Aug
01
2012

[GUEST POST] Parenting Outside the Lines: Wisdom on raising a child with special needs

Guest post by Deborah Reber

Ever since I realized my hub and I were on a not-so-typical path with my son – he taught himself to read just after turning three, was diagnosed with sensory processing disorder at four, and got a provisional diagnosis of Asperger’s two years later – I knew writing about our experience as his parents was something I would eventually do.

But two weeks after agreeing to write this post, I had nothing. Nada.

I emailed Andrea, slightly panicked, to see if she could help me get past my writer’s block and point me in some direction…any direction…so I could get the words down on paper.

“I don’t know if I should be writing this… I mean, I’m still not over it,” I said. “It’s still painful and hard, a lot of the time.”

Of course, Andrea being Andrea told me how perfect that is. That none of us are “over” our issues…that we’re in them, learning from them, moving through them.

“I know there are so many moms reading this blog in your situation,” she said. “Just write honestly about it…you don’t have to have the answers…just keep it real.”

“Okay,” I said. “I can do that. I totally know what I’m going to write now. Thanks!”

Except I didn’t.

The words still didn’t come. I didn’t know where to begin. I started a half-dozen drafts, all crap, and walked away from my computer, hoping my muses would plop an idea into my head.

So today, I tried something different. Instead of thinking about what to write, today I started thinking about why I wanted to write it. And that I knew. I wanted to write this post because being the parent of a special needs kid can be lonely and isolating. On bad days, it can be all too easy to slip into despair and think that no one else gets it…that no one has it as hard as you…that it’s always going to be difficult.

So instead of telling my story (read: boring) or crafting some how-to piece on navigating the world of getting services and advocating for your kid (too pragmatic), I decided to write about what I wish I’d known when I first realized my son had his own agenda, his own rulebook, and his own idea about how this mother/son relationship was going to play out.

Here are some of those hard-won words of wisdom.

I would want to know that my son’s neurological differences aren’t the result of something I did to fuck him up. It’s not because of the kabillion units of pitocin in my system when he was born or the fact that I was stressed with a work deadline during his first three months or that I ditched making homemade organic food in lieu of canned baby food in an attempt to regain my sanity.

I would want to know that my son is who he is because that’s who he’s supposed to be. That there are no accidents. This is his path, his life, his soul journey. It’s perfect because it’s how he came into the world for what he needs to get out of this lifetime.

I would want to know that it’s no use trying to get people who don’t get it to get it. Those people who brush off your frustration (Oh, all seven year olds are willful!) probably won’t ever understand that your child’s intensity is on a whole other stratosphere. And really, who cares? Why does everyone have to understand what you’re going through? Focus on the friends who get you and your situation and lean on them.

On a related note, I would want to know that the sooner you can let go of the idea that our children are a reflection of our parenting the better. For control freaks like me, this one is toughie. It’s the one I keep coming back to, each time I find myself worrying about what someone else thinks of my son and his behavior, and consequently of my parenting. Repeat after me: I respectfully don’t give a shit.

I would want to know that it’s normal to experience unattractive emotions like jealousy, especially when seeing friends who get to have a more typical relationship with their child. On bad days it’s easy to look around you and assume everyone else gets to do normal happy kid stuff and feel just a little gypped. On those days, don’t judge the jealousy – just acknowledge it and let it flow through you. It’s just an emotion based on crappy thinking. It’s not who you are.

I would want to know that self-care is not just something to aspire to. It’s a way of life. Taking time for yourself to exercise, be alone, be with friends, meditate…recalibrate, is the only way you can show up to parenting your kid. It’s the glue that holds it all together.

I would want to know that parenting a kid who doesn’t fit inside the lines is really hard. And it’s unbelievably amazing. And the hard moments, the ones that make you want to just pack your bags and walk out the door, are cancelled out by the moments when your child’s unique way of experiencing the world takes your breath away. Focus on the latter.

