Friday, May 13, 2016

Input/Output: Credit where Credit is Due.

A mom friend recently shared a post that expressed some thoughts on parenting a child with a disability.  The post essentially said, "My kid will be successful because I will make it so."  (I'm paraphrasing.)  My friend said that this rubbed her the wrong way, especially on the heels of a bunch of Mother's Day posts praising those who raise children with disabilities as extra amazing.

Don't get me wrong, I think my friends who are raising kids with disabilities are amazing.  But sorry, friends, I don't think you get to determine your child's success any more than parents of typical kids determine the success of those children.

Here are some lessons I've learned parenting and making a career of work with children.  They're all my personal opinions, but many came from conversations with moms in the disability community.

Doing nothing will get you nowhere.

Okay, so let's start here.  It's a bad idea to ignore your kid, never read to him or her, and just expect them to turn out awesome.  Some kids do, but let's just agree that ignoring your kid is not a stellar plan.

Doing everything is no promise of success.

Guess what?  My kid will never be a great basketball player.  She's been the shortest kid in her class for three years.  I love her.  I think the world of her.  If I spend every day for the next five years teaching her how to play basketball, she will most likely learn the game.  But I can't make her tall.  She won't be a basketball "success" and play Varsity ball or play in college.  She's on track never to break 5' and that's just life.

By the same token, I can pour every resource into my kid but I can't determine how she will respond. Her success is not ultimately up to me, and I can't take credit.  I can try lots of different strategies but I am not ultimately going to make Ellie a "success."

In fact, I can take less credit with Ellie than Caroline.  Caroline is 7.5 months old.  At this age, Ellie had two different therapists working with her weekly.  With Caroline, my husband and I are flying solo (er, duo?).

Your definition of success might be messed up.

Ellie is five.  She can read some sight words and knows all of her letters and sounds, she is working on digraphs and blends, and her speech is beyond many kids with Down syndrome.

The first question is: "Is Ellie a success?"  I'd argue that the above paragraph has nothing to do with whether or not Ellie is successful.  Is she contributing to her community?  Is she in relationships with meaning?  Those determine her success in my eyes far better than a list of attributes.

Your definition of failure might be messed up, too.

Oh, and Ellie cannot draw much that is recognizable.  She struggles to write most letters from ideation (or even trace.)  Her 1:1 correspondence is weak at best.  I don't want to list any more of her struggles here because she will grow up one day and read this, and I want to respect her privacy.  But she has struggles.

Is Ellie a failure?  Have I failed her as a parent?

I don't think so.  I think Ellie has some specific delays that make certain things harder for her.

You see, I know some parents of kids with Down syndrome who have given their kid every possible support, and their kids get cancer, or have autism, or have something making it exceptionally hard for them to meet some random success milestone.  Let's not give ourselves too much credit.  If raising a kid with Down syndrome or another disability makes us a crew of supermoms, what does that say about our kids?

Are they too hard to raise?  Are they burdens?  Impossible to teach?

Let me let you in on a secret.  When I dropped Ellie off for respite care the other day, I said that I felt like I was getting respite for the wrong kid.  

When we make parents of kids with special needs sound like supermoms, we make the kids sound like burdens.

When we make the parents of kids with special needs sound like heroes who make or break the kids' successes, we give the parents too much credit.

Give my kid the credit.  Let me share it.  Let her amazing teacher and assistant and gymnastics coach and therapists share it.  Just like with my typical kid.  She's 7.5 months and cruising.  Guess what?  I have given her toys and tools but I didn't make her ahead in gross motor skills.

Kids are not vending machines.  What I put in doesn't always give me the output I would expect.  (See also: Sleep training failure/Apnea/Low ferritin.)

If Ellie only makes it because I'm her mom, I am doing a grave disservice to my child.  Self-advocacy matters.  Her voice matters.




And she's learning to self advocate.  If you want to test her out, point at her and ask how old she is.  If you really want to test her out, imply that she's a baby.  You'll hear an answer loud and clear.

"I am FIVE years old."



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