Monday, December 11, 2017

What you don't know when you become a special needs mom

Yesterday was Max's 15th birthday. Fifteen years of the cuteness, brightness, determination,  stubbornness, brightness, charm, curiosity and cheerfulness that is Max.

When he had a stroke at birth, I was traumatized. When doctors gave us dire predictions about his future, I despaired. When Max had developmental delays, I was worried sick.

I couldn't have known so much back then: about him, his future and the kind of parent I'd be.

I couldn't have known that having a child with disabilities wasn't the end of the world—it was an opening to a new one.

I couldn't have known that those doctors did not know everything. Yes, Max would grow up to have some physical and cognitive challenges. He would also have plenty of abilities. He is a mix of strengths and any human being.

I couldn't have known that I wouldn't just learn to accept, I'd forget. I don't sit around thinking about Max's cerebral palsy. Sure, there are times when I wish things came easier. The other day, Ben reached up to Max to pick him up and I felt a twinge of sadness; Max can't hold his toddler brother, because his arms aren't up to it. Mostly, though, I'm not thinking about the way his limbs move because he is just Max, my teenage boy. At times, he's a joy. At times, he is a pain in the any of my children.

I couldn't have known how much joy I'd find in the inchstones. Early on as a parent, I'd torture myself by reading about the developmental milestones—the ones Max wasn't hitting. Would he be able to sit up? Babble? Pick up toys? Walk? I came to take heart in the bits of progress, like when he could sit up supported by a Boppy, when he was able to prop himself up on his arms and then his legs and when he articulated an "m." Taking satisfaction in them was much more heartening then always wondering about the biggies. I quit looking at the baby books and the email updates, and learned to just focus on Max.

I couldn't have known how much strength I'd find in Team Max. I didn't set out to build it; I just tried to find the best doctors, specialists, therapists and schools I could. Some, like his pediatrician and pediatric neurologist, have been with Max since he was a baby. Others have come and gone. But always, I've felt grateful to have good experts guiding both Max and me, along with friends who've always been there to lend perspective, advice and a listening ear.

I couldn't have know how much strength I'd find in me. There is no training for motherhood, let alone training for being your child's advocate. Driven by the desire to give Max every opportunity to succeed, to enable him in any way possible and to make sure he had every asset on his side, I have researched, pushed, prodded, insisted, cajoled, begged, questioned and demanded to make it all happen for Max. I haven't always been successful and man, sometimes I am tired. But I don't beat myself up.  To paraphrase Mick Jagger, you can't always get what you want for your child, but you can try.

I couldn't have known what an outstanding father Dave would be. I was so worried about him in the NICU; I will never forget how he put his head down into his arms on the table when the pediatric neurologist told us that Max had a stroke. He's always been such a warm, loving guy and I figured he'd be a great parent, but he has been the most loving, hands-on, encouraging, do-it-all dad.

I couldn't have known that we'd be able to do typical family things. We go to events, we take trips, we go shopping, we have dinner out, we go to movies, we tease each other. We laugh a lot, we fight, we love—the whole family shebang.

I couldn't have known how enabling technology would be. We take Facebook, Instagram, blogs and our iEverythings for granted these days, but when Max was a little guy there was no social media, parenting blogs were just starting and his communication device was a clunky, heavy one that took forever to program. Then came the iPad and speech apps, which were game-changers for Max. I've found amazing community through this blog and in social media. And we're pretty much still at the start of the tech and online revolution; who knows what will come out down the road.

I couldn't have known that the grief would recede. Max's two weeks in the NICU will always be a painful part of my past, along with the bleakness I felt during his first year. But they are just that: my past. In some ways, they feel like another life I lived. Max is not that poor, sad child. I am not that sad mom.

I couldn't have known Max. Obviously, you never know how that baby you're holding in your arms will turn out. But when you've been told your little guy might never walk or talk and could have vision and hearing problems and cognitive impairment, it is especially impossible to picture a child who will turn out OK, let alone great. And that's my Max. Yes, I still worry about what the future holds for him, but I no longer worry about the person he is. And what a person he is. Max communicates, talking in his own way or using a speech app. He walks; he can't jump or climb, but it's no biggie. He can read. He has issues with fine-motor skills and works through them; when he can't, he knows to ask for help. He is better at directions than I am. He has passions—travel, dining out, movies—and a vision of someday being a firefighter. He's super-social and smiley, and to know him is to adore him.

I couldn't have known. Now, I do.


  1. Happy Birthday, Max! And congratulations to everyone in the family - this is a milestone. Thank you for sharing your lessons learned, Ellen!

  2. Happy Birthday Max!!!

    I love how well you can put it into the written word. While the beginning of our story is very different, Luke (who turned 15 in October) and Max are at similar junctions in life. Like you, I don't think of autism when I'm with or think about Luke. He is just Luke - nothing more, nothing less. With Luke, I'm waiting for his passions to emerge. He loves sidewalk chalk (to the tune of 3 boxes a week), and drawing what I would term abstract art. But just like everything else, these will emerge in Luke-time.

  3. Happy birthday Max! It was incredible to meet him at camp all those years ago. Reading the progress he's made since then, how much he has grown up- it's just amazing. You are doing just fab :) Take care.

  4. Aw, happy birthday to Max! And thank you for this blog. I've so enjoyed meeting your family thru it (what a mensch Dave is, and how cute is Ben, and how relatable is uber-teen Sabrina) -- wishing you and Max many years of surmounting challenges and experiencing joy.

  5. Happy Birthday Max! Are you in Vegas yet???

  6. Happy 15th Birthday Max!

  7. Happy birthday Max! I loved so much of what you had to say, and it's evoked so many different thoughts that I don't know if I can articulate well. Mostly just something that I prayed about last night at bedtime. That I don't know how all of this ends for me and my child, and that although this life is hard, and being a special needs mom isn't something I planned on, I want this life. The alternative, a life without my daughter, is not what I want. My life has joy, meaning, and purpose because of her, and I love every hard and tiring minute of it.


  8. Happy birthday, Max! Look at all you’ve accomplished in the last fifteen years! I can’t wait to see what the next 15 have in store for you! You are funny, charming and determined and these are qualities that will take you far in life. Your parents have loved you from the time before you were even born and I know they will always be the wind beneath your wings. With that kind
    Of love and support, you will achieve wonderful things. Happy Birthday, Max!!

  9. Indeed- thanks for sharing your journey. I often cry laugh and breathe easier as I read along!
    Happy Birthday WEEK Max!

  10. My guy has Spina Bifida (SB) but my feelings were/are the same. When he was diagnosed back in 2016, I was not sure what to expect. It was all too easy to make assumptions and judgements about the unexpected, about a different lifestyle than what I was used to. Nearly 2 years later, some things have proved true while other concerns I've cheerfully dismissed. And I've learned a lot about myself. Parenting twins (one of which has spina bifida) is not easy but there are ways to make it work and things that are helpful as well. I doubt that I could have survived the past 18 months if not for my partner.


Thanks for sharing!

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