This past Friday I had the honor of having my blog featured on the Autism Speaks Facebook page. People who took the time to read my post learned about my feelings regarding what will happen to Justin after his father and I are gone (I know, so uplifting!), and as usual, there were many comments on their Facebook page regarding what I wrote.
Many of them were lovely, and I am deeply appreciative of them. Some were, shall we say, very interesting.
There were the people who told me to have hope which is nice, but my son is thirteen and still likes to cuddle up with me at night and have a bedtime story. He will not live independently.
There were the individuals who wrote about their high functioning autistic children, many who started out non-verbal as youngsters but are now on the student council, the debating team, you fill in the blank.
If asked, I’d refer them to my bedtime story sentence.
There was an invitation from Rocky to try his all-natural vitamins, as they work WONDERS!
There were comments regarding friend’s autistic kids on the honor roll right next to comments expressing the fact that the writer could never die.
Those latter ones always get to me.
My personal favorite was the person who didn’t understand the point of the post because I didn’t explain where Justin would live for the rest of his life.
Still figuring that one out ma’am.
And then there was this one from a grandparent of an autistic child (one apparently doing very well): “they can learn to take care of themselves if parents would stop doing things for them and teach them to do it on their own. Autistic children are smart. Stop making their disability a disability to them.”
I promised I’d always be honest with my readers, and I could tell you this one hit me hard or brought out the tissues, but its ridiculous factor simply enabled me to justify eating more chocolate that day.
That’s me, always looking for the positive.
Eight, maybe even five years ago, I would have had a sick feeling in my gut as “mommy guilt” crept in over that therapy/vitamin/shaman I didn’t try when he was a toddler and his brain was still malleable. I would have forgotten that Justin was diagnosed before insurance picked up the ABA tab, and that I was his primary therapist thirty hours a week for eighteen months before he was eligible for school. I would probably have glossed over the fact that when we learned his prospective school program was “okay” for him but not ideal that we completely uprooted our family and left the Washington DC area that we loved, for the Jersey shore my husband was not so fond of.
I would have forgotten that for years, and years, (and years!) my whole life centered on helping this child to be as independent as he could be.
I would not have remembered that Justin was, for a time, my entire life.
Now, I’m thankfully past those days of “parent shame” (I stole that from one of the people who responded to Grandma, bravo!), but I’m writing this today for any parents of newly diagnosed children, or those who haven’t been initiated into the autism community for that long.
Never, ever, EVER let anyone shame you into believing you’re not doing enough for your child.
I have two autistic children. My youngest was born four years after his brother, and quite honestly I can tell you he probably got only half the attention and therapy his older sibling received (Mommy was quite tired by that point). There were days we actually played therapy hooky, days when going into my fourth consecutive year of therapy with one of my children I just couldn’t pull it off.
I know. As Cersei would say in Game of Thrones, “shame.”
While my youngest certainly still had a mom passionate about helping him be the best he could be, the absolute focus with which I executed this endeavor with his brother was not replicated with my last child.
And someday, he could be president. His brother will need someone to care for him until he dies.
I just need to say this, as the mother of two autistic children, and a former veteran educator. So much of your child’s outcome depends on their innate abilities and their level of motivation.
I’ll say it again. So much depends on their innate abilities and their level of motivation.
Memorize it. Please.
Do as much as you can, every day, to help them reach their goals and do as much as they can for themselves. At the same time take care of yourself, and take breaks (mine include wine and chocolate, shocking I know).
Most importantly, no shame for what you or your child can’t accomplish, ever.
And I mean ever.
For more on my family visit my blog at autismmommytherapist.wordpress.com
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