Saturday, June 06, 2015

A special sort of difficulty

It's that time of year when kids are graduating, having parties, getting accepted to college -- and parents are proudly posting photos and announcements on Facebook.  That's natural, of course, and it's wonderful and fun to see the kids I knew as toddlers and kindergarteners and goofy elementary school kids looking so adult and launching into the big wide world.

But for those of us with special needs kids, it's a trying, emotional time too.  We're happy for our friends and we delight in hearing about their children's successes.  We understand the pride and excitement and desire to share their kids' accomplishments.  But at the same time, seeing those announcements and successes brings up some sharp and difficult feelings of pain.  They remind us of what our kids aren't yet capable of, of what we wish they could do. We wonder if our kids will ever be able to experience those life milestones.  Some parents know their kids won't ever achieve them.  We know that our kids take a different path, with different milestones.

A while back, I slammed hard into this situation.  I was getting together with a bunch of friends with whom, years earlier, I'd been in a very fun book club.  We'd met when our kids were in preschool together, and we'd met monthly to eat out, chat, talk books.  But as our kids got older and our lives got busier, the book club fell by the wayside. I was so looking forward to the reunion we'd planned. I really, really like these women.  Naturally, the evening involved everyone catching everyone else up on what they and their families were going through.  It was all about college applications and acceptances and scholarships and what kid was dating whom and what career paths they'd chosen.  I sat there, feeling both glad for those wonderful kids and their moms, and struck dumb by how dreadfully it all hurt.  I felt like I couldn't participate -- not that I wasn't enormously proud of my daughter's accomplishments, not that she didn't have wonderful accomplishments. And, to be clear, not one of those women in the room would have judged me or my daughter, or viewed her as "less than" in any way.  It was me, confronting my own pain and jealousy and feelings of grief.  I felt a bit like I was on the far side of a deep gulf, and just couldn't even begin to reach the other side. 

It's tricky, negotiating the minefield of conflicting emotions we experience every day as parents of kids with special needs.  We love our kids. We're enormously proud of them.  We understand how hard they work and how much they tackle every single minute of every single day.  We know how something that looks like a tiny, ordinary thing can be a huge, significant accomplishment. But that doesn't make it any less painful when we see how our friends' and families' kids seem to sail along doing all those normal things that, for our kids, aren't "normal" at all. And then there's the guilt.  How can we NOT feel happy for our friends and their kids?  Does it make us bad parents if we feel sad that our kids aren't "normal?"

Years ago, I read a novel about a woman who died and had to learn about what happened next.  After a series of tasks, she met with her guiding angel, who explained to her that because she'd been so good in her life, she could choose to return to earth in the highest form of being there was, to do the greatest service there could be on earth. It would be a hard path, the angel explained.  But it would give her the most opportunity to teach others and make the world a better place. When the woman agreed, she was reborn on earth as a baby with special needs. 

I think of that often. I think of how amazing our kids are, how much they struggle in ways that aren't even visible to most people.  And how for us, their parents and friends and families, they help us to understand so much at a truly different level. We experience compassion and patience we didn't know we had.  We see people differently, understanding that everyone has struggles that aren't visible on the surface and that we may never know.  We see the world in a different way, too, and end up choosing paths we never expected to travel. We learn gratitude, and how to live in the moment, because sometimes that's all we can do, all our kids can do.  Yes, our kids teach us so much.  And, on our best days, we can help share those lessons and grow.

Which is not to say that every parent doesn't feel and experience these things.  I'm convinced that that's what parenting is about, mainly -- learning patience and compassion and understanding for some separate person that, no matter how much you try to shape them, is different from you.

But for those of us with kids with special challenges, you know what I mean.  It can be easy to forget, especially as we're watching other kids forge ahead.  It's hard not to wonder "why couldn't my child's life been like that?  Why couldn't my life have gone so normally?  Why are things always harder for me?"

So at times like this, I try to remember how lucky I am.  I have an amazing, creative, funny, smart daughter.  She's taken me places I never could have imagined.  She teaches me so much all the time.  Because of all of it -- the pain, the difficulty, the uncertainty, the struggle -- I've become more patient, more tolerant, more open to different approaches and ideas.  Parenting has stretched me more than I ever thought possible.

If you're feeling all of these things, there are places where you can share your frustrations, your pain, and those mega-accomplishments that, to folks with NT kids, would seem like little ordinary things.  There's a great book called "Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children."  It's written by two moms of special needs kids, who write with great humor about the ways things can be tricky and how to cope with them.  And, even more helpful to me, those same women run a facebook group here where parents like me share their joys and frustrations, their tricks and strategies, their good days and bad days.  There's a lot of humor, a lot of help, and most of all, a whole lot of understanding. 


  1. Beautiful words. Thank you.

  2. How beautifully you speak to both sides of the situation. Thanks for sharing this.

  3. Beautiful, thoughtful post, Diane. I hope the writing helped to dilute the sadness a bit. You are the best mother C. could have.

  4. Thank you for sharing. Well said.

  5. Thanks for sharing this so openly. Sometimes it is too easy to glide over situations that hurt without reflecting on it so that you are better prepared to meet things another time - you really address that here.
    Chin up! Sending a big hug to you and your special girl - and to everyone else in the same situation.