When Nurturing Goes Haywire - Raising a Child With Special Needs

Parenting a child with special needs can short circuit the natural progression of nurturing that leads from infancy to independence.

My youngest child, Yisrael, who was born with Down Syndrome, is celebrating his 17th birthday. When Yisrael’s 4 older siblings reached this age they were exiting the tumultuous years of adolescence on their way to becoming fully independent adults. Yisrael’s development has charted a different course. As a result, our parent-child dynamic is not the same as that of my other children.

Yisrael at 1 1/2

My wife, Randi, and I were in our mid-forties when Yisrael was born. That’s an age at which the probability of having a child with Down Syndrome increases dramatically. That awareness, combined with our backgrounds of having worked in camps and group homes with children with special needs, prepared us to accept our new son with grace and ease. To this day we still say with appropriate snark that we’re “living the dream”.

As a newborn, infant, and toddler the variance between Yisrael’s abilities and those of a typical child weren’t all that dramatic. Sure, milestones like standing, walking, and talking were delayed, but he got there. Bracketed by nephews a few months older and younger than him and a sister just 6 years older, he was one of the gang. There were issues like a minor heart condition (which resolved on its own) and the need for a lot of therapy which generated an elevated level of concern for his welfare, but overall during those first few years I’d say he was basically just a regular kid and my sense of parental concern was within a normal range.

Yisrael with his nephews

I will add, for full disclosure, that for the last 20 years I’ve had the incredible good fortune to be able to work from home. This allowed me the privilege and joy of being an integral part of the upbringing of my two younger children in a way I couldn’t have imagined for the first three. When the older kids were growing up my three hour round trip commute had me out of the house for 12 hours each work day. Being so much more involved in day to day child rearing certainly created a more intense attachment. Still, Yisrael was different.

As the years moved on, the social and intellectual abilities of Yisrael’s nephews and others his age charted a steep curve of progress. Yisrael’s curve, while always moving up, was more gradual. This created a rapidly expanding divergence between Yisrael’s abilities and those of typical children his age. It’s at the point now, for example, that the nephews Yisrael used to play with as peers are occasionally called up to babysit for him.

It’s a complicated task to come up with a developmental age that aligns with Yisrael’s abilities. As an occupational therapist who works with children, Randi has expertise in assessing child development. We’ve discussed Yisrael’s developmental age often, but a specific age is elusive. Academically, Yisrael is barely on a first grade level with only rudimentary skills in reading and math. On the other hand, his vocabulary is strong, he has a social savviness, great knowledge of music, TV and movies, and he’s a wiz with his smartphone. He also exhibits some typical behaviors of an adolescent. He desires independence, but lacks many of the skills necessary to achieve it.

By and large, though, whatever numerical age we’d assign to him, Yisrael is still basically a little boy. I read him a story each night at bedtime as he clutches his teddy bear. He comes down the stairs each morning and gives me a big hug. He gets dressed, I prepare his breakfast, and we wait for the school bus together. At the end of the school day I hear him talking to himself as he approaches the front door. He bursts into the house with an energetic “daddy!” and another big hug. (Yisrael is quite generous with the hugs!) This has been pretty much the routine since he started first grade. I do sometimes feel like Bill Murray’s character in the movie “Ground Hog Day”! However, unlike Bill, I love my “groundhog days” with Yisrael. We gave Yisrael the middle name “Simcha”, which means joy and he truly does bring joy into our lives every day.

So, you ask, what gives? What’s with the whole “haywire” thing about? It all seems pretty nice, no? Yes, of course, it’s great, Yisrael is amazing, but there are some issues with being stuck in the “nurturing a young child” mode for so long. For one, and this is mostly on me, it’s difficult to foster independence when you feel overly protective and when things move at such a slow pace for so long. It’s much easier for me to just envelope this “little boy” with my paternal shield and do more for him than I should. I try to fight it, Randi is stronger in this regard… we let him go a little further from the house on his own, maybe across a new street. We leave him alone for a little longer, maybe a 1/2 hour this time, but no more, it’s just too long, or is it? It’s always so fraught with worry and anxiety. I remind you, he’s 17, not 8! So instead of the usual tug of war that occurs as adolescents hold onto their parents with one hand while pushing away with the other. We remain locked in a full embrace.

Yisrael and his siblings

This feeds into one of the biggest issues parents of children with special needs face. When, how, and where Yisrael will live when it’s “time”? My eyes well up with tears just typing those words. I know intellectually that setting Yisrael up in some sort of living arrangement, probably a supervised group home, is crucial. Primarily, it’s important for him. He may never be fully independent, but he can live a life of his own. He’ll be able to work, have a social life and take pride in providing for his needs to the best of his ability. It’s important for his siblings. Randi and I won’t be around forever and while they’ve all stepped up and accepted responsibility to care for him after we’re gone, the onus is on us to make sure we’ve set him up as best we can, so they don’t have to deal with that very difficult transition.

It’s also important for me and Randi. While we’re both still in pretty good physical shape and having Yisrael certainly keeps us feeling young, our ages will eventually catch up with us. We’ll be less able to care for Yisrael in the way he deserves and needs. We’ve interacted with many families who have children with special needs. We’ve seen parents well into their 70s and older still caring for a 30-something child who are suddenly panicking because they realize they won’t be able to for much longer and are so worried about what will happen to their child. (Mind you, some parents consciously make that choice. I’m not here to judge.)

Yisrael at 16 with mom and dad

When Yisrael’s siblings moved out there were moments of melancholy and sadness, but ultimately I was able to feel at peace knowing we’d done our job and they’d be fine. I wouldn’t trade the last 17 years with Yisrael for anything. It’s been a joyous, enriching, and gratifying ride. I know in my head that his eventual transition to living in a group home will merely change the contours of our journey and will be better for all involved. Yet the thought of it, even though it’s still several years away, is heart wrenching for me. Imagine what it would feel like to send your 8 year old child to live on his own! That feeling is what I mean when I say “nurturing gone haywire”.

Wishing my “little boy” an amazing 17th birthday full of love and laughter, and hoping that he’ll get the most out of life than he can!