There is a 'last time' that only parents of special needs kiddos know about. And it is heartbreaking. For years I kept telling myself this was going to be fine. My son was going to be fine. And the joy he has for life typically carries me through the hard times. But somewhere on the journey, we as parents stop dreaming of raising a doctor or a lawyer and start hoping for a good quality of life. And that switch is unbelievably painful and I wasn't prepared for its impact. #autism
Posted by Finding Cooper's Voice on Monday, March 6, 2017
When our children are born we spend time dreaming of their futures - will he be an artist, will she be a doctor, will this baby be in the Olympics? For one mom of a child with autism, these dreams of her son's future suddenly "switched" one day to a more simple one: that he'll have good quality of life.
In addition, Kate shares that though all parents can relate to experiencing those "last times" with their kids - the last time you pick them up, the last time they nurse, etc. - parents of children with special needs go through a particularly difficult and unique "last time." In a video posted to Facebook, Kate delivers a heartbreaking realization that she had about her son, Cooper, who was diagnosed with autism at 3 years old: "There is a last time that you think, 'This going to be OK.'"
Through the full seven minutes of the video Kate struggles to keep her composure as she talks about life with Cooper, but continues to bravely and honestly share her story with other parents - especially her fellow autism parents - to shed light on what it means to have a child with severe autism.
My son has severe autism. And I cried the whole way to work today because somewhere in the last couple of months I switched from praying that he would be a doctor or a lawyer and now I just know that we're praying for quality of life. And that is such a hard switch because you hate yourself for giving up hope, but it is the fact of the matter. He could be the one in a million, but he's not. And I know that his joy is supposed to be enough - it is a lot of the time, it really is. But last night I laid in bed and thought about his funeral and if I'm gone, and what if no one goes? He's not going to have anyone.
It's just really hard. I'm not a religious person really, but I did the thing where I let my guard down and I talked to god and I said, "I'll do anything if you just fix him, or help him," but that doesn't do anything. It really doesn't. For so long I kept thinking it was going to be OK. I knew he wouldn't have some big career . . . it's OK if he's a loner, it's OK if he's happy fixing bikes or working on trains. I don't care, I just want him to be happy. And most of the time that is enough - I want you to know that. It's enough, as a mom, to know that he's truly happy. . . .
I sat down last night after a day of dysregulation and hitting and kicking, and I just thought about when I made that switch from being a blissful, happy parent to thinking about the future in a completely different light. It's brutal. It is effin' brutal.