January 19, 2016
Keep Hope Alive
A couple of weeks ago I wrote a piece about autism’s gifts for the Autism Speaks blog. As usual they posted the piece on their Facebook page as well, and comments followed. Most of them were positive. Many of the commenters share their own experiences, citing the gifts they thought autism had brought to their families as well.
And there was one comment that just got to me.
“I would like to have an intelligent conversation where we can drop the mask of constantly being happy about this and talk about the things this has ruined for us as well. Mind you, I love my son and would never change him even given the chance. I just want to know that not all parents with Spectrum children are walking robots forced to grin and bare it. I wanna talk about us having mental breakdowns because of the isolation, I wanna talk about the anger and hatred we feel because it genuinely sucks. Anybody can be the eternal optimist, and that’s fantastic. Where are the real parents that have issues like me?
Or am I just a shitty person because I fully understand that this isn’t all smiles, puzzle pieces, and blue light bulbs?”
I get it. I so, so, get it.
I often start my blog posts with a description of the early days with my son Justin, who is severely autistic. I write about the harsh realities of having a young child on the more involved end of the spectrum. I share with my readers about the insomnia that dogged his days. I talk honestly about his aggression when he couldn’t make himself understood. I speak about how difficult life was for him before he could communicate with his PECS book, and later with his iPad.
I write about how he suffered.
I’ve walked the walk that many of you are going through now, watching your sons and daughters struggle. I’ve struggled too (as has my husband), emotionally, physically and financially with the ramifications autism has brought to this family. There were days we were living hour to hour, wishing desperately for a magic pill that would make him happy.
And after years and years of struggle and challenges and pain, we’ve come through to the other side.
And that’s why I mostly write about having hope.
I will never tell another parent of an autistic child that things will get better. Nobody can promise you that, plus everyone’s definition of “better” is different.
But I will say this.
Carry hope with you that your child will improve. Nurture that hope, breathe life into it, make it grow. I say this because a mom of an autistic child once told me a decade ago that each day I should find at least one bright moment and cling to it, hold it close, take it out and remember it at night no matter how challenging the day was. That advice helped me get through a year-and-a-half of doing ABA therapy with my son six hours a day, five days a week. That wisdom helped push me to be a better teacher, practitioner, and parent. That moment of remembrance would comfort me when comfort was not enough to diminish my son’s meltdowns.
That moment of hope would help get me through.
If someone had told me ten years ago that my severely autistic son would eventually eat more than one thing, sleep through the night, communicate with a technological device, be potty-trained, use a few words on occasion, and most importantly, be a predominantly happy child, I would not have believed it.
But today, after years of therapy, consistency, his own maturity, and love, he is all of those things and more.
He loves his life. And we love him.
And sometimes a little hope can go a long, long, way.
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