I Effing Hate Holland
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. 
Thank you for listening to my rant.
Citations for Photos:
Special Needs Reality TV 
Thank you so so so much for writing this. You said it so well. I usually scream it inarticulately, and then cry.
The part about God only giving us what we can cope with is one I suffer a great deal here in Catholic Sicily. Maybe it’s easy to believe in God if he’s never let you down or played such a mean trick on you?
Since my kid has much milder problems than yours (and I send you both a huge hug) I get endless trite advice from smug parents whose child prodigy has been learning the violin since they were 4, convinced that I too could could cure my son of Aspergers syndrome and learning difficulties and have a genius of my own if only I did what they do. I tell them that if they had to look after my son for a week they would probably have a nervous breakdown.
Ah, that little rant did me good!
You may want to read either of these blogs written by good friends of mine. The domestic goddess, I’m not sure of her url and starkravingmadmommy.com. They also live that life and can be pretty hilarious about the day to day stuff.
Thanks for those suggestions. Found the stark raving mad mommy – I like her already!
I searched for Domestic goddess but found lots of real domestic goddess types, who tend to irritate me…. grrr…
She changed it to the thedgoddess.com.
Thank you! 🙂
You made me,cry because you expressed what I feel a lot 9f the time. I ABSOLUTELY ABHOR THE ST A TEEN GOD GIVES YOU WHAT YOU CAN HANDKE,AND ALL THE OTHER FIDDLES YOU MENTIONED.You vindicated me ,and I know I am not alone ,and that felt so comforting .I hate F $%king Holland Too !
I was really fed up with the whole “you must be special” trope. I’m glad it made you feel less alone because it is so much harder when you don’t have some support even if it’s in the cyber world.
Spew away Moms and Dads! Find someone to listen. It’s cathartic and energizing!