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This past Friday I had the honor of having my blog featured on the Autism Speaks Facebook page.\u00a0 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.<\/p>\n
Many of them were lovely, and I am deeply appreciative of them.\u00a0 Some were, shall we say, very interesting.<\/p>\n
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.\u00a0 He will not live independently.<\/p>\n
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.<\/p>\n
If asked, I\u2019d refer them to my bedtime story sentence.<\/p>\n
There was an invitation from Rocky to try his all-natural vitamins, as they work WONDERS!<\/p>\n
There were comments regarding friend\u2019s autistic kids on the honor roll right next to comments expressing the fact that the writer could never die.<\/p>\n
Those latter ones always get to me.<\/p>\n
My personal favorite was the person who didn\u2019t understand the point of the post because I didn\u2019t explain where Justin would live for the rest of his life.<\/p>\n
Still figuring that one out ma\u2019am.<\/p>\n
And then there was this one from a grandparent of an autistic child (one apparently doing very well): \u201cthey 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.\u201d<\/p>\n
Please.<\/p>\n
I promised I\u2019d 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.<\/p>\n
That\u2019s me, always looking for the positive.<\/p>\n
Eight, maybe even five years ago, I would have had a sick feeling in my gut as \u201cmommy guilt\u201d crept in over that therapy\/vitamin\/shaman I didn\u2019t try when he was a toddler and his brain was still malleable.\u00a0 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.\u00a0 I would probably have glossed over the fact that when we learned his prospective school program was \u201cokay\u201d 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.<\/p>\n
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.<\/p>\n
I would not have remembered that Justin was, for a time, my entire life.<\/p>\n
Now, I\u2019m thankfully past those days of \u201cparent shame\u201d (I stole that from one of the people who responded to Grandma, bravo!), but I\u2019m writing this today for any parents of newly diagnosed children, or those who haven\u2019t been initiated into the autism community for that long.<\/p>\n
Never, ever, EVER let anyone shame you into believing you\u2019re not doing enough for your child.<\/p>\n
I have two autistic children.\u00a0 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).\u00a0 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\u2019t pull it off.<\/p>\n
I know.\u00a0 As Cersei would say in Game of Thrones, \u201cshame.\u201d<\/p>\n
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.<\/p>\n
And someday, he could be president.\u00a0 His brother will need someone to care for him until he dies.<\/p>\n
I just need to say this, as the mother of two autistic children, and a former veteran educator.\u00a0 So much of your child\u2019s outcome depends on their innate abilities and their level of motivation.<\/p>\n
I\u2019ll say it again.\u00a0 So much depends on their innate abilities and their level of motivation.<\/p>\n
Memorize it.\u00a0 Please.<\/p>\n
Do as much as you can, every day, to help them reach their goals and do as much as they can for themselves.\u00a0 At the same time take care of yourself, and take breaks (mine include wine and chocolate, shocking I know).<\/p>\n
Most importantly, no shame for what you or your child can\u2019t accomplish, ever.<\/p>\n
And I mean ever.<\/p>\n
For more on my family visit my blog at autismmommytherapist.wordpress.com<\/em><\/p>\n Follow me on Facebook at Autism Mommy-Therapist<\/em><\/p>\n