Thursday, November 6, 2014

Raising kids with special needs: Why it's good I didn't know then what I know now

"It's good that I didn't know back then what I know now," I told my friend. We hadn't spoken in several years, and I called her the other day when I was off work.  She has kid with OCD and, like me, she'd gone through a lot of anxiety in his early years—and faced down a lot of doom-saying doctors.

I meant what I said. As much as I wanted to know back then what Max would grow to be capable of, it's a good thing I didn't.

When Max was a little guy, my entire existence centered around a central question: What would he be able to do? Would he walk? Would he talk? What would his cognition be like? Would he feed himself? Would he take care of himself?

We knew full well what Max was at risk for: not talking or walking, cognitive impairment and fine-motor challenges, along with vision issues. The stroke had damaged both sides of his baby brain. But as Dave and I quickly learned, no expert can tell you what the future holds. Some give you glimmers of hope. The fact that Max was able to bicycle his legs as a baby was a positive indicator for walking, the physical therapist told us; cerebral palsy can make your legs scissor. But experts can also make you feel utterly bleak, like the nenatologist who said that Max's future looked "ominous" (yes, he used that word).

But oh, how I wanted to know. I visited specialist after specialist for kernels of insight and nuggets of hope. I was obsessed with the Pediatric Stroke Network e-loop I joined, and regularly reached out to parents of older kids to pelt them questions: When did their child pull to stand, crawl, walk? Did they babble? (Max never did.) When did they say their first words? How was their comprehension and learning?

Once, a doctor gave me this perspective: "If he was going to be in very bad shape, you would know by now." Which was somewhat comforting, although it didn't answer the open questions.

As much as my desire to know consumed me, the desire to max out Max's potential drove me to find the best doctors, to push Early Intervention for more hours of therapy, to try alternate treatments like hyperbaric oxygen therapy and do a stem cell infusion at Duke University.

If I knew then what I know now, perhaps I wouldn't have been as determined. Desperation can make you find strength and grit you never knew you had.

If I knew then what I know now, I likely would have been crushed. Knowing for sure that Max wouldn't have typical speech, and that he'd have cognitive impairment, learning challenges, movement issues and trouble using his hands, would have been a lot to bear. I needed to grow into Max's diagnosis, and to develop as a parent. Now these things are just part of who he is, not the whole of him. They do not faze me.

If I knew then what I know now, I wouldn't have had the hope I needed that my efforts and those of the therapists, doctors and teachers could affect Max's functioning. I so needed to feel—no, to believe—that something was in my control when everything felt out of control.

For sure, it would have brought tremendous relief to know that Max would walk, a Big Question that was answered on his third birthday when he toddled across his bedroom and into Dave's arms. But having a crystal ball for that other stuff he'd struggle with? No, it wouldn't have helped and most likely would have hurt.

We now have a sense of what Max's speech will be like. His cognition continues to develop, and in some ways remain a mystery. His fine-motor skills are still emerging, and will always be a challenge. But I have learned over time to take it all in stride, and not keep trying to peer into the future, which doesn't do you or your child any good. 

This is not to underestimate the angst of parents with young children who wish they could know what lies ahead. I was you. I know what it's like to be the most anxious and worried sick you've ever been in your entire life. To feel like nobody else you know is going through what you are. To look at your beautiful child and feel sad that you're sad, because he doesn't deserve that. To feel so restless and unsettled in your present and wish you could fast forward because you Only. Want. To. Know.

I just wanted to share food for thought, for parents who are going through what I did, about why it isn't all bad to not know what the future holds. There is no choice in the matter, but perspective may help take the edge off.

Actually, there are some things I can tell you about the future:

• Your child will surprise you. In ways you can't even imagine.
• You will find bliss in the inchstones, which happen far more often than the milestones: A sip taken, a spoon clutched, a toy button pressed, a sitting position held, a syllable uttered, a high-five given.
• You will adapt to your child's diagnosis, same as your child will adapt to his challenges. His disability will no longer seem like a life sentence; it will be life as you both know it.
• You will not spend practically every single minute thinking about his development. Or regularly cry in the shower, bathroom or car.
• No matter how your child turns out, you will be grateful for what he can do and despair a lot less over what he can't.
• Technology will continue to enable kids and improve their quality of life; who knows what marvels lie ahead. The iPad or iAnything wasn't around when Max was born, but now he uses it to speak all sorts of sentences, do homework and learn. (And, yeah, find YouTube videos of fire trucks.) Every day, I am amazed by it.
• When medical challenges rear their heads they will be unnerving, of course, but you will better handle them as the years go by. (And you will acquire all sorts of handy strategies for dealing with doctor offices and insurance companies.)
• Nothing may feel normal right now, but you will find another normal. And it will be a good place.


