Saturday, April 09, 2011

Don't be such a baby.

I recently discovered a blog about parenting a child with autism, thanks to an old friend of mine, and I really enjoy it.  It's upbeat, positive, a loving portrait of living with two children on the more severe end of the spectrum.  

She doesn't candy coat it, but she's focusing on the positive aspects of the challenges in her life.  It's not the nail biting, soul searching, angst-ridden musings of a neurotic that mine is turning about to be.

One day I was reading her blog, and smiled at something her kids did.  I scrolled down to read the comments. Comments can be so insightful, supportive or even controversial.

One comment said something like, "I love your blog, it's so positive.  You're not whining like so many other people."

Whining.  Whining?  Whining.

This comment blew. my. mind. 

Would the commenter have told an Iraq war veteran with posttraumatic stress disorder to stop whining?  Suck it up, man, and grow some balls already?

Do you tell the parent of a child who has died to just get over it?  To stop obsessing about it, and to move on already, we're sick of your crying?

Of course not.  Look, autism changes your life, irrevocably.  Inevitably.  It can change it positively or negatively. Most times, both.  It's never what you expect. And each person’s perception and experience of it is different and unique. 
Communicating the hardships of raising a child with autism isn't whining, dear commenter.  It's important that you recognize the challenges of raising a child with autism so that when someone asks you for help, you'll know why. 

So when you're asked to support legislation and tax-funded services to help these families, you'll know why. 

So when an individual with autism comes to you for a job interview, you’ll be understanding and patient.

It’s important to be aware, so when a parent of a child with autism has to leave work early because the school called (again) about yet another crisis, you’ll be sympathetic and not resentful.

So when you meet someone with autism who is behaving oddly or even aggressively, you'll know why.

And hopefully once you know why, you’ll care enough to try to do something to help.


anilia said...

Right on. I wish we would all try to put ourselves in the shoes of those people we would judge. I've been thinking ever since you wrote a while back how amazing you are for staying, for loving, for continuing to be the best mother you can. Everyone needs a place to say exactly what they feel.

Unknown said...

Thank you so much for saying what so many of us want to say! Having twins on the spectrum has been an amazing experience. However, talking about the good the bad and the challenging helps get you thru your day. Don't we all do that? Those that don't get it will never get it, and they have missed getting to know some incredible people!

J.H said...

Lisa here,mom of a 7 yr old boy with autism(PDD-NOS. this post is wonderful perspective....I have shared this with others in hope they take a moment to read,too.
I think it is an important message for everyone,esp those who don't quite"get"what families of these unique individuals deal with.

Much thanks,

Valerie said...

That is the most ignorant comment I have ever read. It is obvious that person has led a very sheltered life. She must never has had to struggle, never had her hopes and dreams crushed on a daily basis, never experienced intense chronic emotional pain, or has never felt isolated in her life. Nor has she ever experienced the love and joy a mother feels when her autistic kid makes a breakthrough, starts to talk, communicate and ultimately return reciprocate her love. That is pure 100% joy that she will never know.

Valerie said...

Besides, it is important for other families with children on the spectrum to read your blog --> it helps others not feel as isolated. Everything you write is EXACTLY how I feel, and is so reassuring and comforting to know that I am not the only one that has a child with those problems. It makes me feel like such an inadequate parent. And to know there are others out there in similar situations helps put it in perspective, and I can be easier on myself, and accept my struggles a little bit easier and with more grace. Thanks Alisa.