I stumbled across this piece by Liane Kupferburg Carter on 10 Things I Wish Someone Told Me About Parenting a Child With Special Needs a couple days ago, and I've been meaning to link to it. She personalizes it about autism, but as the parent of a special needs child with a different disease I read each of her "10 Things" with great interest and found much to think about (and agree with).
So here is a snippet for Dana, and for John, and for all the other parents in whatever station of life, with whatever social/political views, who are struggling to do their best for their "special" son or daughter:
So here is a snippet for Dana, and for John, and for all the other parents in whatever station of life, with whatever social/political views, who are struggling to do their best for their "special" son or daughter:
3. People will stare. This will eat at you in the beginning. It's natural to feel uncomfortable, resentful, even mortified. It is also a natural instinct for people to look at anything that's a little out of the ordinary. Your child's quirky behaviors in public may draw attention, and what if they do? Stop worrying about it so much. Who cares what strangers think? And I can promise you this: You will learn to never, ever judge any other parent whose kid acts up in public. Eventually, you will figure out how to handle people's inappropriate questions. I'll never forget how taken aback I was at a wedding 15 years ago when my husband's uncle abruptly asked, "Is there any hope for your son?" Sometimes, people may imply that you just aren't trying hard enough. Or they will offer unsolicited advice or press the latest miracle cure on you. Worst of all, they will talk about your child right in front of him. Don't let them. And don't you do it either. Your child may not be verbal (yet), but his ears are working just fine.And because most people who don't have children like this will not click through the link, here's one more:
8. There will be people who tell you that autism is a gift. Or that God singled you out to be a special needs parent for a reason. Don't believe them. You weren't singled out or chosen. What you are doing is rising to meet challenges, and simply doing what every good parent does: giving your child everything he needs to thrive. My son has many abilities and strengths; he can be warm and funny and empathetic; he has an amazing memory; he's a whiz with video games. But I'm not going to lie: Those early years with him were hard and scary. So is reaching the age of 20. His disability isn't a gift. What is a gift is the joy he and his older brother bring to our lives.
Comments
Dana,
I had no idea you were the Dad of an autistic child. IIRC you are good friends with Corey Bowen who is, IMNHO, one of the finest Autism professionals in the state. My son is 12 and very low functioning so I've plumbed the depths of resources locally and your point about facing facts is a salient one. Odd thing: My son used to get many more stares before he started wearing his safety harness (hooks into seatbelt). Without it he's something of a curiosity. With he becomes nearly invisible.
I have really enjoyed reading through your blog. I think you have some real quality content here along with some very informative posts and strong opinions. I think it would be worth sharing with more people and I believe I could help to get you new readers if you are interested.
I am looking for passionate writers to join our community of bloggers and I was wondering whether you would consider sharing your posts on Glipho and become a member?
It might be a good idea to give your writing and your blog more exposure while having fun and meeting fellow writers.
Please check us out at glipho.com and drop me a line at hubert@glipho.com for any questions.
Best!
Hubert
PDD-NOS was the original diagnosis and he has OCD, epilepsy and for a time, pica.
It has been challenging to put it mildly.