I read this post a couple of months ago and I was blown away. I am always looking for ways to be someone who GETS IT. Reading this helped me do that. But it also made me feel feelings: sad, angry, grateful. I want to thank the author of this post so much for allowing me to run it. It originally appeared on Special Needs Reality TV.
There was a mother of a special needs child, Emily Perl Kingsley, who wrote a beautiful story about how having a child with special needs is not what was expected. She compares it to being prepared to go to Italy and ending up in Holland. It’s all about accepting what we are given and seeing the beauty in it. But, I want it to be duly noted, that I hate Holland and the Hallmark platitudes that go with this story. I didn’t ask to go here and sometimes I am kicking and screaming through the whole tour. There are so many wonderful things written about the acceptance and gift of having a child with special needs. While all of this is true, there is very little writing about the anger and denial of dealing with having someone who is atypical. And I’m pretty sure all of us are angry, hurt and bitter at times.
For instance, I can’t stand when people brag about all their kids can do. I’m not going to tell them to shut up but sometimes I just want to punch them in the throat. I am still changing Darling Boy’s diaper and he’s 14. Once I got a letter from our state department of education informing me that Darling Boy tested in the lowest 1% of the lowest 1% in the standardized testing. Nice, right? I don’t care that you’re kid is making straight A’s. DON’T. CARE.
I also hate when people tell me that I’m special and God only gives you what you can handle. I call bullshit on that. While I have a strong relationship with God and know that he gives me the strength to handle everything, really, I don’t think he specially picked ME to deal with this. I’m only doing what’s in my heart and soul as a mother. I will care for and love Darling Boy forever. I am no more special than any other mom. And news flash, there are plenty of kids with disabilities who are given up for adoption. Several years ago in Philadelphia, a young girl with cerebral palsy passed away from starvation under her mom’s care. So let’s cut the myth that special kids are given to special people.
There’s another layer to this anger that I am spewing (and it feels so goood) Darling Boy recently got a diagnosis of muscular dystrophy. He is slowly losing physical skills which started out when he was about 18 months but things have gotten worse in the past couple years. He can’t always sit up and he’s having difficulty swallowing. Think of Stephen Hawking in his wheelchair. He started off with all his physical skills and now is in a wheelchair and using a computer as his voice. He has ALS, a form of muscular dystrophy also known as Lou Gehrig’s disease. We don’t have a definitive diagnosis yet but it is an alphadystroglycanopathy. Duchenne’s Muscular Dystrophy is a type of alphadystroglycanopathy. That is a fatal disease. We don’t know what this diagnosis means and if his time on earth will be shortened. And that makes me pissed off.
So, here’s something to know about your friends who have kids with terrible things happening to them: childhood cancer, mitochondrial disease, mental illness. Just listen to them. Let them rant if they need to. Please don’t say, I don’t know how you do it because we don’t know how we do it either. Try to give them a break, bring a dinner, babysit, take their other kids out on the town. Bring your kids over to play and explain to them how my child just has a different way of communicating. My friend’s daughter has Asperger’s and she can always figure out what Darling Boy is trying to communicate because she can hyperfocus on all his subtle clues. It’s great when she visits.
And here is something that special ed teachers and doctors need to know. If we come into a meeting demanding the world and being completely unreasonable, don’t get defensive and think we are crazy. We are hurting and angry and sometimes we take it out on our team. Please realize that we go through different phases in accepting the diagnosis. And sometimes we’re just a hot mess. Be patient and kind and don’t write us off as the crazy demanding litigious parents. Help us to learn what our child can do, help us believe in the possible because sometimes that’s the hardest thing to do.