to look for him.
Autism may well be the next bend our in road. Increasingly, it feels and seems real enough. And if it is, let's just embrace it and move with it.
He has many risk factors. For example, he was born with cleft lip and palate, he has a swallowing disorder, he is hearing impaired, in short, his communication skills, both receptively and in terms of his own output are limited. He has experienced some stress and trauma in his life. And he does have significant repetitive motor behaviors, unusual vocalizations (usually grunting and throaty noises), feeding issues and sensory motor issues, as well as increased anxiety, irritability, severe difficulty with transitions. He has an extreme aversion to certain persons and will not even talk to them. He talks to walls and refuses to engage people or make eye contact any time there is even the smallest conflict (whether it involves him or not). And he repetitively generates calendars through 2014, 2015, 2016, 2017 for a hobby in most of his spare time.
And if it be so, if the label autistic is about to be slapped on his forehead, so be it. Whatever he is, that is him, and that is precious and worth cherishing, and if the behaviors we already live with are mildly or moderately autistic, then let us embrace the label and pray that it will lead us to discoveries that help us increase Ben's potential to live a fulfilling life and function better in the company of others.
Merry Christmas :) We're on to our next journey in life, wherever that takes us. May God go with us.
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