Google Maps, Harajuku, and the Gift of the Special-Needs Child

While trying to find our way through Tokyo, I discovered that my 25-year-old daughter is better at using Google Maps than I am. For many of you, it likely comes as no surprise that your child is more technologically savvy than you are. It might induce feelings of amusement or even a twinge of angst about getting old. Not so, when you have a once special-needs child. For me, this discovery was met with unabashed joy and a profound sense of relief.

This is my child who had such a dysregulated vestibular system that she could only walk in a straight line if she was following the painted yellow markings on the side of the road. This is my child who never knew where her body was in space, who couldn't walk up and down the stairs, who fell often, who needed to be spun and spun and spun so that her brain could recalibrate, and who never did learn to balance on a bicycle. And yet here she is, easily following Google Maps and leading us through the complexities of the Tokyo underground.

What is it like for a mother to have a special child grow into a high-functioning adult? The relief of it makes me weep. I have trouble putting into words what it feels like to no longer be afraid for my baby. Other special-needs mothers will understand. Many of you are likely still in thick of it, sitting in the trenches with your medically fragile or autistic or learning disabled or non-verbal or wheelchair-bound child wondering, “Will my baby ever be alright?” Will they ever be loved, stand on their own, hold a job, find their way...

We were told she would never walk or talk. Now, she teaches other learning-challenged children to read and write. We were told she would always need to be cared for and would never live independently. Now, she keeps her own calm and happy home with ease. We were told she might never stop needing that painted yellow line in order feel where her body was in the world. Now, she is leading me through foreign cities without fear or confusion. The relief is indescribable. It steals my breath and makes me raise my face to the heavens in gratitude.

When a friend's child was diagnosed with autism, once the sadness of having a non-neurotypical child was acknowledged and there had been time for tears and grief over what might have been, we talked about the gift of the special child, how children who grow and think differently are such an unexpected blessing. I say this not in a Pollyannish way but out of years of experiencing what it's like to have a child who is different. Special children come with unique gifts, one of the most pronounced is their ability to shine a light on what it truly means to succeed. Nothing is taken for granted. Every achievement has been earned through struggle and perseverence, both by the child and by the parents who toil and advocate and fight so that success can be within their child's grasp.

When your autistic child reaches up and cups your face with their hand and finally makes eye contact, or when your child on a feeding tube at last eats enough to sustain their own body weight, or when your child with sensory issues can finally tolerate a hot shower, or when your child, who the doctors said would never speak, spontaneously sings the lyrics of their favorite song at full volume, that is when you will know the bliss of truly hard-won success.

You may never feel this with a more typically developing child. I know as I have one of those, too. There is absolutely extreme pride when they succeed, when they make the varsity team, or they ace their finals, or they get their dream job. Of course, we feel our hearts explode with pride when any of our babies achieve their goals. But perhaps because the joy and relief of having a special child succeed comes in smaller bites, the taste of their success is somehow that much sweeter. It comes with a pang of tender and piercing relief, a combination of both unbearable gratitude and immense solace, like when the stone slab that has been compressing your lungs for years is finally removed and you can fully breathe again.

So when she asked why I was weeping silently on the streets of Harajuku, it was because she can now find her way without either me or the yellow line. I am so grateful.

Journey Far. Be Well.

Danielle

Our daughter has Diamond Blackfan Anemia, a rare genetic condition in which the bone marrow fails to make red blood cells. As red blood cells are critical for so many bodily functions, it has impacted nearly every area of her growth and development. She has had seven surgeries, including cleft palate repair and throat reconstruction, she was on a feeding tube for almost four years, and she required spinal bracing for a skeletal anomaly. All her gains have been hard won. She is our miracle baby, and we are so blessed to have her.

If you are still in the trenches with your special child, please know that you are not alone.
I wish you all strength, solidarity, hope, and the joy that comes from each tiny success.