Lastly, I would want to know that it is what it is. And that arguing with reality is a complete waste of time. And that letting fear or worry or frustration rule your decision-making takes the trust out of the equation.

Know that it is all unfolding exactly as it should. Know that you are supported by the universe. And keep coming back to those beliefs. Whenever you need to.

Debbie is a writer, life coach, speaker, teen advocate, editorial consultant, media maker, creative consultant, wife, mother, daughter, sister, runner, wannabe Broadway singer, dog lover, and friend. She lives in Seattle, where spends way too much time discussing the weather, eating gelato, and exercising with her friends. Her passion is supporting teens, twenty-somethings, and creatives in doing their thing with clarity and awesomeness through her coaching and writing. Visit her online at www.debbiereber.com to find out more. And sign up for her newsletter while you’re at it to grab a copy of her new (free) ebook, “What Smart Girls Know: 10 Truths for Discovering You.”

 

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12 talking about this

  1. What a beautiful and honest post Debbie! It was so worth you going through the drafts figuring out what to write. It will help so many people, (like me) who may not have your particular challenge, but have it in other areas of life. All the lessons apply! Big hugs.

    Pamela Slim wrote on 8/1/2012 - 5:52PM | permalink
    • Thank you so much for your kind words, Pam! Hugs received :)

      Debbie Reber wrote on 8/1/2012 - 6:23PM | permalink
  2. Thank you reading this helped alot and helps to know we all nit alone in feeling this way nikki

    nikki wrote on 8/1/2012 - 8:19PM | permalink
    • Thanks Nikki. So glad this landed with you. None of us are alone! XOXO

      Debbie Reber wrote on 8/2/2012 - 3:48AM | permalink
  3. Brava, Debbie! So beautifully written.

    Emily wrote on 8/7/2012 - 10:24PM | permalink
    • Thank you Emily … so grateful to have you in my corner :)

      Debbie Reber wrote on 8/8/2012 - 8:49PM | permalink
  4. Debbie,
    What an eloquent, honest and insightful post. I think there is something in this article for EVERY parent and I’m sure it took a lot of courage to say all this, but I’m so glad you did. Well done and thank you for your brave writing that may help us all!!

    Victoria wrote on 8/8/2012 - 12:14AM | permalink
    • Thanks for much, Victoria :) I’ve heard from so many parents of “typical” kids (meaning not special needs) that this landed with them too… Parenting is not for the faint of heart!

      Debbie Reber wrote on 8/8/2012 - 8:50PM | permalink
  5. Great post, Debbie. Thank you! You are such an inspiration.

    Maria wrote on 8/8/2012 - 7:44AM | permalink
    • Thank you so much, Maria XO

      Debbie Reber wrote on 8/8/2012 - 8:52PM | permalink
  6. Pingback: The Fear & the Freedom of Getting Personal | The Wayfinder Post

    • Hey Debbie,
      As a father to a high functioning child with autism I realized there was a time where I was in denial. Sawyer is almost 6 and the most amazing kid. I am a sports nut and of course I planted the seed. I had to back off a little because I also want him to be well rounded. We all have these dreams for our kids and I had visions of Sawyer really excelling in sports because he had that passion that it takes. Then we started him in organized basketball where the year before it was all indivisual. He was one of the best the year before when it was on his terms. But once the team aspect part came next year he was all over the place. I was so sad for all the wrong reasons. Through my wife and his therapy coach did I realize how I was going to grasp this. Keep the expectations low and have Sawyer more into sports like swimming, running, and maybe wrestling.
      Well in the meantime we have not disregarded the team sports because there may be a chance that he will be able to figure out in his own way how to function in group related activities. He played baseball this year and did awesome!! He can hit pitched balls, and run the bases, throws pretty good, but the hand, eye coordination for catching will take time.
      God has a plan for all us great parents of special needs children. There is a reason why he picked us. My Sawyer has made me a better man!!!

      Todd Princl wrote on 8/28/2012 - 4:29PM | permalink