With the birth of our son we joined the ranks of that undefined, amorphous, limitless group of “special needs parents.” Within the first days of the NICU I knew there would be challenges, but I could not ever imagine the constituency of belonging to such a group. A stat perhaps. A label. A stigma?
The status snuck up on us suddenly. At first, it was the missing of a few milestones and a visual impairment that “surely could be corrected with eye muscle surgery.” We had the best doctors, a scientist grandfather, tons of prayer and friendly support behind our backs. We were invincible. Surely, the head tilt would go away with massage therapy. Surely eye contact could be promoted. I actually convinced myself I could prevent autism by using attachment-building techniques.
Eventually, our baby boy grew up and transformed into a child. And the gap between him and the outside world grew.
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We found ourselves limiting his outings, as tantrums became overwhelming and beyond control. We found ourselves walking on eggshells, scheduling all our family days and activities around his schedule and whether he had a “good sensory day.”
The language never came, as we were promised.
There were a few stares from other parents here and there, as if to say “Why don’t you just control him.”
We talked of divorce and of buying a farm and shielding our son from such evils as “bullying,” “child abuse,” and “loneliness”.
One morning I woke up and realized that I was going to a parent support group. And that was that. We were in.
Although the tantrums are just as bad, and the impasse in affection frightening, we belong. There is an army of us, dedicated, traumatized parents, whose children may not smile, walk, giggle, or stack blocks. Parenting books do not capture us, except for just one chapter on “delays.” Parenting advice has to be tailored. “What if I leave him cry in the dark but he is really just unable to tell me that the sheets feel itchy?” we wonder.
It is a rude awakening. To a boundless reality of unanticipated worry, but also to a world of compassion and love like no other. It takes my son twice as long to understand a simple direction as it does my daughter. The public will never bend in admiration at his eloquence and charm. Yet, the few moments where he looks up and flashes a curious smile as we are feeding farm animals are worth a thousand parenting hurdles we encounter every day.
And that’s the truth.
Wow, that was a really engaging and revealing read. Thank you for sharing your experience with us.
As a special needs mama myself, I completely relate to your feelings of fear and desperation while waiting for your child to reach milestones and fit into society’s notion of “normal.” It isn’t easy, but learning to accept him as he is has helped us tremendously, as it appears to have helped you, too. Every one of his successes is a tear-inducing moment, made special by the fact that he worked harder than most to get there. Thanks so much for sharing your story.
I commend you for sharing your story. I’m also a special needs parents x3, so I fully understand as well your struggles and celebrations. One thing is for certain…I feel like I know my children so much more because of all the attention I give them. For that, I wouldn’t trade.
I needed this today. As the mom of a special needs kid who was just officially diagnosed this week, this hit home. Thank you.
Thank you for this. It was finally on of my daughter’s doctor saying that we should join a playgroup or parents group for special needs kids that finally saved us. I quit a baby and me class because I kept getting the sad eyes when ever I’d tell our story. We stopped bringing our twins to the playground because my son’s muscle tone issue made it hard for him to play and my daughters meltdowns kept us constantly on edge. We had friends who sympathized but we didn’t have any real connections to anyone because no one in our social circle was going through what we were going through. We couldn’t join in the “my little guy/ girl just hit this milestone” conversation at the park. Because it we did we’d get either get “oh, they’ll get their” or “Did you try X, Y and Z. It worked for my coworkers daughter who was a late talker.”
When we joined a playgroup for developmentally delayed and disabled kids it was like finding our kindred spirits. No one judged my daughter for needing to take breaks when she got overstimulated or for her meltdowns. Instead we were surrounded by other parents who recognized our anxiety riddled eyes, saw our daughter for the warrior she is and had real practical advice on what we could try or what doctor they liked.
Also, yay Washington, DC! We live in the District.
Keren, always looking for local moms to relate to ! Would love to connect , i’m sure we can swap resources and preemie stories 🙂
Thank you to all for words of support and encouragement ! It’s my first time going public with my story in the blog sphere and I am extremely comforted and inspired by the fact that other parents can relate and find my rambling helpful . Here’s to parenting and parenting with special needs!!
Thank you for your story and perspective. As a new mom (to a typically developing baby) and social worker who works with children with special needs and developmental delays, your comments about being left out of parenting books and advice really opened my eyes. I try to take an anti-oppressive approach in my work, and I clearly need to expand my knowledge base about *practical* and empathic resources and support for parents. I was myopic in not seeing how the community of children with special needs and their parents/guardians are made invisible by their exclusion from mainstream resources. Thank you for showing me that I always have new things to learn and new barriers to work against.