Wednesday, August 28, 2013

Sometimes it's Lonely

Happy Grace!

The other day I lost my cool on Pissed Off Mom.  I've been thinking about why this woman's letter hit me so hard, and I think I have the answer.  Most people can probably guess that raising a special needs child is hard.  I mean, Grace is nine and still in diapers.  It doesn't take a rocket scientist to figure out that that's no fun.  But what people may not realize (and what this letter drives home) is that raising a special needs child is isolating--and often, that's the part I struggle with the most. 

You see, when Pissed Off Mom wrote that the family should move away from everyone else, what she probably didn't realize is that the family on the receiving end of her "advice" is already alone.  They might be physically around others, but as this letter proves they are socially isolated. 

Life changes when you become a parent.  It gets divided into BK (before kids) and AK (after kids).  Other parents understand.  You can tell another mom, "I just want to go to the bathroom by myself!" and she will understand.  You can say, "If I hear that d*$n Johnny Test theme song one more time, I will shoot myself!" and they're right there with you. 

You can also say, "I had no idea I could love another person so much," and other parents will nod knowingly.  Or "My son told me that so and so picked on him today, and I cried myself to sleep because the hurt on his face broke my heart", and they'll cry along with you. 

But it's different when you have a child with special needs.  Parents of "normal" children don't understand the depth of pain you feel, or the hopelessness, or the shear exhaustion.  If parenting was a sport, parenting a special needs child would be the Extreme version of the sport.  Not only because it's physically difficult, but because other people just don't get it.  And truthfully, it's not their fault.  They can't understand what it's like to raise a special needs child any more than someone without children can understand what it's like to be a parent. 

Unfortunately, that lack of understanding often comes out in their comments or actions.  I've never received a nasty letter about Grace; but children often hide their faces when she walks past.  Adults make hurtful comments right in front of Grace (or me).  It stings. 

Kids run away when she tries to "play" with them.  (Yes, her version of playing is different.  Mostly, it involves standing beside other kids and flapping her hands.  But it would be nice if she could be included somehow.)  Grace is never invited on play dates.  No one ever knocks on the door and asks to play with her. 

When Grace was little, it was easy to visit other people's houses.  She couldn't pull things off shelves and stuff them in her mouth.  She couldn't rip up books or throw food on the floor.  Now that she's only a few inches shorter than I am, she can do all of that and more.  As a result, we don't hang out much with other people.  Sometimes, others think we're being aloof, when the fact is sometimes it's just too hard. 

I can't take Grace to the pool because watching her along with my other kids is almost impossible.  I can't enroll her in dance or gymnastics or cheerleading.  We can't sit at bonfires with family/friends because Grace will pull sticks out of the fire.  It's just too hard to keep her safe, so we stay home.  That it gets lonely. 

By far the worst are the comments.  People throw around the word "retarded"and laugh as if they've made the best joke in the world.  People yank their children away from Grace as if she is "catching".  People offer to watch our "normal" children, but say they can't handle Grace.  (Grace is a handful, but please, don't differentiate between my children.  I love them all.  It hurts when you separate one out.  If you can't watch Grace, don't offer to watch any of them.)   

The worst was a teacher who complained about mainstreaming special needs into her classroom because it meant she didn't have enough time for the kids who would "actually learn something".  (Grace isn't mainstreamed.  Her needs are too extreme.  She's in a special needs class.  But I know several kids with special needs who are fully capable of learning in a traditional environment.)  Dear Ones, I was standing right next to this woman.  She knew Grace, and she Just Wouldn't Stop. 

There are the comments from strangers.  Stares when Grace is drooling.  Frowns when she grabs something off a shelf in the grocery store. 

A waitress who asked (in front of Grace--she can't speak, but she understands everything), "What's wrong with her?" 

The times we are seated in the back of a restaurant next to the kitchen because it will be more "comfortable" for our daughter.  Really?  Getting whacked by the kitchen door when it swings open isn't my idea of comfortable. 

People who say there are "homes" for kids like Grace and we should think about them because it's not fair to us to be stuck with a kid like her.  Who said life was fair?  And she's my daughter.  I'm not stuck with her.  I love her.  I love that she's in my life. 

People make a big show of wiping their hand on their jeans when Grace grabs their fingers. (She grabs everyone.  Sometimes we're not fast enough to stop her.) 

People who have told us that because we adopted Grace (instead of giving birth to her) that we brought this on ourselves.  Sigh.  I still don't have a response for that one. 

My point in writing this is not to hurt anyone's feelings.  I really don't think (most) people are malicious.  I think most people are operating out of plain old ignorance.  They just don't know what they're saying/doing hurts.  But it does.  And just like the letter Pissed Off Mom wrote, it's isolating. 

We're luckier than most.  We have great friends and family members who welcome Grace with open arms.  Most people have never been anything other than wonderful to Grace.  But, there are others, and their comments hurt.  Every.  Single.  Time. 

I'd like to ask three things of everyone reading this post: 

First of all, if you know someone raising a special needs child, reach out to them.  And not only you, but have your children reach out to the special needs child.  It's a domino effect.  If your children see you interacting with a child who is "different" then they'll be more likely to do so themselves.   I promise you, in doing so your children will learn that different isn't scary or bad, and they will become better people. 

Second, think about the words you use.  I'm not the correctness police.  I don't want people walking on egg shells around me and my family, but I do wish people knew how much their words hurt.  Think about it.  There are things you would never even dream of saying to someone of a different race or ethnicity.  Not because you're walking on eggshells, but because you're a decent human being, and you don't want to hurt someone.  It's the same thing for special needs families. 

And finally, share this post with others simply to raise awareness.  Raising special needs kids is hard. A little kindness can go a long way toward making this lonely journey much easier.