By: Melissa Archer/
An autism manual: (be warned: my sarcasm is showing & photo credits to Pixie Light Photography)
A what? A manual. THAT JUST SIMPLY DOES NOT EXIST, MY FRIEND! SO SORRY FOR YOUR LUCK. IN FACT YOU ARE SOL, UP THE CREEK WITHOUT A PADDLE, but do not despair for you can do this. Mama, with your bearlike tendencies, claws out, scratching through the haze of unknowns & Papa, who will eagerly clock in for every overtime shift to bring home the bacon so that mama can handle the minutiae of daily living; battling together for what is “right & fair” in every aspect of an unjust world where the odds against your darling will be stacked skyhigh. So I will refer (forgive me for not quoting the accurate source below ) to some cold statistics, but don’t be alarmed. Again, YOU CAN DO THIS! And you know why? Because God doesn’t close one door without opening a window. God sure knew what she was doing in giving you a child with ASD because you are managing it like nobody’s business. God only gives us what we can handle and you must have been at the head of the line when “toughness” was doled out. It can always be worse! “There but for the grace of God, go I.” (Seriously? I have heard every one of these statements from several loving, well-meaning onlookers.) In the early years, getting that diagnosis that in fact, “No, your child is not deaf. Her hearing is perfect. Don’t mortgage the house looking for a fix. There is none. And by the age of 30 her energizer-bunny-speed will peter out and she will be like all the other grownups, but still with autism” delivered barebones without bedside manners as one might expect from a professional who does not have a child on the spectrum. In your shell-shocked daze of not understanding you might let slip “but what does that mean?’ because again… THERE IS NO MANUAL!
And like parenting any child you’ll discover toilet training can be a nightmare and maybe your little one will be wearing the biggest size diapers right straight into Adult Depends; it depends on whether or not they figure out the whole toileting thing. But not to worry, it’s not the end of the earth. Nothing you can’t manage. You may discover accidentally at a beautiful wedding reception, sitting at the table with random strangers with teenagers present, a set of parents who do not reach over to cut their child’s steak into manageable bites & realize your mistake of not having taught princess to use a knife sooner. There are so many steps I’m skipping at discovering how to parent and best help a child with autism which is how we landed with this piece of sarcastic writing in the first place. Jazz somehow has reached the almost independent age of 18, where she is no longer our child, but a full-fledged adult entitled to Hippa laws and privacy. Suddenly, we are faced with limited choices as we opt to become her legal guardians. Someone has to look out for our kids, right? An hour and a half of ridiculous questions about her ability and wisdom to cross the street before looking both ways, to say “I’m sorry” when she hurts someone’s feelings, does she know the difference between a nickel, a quarter and a dime?” You have to tell yourself that this too, shall pass. Do we want to know her IQ? No thanks. We didn’t want to know it when they tried to test her at age 3 and she failed miserably. How does one choose the best route when having to strip basic rights from a child so loved we would move heaven and earth to see that she goes merrily along her path to freedom? I wish there were a manual for that. I’m thinking it would be titled, “Que Sera Sera” and maybe sung by Doris Day in a kick-ass 50’s dress. But AS THERE IS NOT A MANUAL FOR ANY OF THIS I expect we’ll just wing it, figure it out given time, or flop miserably and have some regrets along the way. Would we change anything at all about our Jasmynn? (You can insert your own list here) but as for me and mine, we were given an amazing opportunity– the chance to figure out a puzzle where the corner pieces may be hidden. Our young lady has touched more hearts in her lifetime just by simply being herself and inspiring hope than this family ever could have dreamed.
Autism Spectrum Disorder (ASD) is characterized by having deficits in social skills, engaging in repetitive behaviors, and having challenges with speech and non-verbal communication. Despite the media’s portrayal of autistic people being prodigies or having extremely high intelligence, more than half of autistic people have an IQ of less than 70. 30% of autistic children never speak more than a few words, they are sickened by bowel disease at a much higher rate than the average population, and many suffer from debilitating anxiety. By the most conservative estimates, almost 20% of children with autism also have epilepsy. Over 90% of autistic children who die prematurely do so because of drowning. The most severely affected kids may never be toilet trained and many struggle with frustrations that lead them to self-assault or assault a caregiver.
Melissa Archer is a retired English teacher, and mom to 5 girls (ages 40-16). Melissa worked at Lenawee P.R.E.P. for 7 years with the teen moms. She is now the President and co-founder of Jasmynn’s Voice, a 501c3 which has been gifting iPads/otterbox cases/ AAC apps to those struggling with language delays due to Autism since they began it in 2012.by