Wednesday, January 7, 2015

Special needs parenting is…. What word comes to mind?

The other day, I was on the phone with the insurance company calling about an AWOL payment for the eighth (yes, eighth) time. Maddening, yeah, but I wasn't giving up.

Determination. That's a defining word for my special needs parenthood experience. I've always had a decent amount of it, but now I've got determination on steroids.

I've been determined to get Max the services he needs
Determined to not take "no" for an answer
Determined to choose good and caring doctors and therapists
Determined to make sure he gets a great education
Determined to guide him to do his best in school
Determined to make sure the experts in his life best help me to help him
Determined to find programs and resources
Determined to find products, tools, devices and tech to enable him 
Determined to make him feel good about his abilities
Determined to get him excited about—and engaged with—the world around him
Determined to open his eyes to new experiences
Determined to instill in him as much confidence as possible
Determined to help others see just how awesome he and other kids like him are
And, of course, determined to keep him happy. 

In the first years of Max's life, I often felt hopeless, bewildered, sad and grim. Being driven to help Max however I could gave me purpose, focus and strength. Determination kept me going back then, and still powers me through parenthood (along with iced coffee). And Max, well, he's my determination role model. Because no matter what challenges the cerebral palsy poses for him, he's gung-ho to figure out ways around them, and to keep right on trying.

So, which word most defines special needs parenting for you?

Special needs parenting is….


  1. It's probably lame but my word is love. I have to love my kids, especially my son who is not always going to love me back, outwardly anyway.

  2. New, everyday I learn something new about my daughter and her abilities, she amazes me everyday with what she can do. This helps me focus on the positive and forget about the negative aspects of cerebral palsy.

  3. I think it's "resourceful." Parents are the best lifehackers. I have found that caffeine helps me focus on tests, so don't judge my mom for allowing me to have coffee at a young age.

  4. Advocacy. Parents are the best advocates for their kids. I like that you said you are "determined to make sure the experts in his life best help me to help him." But there's also an important other side to that. You are the expert on Max. An SLP may be the expert on language and communication. His teacher may be the expert in his educational progress. And the list goes on and on. But YOU are the expert in all things Max. And you play such an important role in sharing your perspective and helping all of those experts best meet Max's needs too. Special needs parenting is advocating for your child and what they need, because you know that better than anyone.

  5. For me it is hope. I always have hope--even when I don't know what the hope is for.

  6. I would say advocate for my mom. She is my greatest advocate has been since day 1 when I was an itty bitty micro preemie in the NICU to now almost 17 years later. She has told me she is my greatest advocate and always will be no matter how old I get. She has been so determined to getting me(and my sister) the treatment, services and care we need and deserve. When I was entering kindergarten, the CSE director didn't want to give me a FM system saying my hearing loss was "too recent". My mom fought and I got it and still have it. Even though I am now advocating for myself, I know she's right beside me, helping me every step of the way. When I have kids(w/ special needs or not) I hope I am half the advocate she is. My life wouldn't be the same if she didn't fight for me.

  7. I relate to ALL of these words. Over on Facebook, so far people have listed "Hard," "Priceless. Because no one would do this job for for money. And no money would ever be enough." "Exhausting (at least today it was)!!" "Time-consuming," "Transformative! I'm not who I was before having Julia, thankfully!" "Strangely rewarding" and "Enlightening," "Challenging!! but worth it!" and "Life-changing...for the better!"

  8. Different - difficult, expensive, heartbreaking, exhausting, but also heartwarming, eye-opening, amazing, special, sweet, rewarding, and enlightening. Even though it has been a much different path to parent my special needs child than parenting my typical kid, I wouldn't change one thing about my sweet Amazing Gracie. She is perfect just the way she is. <3


Thanks for sharing!

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