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.

Monday, August 26, 2013

In Which I Lose My Cool...

So, I'm sure you know about the hate-filled letter some coward wrote to the mother of an autistic teen.  When it came across my Facebook feed last week, I read it with a sense of shock.  I couldn't believe someone this cruel existed. 

Here's the letter.  Take a moment to read it.

At first, I wasn't going to address this.  Anyone capable of writing such filth obviously has mental problems.  You don't have to parent a special needs child to know this.  In addition, I wasn't sure what I could add to the conversation.  Several people have already expressed their outrage and their writing captured my feelings beautifully.  So I planned to let it go. 

But I couldn't.  Days passed and I kept thinking about the family that received this letter.  People, let me be frank here.  It's hard enough to raise a special needs child without having to deal with crap like this.  We have never encountered such outright hatred as this with Grace, but we have experienced our share of comments, stares, and tiny cruelties.  And it hurts.  Every.  Single.  Time. 

I had to respond.  And while I generally try to keep things positive, this time I couldn't. 

Dear Pissed Off Mom,

Maybe in your perfect world, no one ever gets sick.  No child is ever born with physical/mental issues.  No one ever gets hurt or loses their job.  Everyone skips along, flowers sprouting in their footsteps and rainbows haloing their heads.  I'm sure your children are perfect and have never done anything to irritate anyone.  They are angels, because after all, you have set a beautiful example of love and acceptance. 

However, in the off chance that your world isn't perfect, let me give you some advice.  Keep your stupid to yourself.  Just like the mother of the boy you target, YOU chose to live in a neighborhood with other people.  People, whose lives--unlike yours--might be a little messy. 

So, since you obviously don't know how to interact with Normal human beings--you know, people who instead of kicking someone when they're down, offer a hand up instead--let me propose a solution to your problem.  YOU move.  Pack up your perfect life and your perfect family and move to that magical place where children are born without problems and everything is sunshine and lollipops. 

But just in case you can't find that Nirvana, why don't YOU park a trailer in the woods.  That way you'll never have to interact with anyone outside of your definition of "normal".  If the trailer in the woods idea doesn't appeal to you (and I have to agree, it is a bit extreme), let me suggest a neighborhood where the lawns are perfectly manicured, the children always well behaved, and the wives are always beautiful.  It's called Stepford.  Look it up.  I have a feeling you'll fit right in. 

Wednesday, August 21, 2013

Are You Crazy?

This is the response we get from most people when we tell them we're adopting again.  Or that we have a new dog.  (That's right--we have 3 now.)  Or pretty much anything else we do that's a little outside of the box. 

I'm guessing some of you get the same response whenever you set out on a path that deviates from the norm.  And you know what?  That's okay.  If you're anything like me, the best things in your life have been the things you never thought you'd do.  Things you thought were out of reach.  Things that to everyone else seemed crazy. 

But that's the beautiful thing about life.  We each get our own.  We get to decide what we want to experience.  Where we want to go.  What footprints we want to leave behind. 

When I was in college, I decided to major in English.  If you knew me, this wasn't a surprise.  I was the kid who always had her nose buried in a novel.  My favorite Christmas presents were new books.  However, when I decided on my major, I got the same response from almost everyone.  "What are you going to do with that?"  (BTW-twenty years later, that response hasn't changed.  My students still get that.  This makes me Sad.)  I didn't tell them that I wanted to be a writer.  "Coming out" as an English major who didn't plan on teaching high schoolers was hard enough.  

So I kept my nose down and spent several years loving what I studied.  I read Shakespeare.  Whitman.  Austin.  I mingled with other bibliophiles who were crazy enough to pick a "useless" major.  After all, if you can't make money from it, it isn't worth anything, right? 


I view life as a series of experiences.  Maybe it's all the time I've spent in the hospital, thinking about my own mortality, but I don't want to get to the end of my life and realize I played it safe.  I want to be worn out by life.  I want to wring every last drop from it.  I want to love hard and cry hard.  For me, that means doing something when I'm moved by a child who needs a home.  Even if that child is a little "different."  Even if I already have four kids at home. 

