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Recently I posted a piece in my various venues talking about what I\u2019d learned about autism in the almost twelve years since Justin\u2019s diagnosis. There were the usual variety of comments, some positive, some definitely less receptive (to put it mildly,) and although I usually don\u2019t respond to criticism with a \u201crebuttal post,\u201d this one has been ruminating for a while.<\/p>\n
So here it comes people.<\/p>\n
In the piece I wrote mostly about acceptance, of coming to grips with what severe autism means for my eldest son\u2019s life trajectory. One of the things I wrote was the following: \u201cYou will learn that you\u2019ll always worry about what will happen to them after you die. You will learn to live with it.\u201d<\/p>\n
I stand by those words. I have learned that I will always hate the fact I can\u2019t be with him, loving him, protecting him, and caring for him until his death. If I could change that and still give him a normal lifespan, I would in a second. The thought of someone potentially hurting my boy is horrifying, an ache in my heart that never goes away.<\/p>\n
But I have learned not to let it paralyze me as it often did in his early years, when I tried so desperately to alleviate the severity of his autism so he would live an independent life. All of our therapeutic interventions did not change the fact that he will need constant care for his entire lifespan. I\u2019ve learned to shelve that fear so that it is not always in sharp focus, so I can be present in my life and be the mother I need to be for both my autistic boys.<\/p>\n
I\u2019ve accepted his need for lifetime care. I will never embrace it.<\/p>\n
There are always challenges in our daily life with Justin. His OCD can be daunting, and sometimes he still has aggressive outbursts. It\u2019s not all lollipops and rainbows chez McCafferty.<\/p>\n
But the last few years have been so much better than his earlier ones that I\u2019m often inspired to write about his progress. I\u2019ve been told by readers that I\u2019m na\u00efve, to wait until puberty hits, and wished good luck with the \u201cpost-21 abyss.\u201d<\/p>\n
And maybe they\u2019re right. I say this without \u201csnark\u201d- perhaps when puberty hits it will all go to hell in a handbasket, and my primarily sweet, smart, happy tween will become unidentifiable from the boy we\u2019ve raised in the last few years. Maybe he will turn twenty-one and there will be no good group home placement for him, no quality \u201cday care,\u201d no money for home respite care. Perhaps I will be yelling at my husband to stop working so he can watch our thirty-two-year-old son so I can get my mammogram. Maybe everything will suck.<\/p>\n
Or, maybe not.<\/p>\n
Maybe Justin will have options like my friends\u2019 adult children have had in the past few years. One child is thriving in a group home, in better shape and the happiest he\u2019s been his whole life. A grown son of my friend goes to a daycare center he calls \u201ccollege\u201d and loves it, and lives peacefully at home. Another friend of mine with two adult children with severe autism (yes, she is awesome) has brokered a deal where her two kids get respite care six and seven days a week respectively, are engaged in outings and activities they enjoy, and love their lives.<\/p>\n
And just for the record, the last two examples are of autistic adults living large in Jersey.<\/p>\n
Perhaps some of you are thinking, \u201csure Kim, that\u2019s great for them, but your kid\u2019s in the approaching autism bubble and you won\u2019t have those pretty choices in eight years.\u201d<\/p>\n
And despite all the autism initiatives I read about daily, that might be my son\u2019s fate. It\u2019s too early to tell.<\/p>\n
But even if I am harassing my husband in eight years I will never regret writing about or living these last few years, will never feel I was wrong about encouraging others to have hope. Five years ago we were dealing with daily insomnia, toilet training disasters, refusals to eat, daily aggression, and a host of other incredibly challenging issues that affected not just Justin, but our entire family. I wish I could have known then how much easier life would get.<\/p>\n
I wish I would have believed in even the possibility that life would get easier. I would have been a much happier person.<\/p>\n
I write for several reasons, and to be perfectly honest with you I write for myself as much as I write for my readers. My computer is a wonderful place for me to vent, said venting keeping me from consuming two pounds of chocolate daily.<\/p>\n
Yup, I need my blog for my physical as well as my mental health.<\/p>\n
But I also write for others, in an attempt to pay it forward to other parents, particularly those in the early years of diagnosis who may be feeling bereft of hope. You see, twelve years ago I walked into Barnes and Noble after having dropped off my two-year-old son in his pre-school program, purchased a hot chocolate, and settled into the special needs section. At that point I had read several memoirs about autistic kids, all having the outcome of moving to the mild end of the spectrum or losing their diagnoses altogether. I stumbled upon Susan Senator\u2019s \u201cMaking Peace with Autism\u201d and devoured it, let my hot chocolate grow cold. It was the first book I\u2019d read where a moderate to severely autistic child had made progress but remained on that end of the spectrum, the first tome I\u2019d perused where the family and child were happy despite the severity and the challenges autism presented to them.<\/p>\n
It was the first book that gave me hope that someday my family might be happy too even if my child remained severely affected.<\/p>\n
I\u2019m certainly not comparing myself with the amazing Susan Senator, who remains my \u201cautism rock star.\u201d However, I know my missives have helped others, and I\u2019m going to keep at it. I never want to walk around hollowed out with the fear and rage I felt in the early years. My goal is to be as happy as I can, to have my boys be as happy as they can be too, and to share their successes with all of you.<\/p>\n
I will never give up pursuing safe, productive, and happy lives for them both.<\/p>\n
I will never give up.
\nFor more on my family visit my blog at autismmommytherapist.wordpress.com
\nFollow me on Facebook at Autism Mommy-Therapist<\/i><\/p>\n