This guest pos is by Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). The Regional Autism Center at CHOP is a member of Autism Speaks Autism Treatment Network.
A few weeks ago I wrote a piece about autism’s gifts to my two boys on the spectrum. I received many comments regarding the post, most of them positive. Many of the commenters shared their own experiences, citing the gifts they thought autism had brought to their families as well.
And there was one post that just got to me.
The commenter talked about loving her son, and not wanting to change him. She also described how isolating autism can be to families, and how angry she was sometimes.
She closed her comment with asking where the “real parents” were who had issues like her.
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.