We are all passionate about different things.  For some, it's the environment.  For others it's art.  For others it's poverty or homelessness.  Whatever it is, I believe we need to embrace those pieces of us that seem a little "off" to others.  When we do so, we make the world a better place.  The beautiful thing about it is in the course of doing so, we realize our full potential.  There is great peace in this.

So the next time someone says, "Are you crazy?" when I tell them we're adopting again, I'm going to smile and say, "Yes.  I am." 

Monday, August 19, 2013

On Being "Real"

A few days ago, my youngest son, Caleb, asked me to read him a story before he went to bed.  Reading before bedtime was something we did regularly when the kids were younger, but then they grew up and decided that they were "too old" for bedtime stories.  So, when Caleb asked me to read to him, I happily said, "Yes!" 

Then I did something I wasn't sure he was going to like.  Instead of choosing one of his chapter books, I decided to re-read the stories I read to him when he was little.  I want him to know why I say, "I love you to the moon and back."  Or where this song comes from: "I'll love you forever, / I'll like you for always, / As long as I'm living / my baby you'll be."  I have great memories of reading him (and my other kids) these books and I wanted him to be old enough to have his own memories of the books. 

I decided to start with my all-time favorite children's book, The Velveteen Rabbit.  If you've never read the book, it's about a stuffed bunny who is so loved by a little boy, that the bunny becomes real.  I have loved this book since I was a little girl.  In fact, when I was pregnant with my oldest son, Zach, my mom and I were out and found a beautiful copy of the story at Walden's books (that shows you how long ago this was.)  It was the first book I bought for him, and I read it to him when he was still a baby. 

We snuggled up on the couch and I started reading.  Pretty soon, my oldest son, Zach (who had said that at 10, he was too big for this) sat down on my other side.  As I read, he lowered his head to my shoulder. 

At least five years had passed since I last read this story.  I was in my forties this time, instead of my thirties.  My boys are now interested in Mine Craft and Power Rangers instead of Pooh Bear and Thomas the Train.  I wondered if the book had lost some of its magic the way clothes you loved a few years ago seem silly when you pull them out of your closet now. 

I was only a few pages in when I realized the magic was still there.  In fact, I saw things in this reading that I had never noticed before.  In the following passage, the velveteen rabbit asks the skin horse how toys become real:

"Real isn't how you are made," said the Skin Horse.  "It's a thing that happens to you.  When a child loves you for a long, long, time, not just to play with, but REALLY loves you, then you become Real."

"Does it hurt?" asked the Rabbit.

"Sometimes," said the Skin Horse for he was always truthful.  "When you are Real you don't mind being hurt."

"Does it happen all at once, like being wound up," he asked, "or bit by bit?"

"It doesn't happen all at once," said the Skin Horse.  "You become.  It takes a long time.  That's why it doesn't often happen to people who break easily, or have sharp edges, or who have to be carefully kept.  Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand." 

Some of my hair has been "loved off", my joints are stiff, and I switched to bifocals last year.  When I look in the mirror, I see lines that weren't there a week ago.  I have more scars than I care to count.  Yet I'm happier now than I ever have been.  I am becoming Real. 

You see, Real isn't only for toys.  It's also for people.  But like the velveteen rabbit, you don't become Real all at once.  It only happens after you've been battered around a bit by life.  When your mother dies.  When you get sick and there is no cure.  When your child is crying and the only thing that helps her is a hug from you.  When you're up to your elbows in mulch and your little boy tells you you're beautiful. 

Most of the time, becoming Real doesn't happen when you are young and beautiful and can run without your knees aching.  It happens after life has rubbed all of your sharp edges down.  And that takes time.  In our culture, we value shiny and new more than Real. 

I think about this a lot now that we are adopting again.  The children we're adopting are a little older.  They have medical issues.  One of them is paralyzed from the waist down.  Life has already battered them around a bit.  I haven't met them yet, but I suspect that they are already well on their way to becoming Real. 