  1. Very wise post - really resonated with me. Thanks so much for sharing.

  2. As an autistic flutist, the way I do things often deviates from average. However, I didn't come to be average. I came to be exceptional. It's not average to take three honors classes move from 10th to 4th chair with 10 flutes total in band, or for a girl like me to squat 55 pounds. I think being autistic makes me very dedicated in what I do. I don't take my classes for granted because I know I might not be able to participate in them.

    1. You can squat 55 lb? I bow down to you :) I trained with my daughter with her squatting 30 lb and I tried 15... couldn't keep up. I love hearing your comments on this blog, please tell us more!

  3. That's exactly how I feel. Especially this:

    "I needed to grow into Max's diagnosis, and to develop as a parent. Now these things are just part of who he is, not the whole of him. They do not faze me."


  4. Thank you for this and I couldn't agree more. My son is 2.5 right now and I don't want to fast forward and see the future nearly as much as I did during his first year. As much as I wanted that, I'm so thankful my wish was not granted. My kid is a bubbly and happy 2-year-old but if I had seen back then that his speech would be delayed or that he would still be working on unassisted sitting at this age, I would have probably been far more worried than would have been necessary. We do "grow into" our child's diagnosis. I think we need that time as parents. If we had all the information up front it might be too much to process.

  5. You speak to me heart! I was that mom too. What seemed like the longest days of my life...I couldn't eat, sleep, go a second without worrying about the unknown. I have never prayed so hard in my entire life! I had to disconnect from social media and some of my friends to grieve. I finally realized one day, I can't let tears of anxiety and worry cloud my ability to notice sweet happenings. I will not let fear consume my joy. We too, celebrate "inchstones"! My cousin (an autistic mom) once told me, "your pain is not her pain." Although its sad when they might not interact with other children yelling desperately to get their attention, or have noticeable quirks that leave everyone staring in your direction, our kids have no idea that they're different. We embrace those differences and celebrate them. When I was pregnant with my precious Mila, I prayed HARD for a child that would be different. A child that would stand out and be nothing like those around her. Although having a child with missing DNA was not my idea of "different", I can't imagine her being anything else than who she is! She is the happiest, sweetest, most musically inclined, special soul I have ever met. She doesn't walk; she doesn't talk; but she's amazing and teaches me everyday. After her diagnosis, we met with the geneticist. I almost felt as if they were surprised by Mila's function. Her syndrome is so broad and unpredictable. The doctor looked at me and said exactly what I had been feeling... "Mila will write her own story." Thank God! Its hard when you have physicians dictating who your child will be. There is only one Physician and he doesn't wear a monogrammed white coat with a laptop in his hand.

  6. "Nothing may feel normal right now, but you will find another normal. And it will be a good place." Love that!

  7. This is just beautiful. Thank you for writing it.

  8. Well done, warrior mom! What Max CAN do IS a testimony to your dedication as a mother. And sharing glimmers of hope with those who come after us is a noble privilege indeed.

  9. Great post - thanks for sharing what so many of us moms feel. When my daughter was diagnosed with autism all I could see was doom and gloom. But as I learned about her and what she needed that all changed. Now she is 15 and a happy, healthy teen who loves to write creative stories.

  10. Thank you for such a wonderful post. We are grandparents of an 11 mo. old who suffered HIE prior to and during emergency c-section at 33 weeks. Your expressive, heartfelt words reflect so many of thoughts and feelings we have had over the past 11 months. This will be read and re-read as move forward in our journey with our little one ...thank you for helping us, and others, with your posts.

  11. Fantastic post Ellen! I think if I were to become a parent of a child with disabilities I, too, would become obsessed with "knowing" what was to come, even though I have disabilities myself and talk a good game about acceptance and such. I'd want to know exactly what to expect and what to shoot for. And patience probably wouldn't be one of my stronger suits.

  12. You may have even clicked on the links held within and felt the sting of losing your account to an industrious and Ryan Eagle Scammer .

  13. Thank you. And yes I've changed. But in the first few days after the diagnosis all I could think about was my son's disability and that I wanted to abort. I'm glad I didn't research spina bifida the same day rather I tried to process the news. My son and daughter are due in a few weeks time in early May.

    BTW, the last comment seems to be from a scammer.


Thanks for sharing!

Related Posts Plugin for WordPress, Blogger...