They are children most people overlook.  Most of my children are.  And yet they've helped me more on my journey to become Real than anything else.  When I was younger, I never dreamed I would have six kids.  Even more so, I never dreamed that five of those six kids would have "special needs".  (Actually, since my biological son was 10 weeks early, he'd probably be classified as special needs too.)  Like most people, the term "special needs" scared me.  I thought there was no way I could handle a child with Major special needs. 

Now I know better.  Now that I'm further along on my journey to becoming Real, I realize we all have "special needs."  Some people's needs are just easier to see than others.  If there's one thing my children have taught me, it's that we're all the same inside.  It's only the packaging that's different.  As the Skin Horse said:

"But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand." 

Sunday, August 18, 2013

Introducing Percy!

Meet the newest member of the Knipper clan, Percy!

Percy is 3 or 4 years old.  We think he's a mix between a rat terrier and a cattle dog.  He's the sweetest thing ever!  He curls up next to me when I'm writing and just loves everyone.  Dogs, cats, people, it doesn't matter.  Percy loves them all.  He even walks on his hind legs.  It's the funniest thing. 

All of our dog's have literary names, and Percy is no exception.  He's named him after Mary Oliver's dog, Percy.  As you probably know, Mary Oliver is one of my favorite poets.  She wrote a series of poems about her little dog, Percy.  Below is one of my favorites.  Enjoy!

I Ask Percy How I Should Live My Life
Mary Oliver

Love, love, love, says Percy.
And hurry as fast as you can,
along the shining beach, or the rubble, or the dust.

Then go to sleep.
Give up your body heat, your beating heart.
Then trust.

Thursday, August 1, 2013

My Confession

I don't watch a lot of TV.  Not because I have something against it, but because I simply don't have a lot of free time.  Four kids.  Two dogs.  Two cats.  Writing.  Sometimes get the picture.  Days can (and often do) go by where the TV sits quietly in the corner, waiting for someone to turn it on.  Just last week, the cable guy came by to check something--the box? the TV? I don't know--and was stunned into silence by the sight of our dusty old box TV. 

"So, you all haven't upgraded to a flat screen..." he said as if our American citizenship was now in question. 

However, despite my disconnect with the favorite American pastime, some shows suck me in.  Hello Walking Dead.  And Downton Abbey.  And...Project Runway.  I love this show.   Maybe it's watching the creative process with a visual spin.  Writing isn't tangible, but sewing is.  Often when I'm struggling with a difficult novel section, I do something creative that's tangible.  Drawing.  Painting.  Um, sewing...

A stuffed cat I made Zach for his birthday

And it helps me refocus.  Or maybe I like watching someone else suffering working to create something and finally pulling it off. 

But I suspect that while both of these reasons factor into why I like the show, I have to confess that Tim Gunn plays a huge role in the reason I like the show.  I am an unabashed Tim Gunn fan.  Every writer knows how valuable it is to have someone look at your work and give you an honest, yet kind, critique.  One of my friends calls it a gift.  Tim Gunn is brutally honest (remember the episode where he said, "Jackie Kennedy would not have camel toe?" Um yeah. Brutal.) 

And yet, his comments are never said in a way to demean the designer.  They are always meant to push them on to do their best work.  That is a great kindness.  It reminds me people I've worked with in publishing.  My agent and editor both tell me when something isn't working in my writing.  And I'm grateful for it. 

Two things I'd tell beginning writers are: 1) seek out people who will be honest with you about your work.  And 2) realize that these people are not trying to hurt you.  They are trying to make you a better writer. 

I've had students who can not get past this point.  They see every suggestion--every single one--is a personal attack.  When the truth is, people who have taken the time to review your work and honestly critique it are trying to help you.  (Sure, not everyone.  There are jerks out there.  But learn to tell the difference.  Surely not everyone is out to get you.)  Most of the time, those students will struggle to keep writing, or give up altogether.  And I hate that. Because one of the best things you can do as a writer is learn to step back and breathe when someone tells you something isn't working in your manuscript.  Then channel your inner Tim Gunn, and Make it work.