Down syndrome has its way of sneaking up on us, no matter where we go, where we are. I get the message, Hashem. You want me to continue climbing, attempting to move mountains, on behalf of this very special population. I shall persist and try my utmost.
I met a friend at a Bar Mitzva (for a boy with Down syndrome). Her sister has a daughter with Down syndrome. We looked around the room at the throngs of guests ranging from friends, relatives, family members of individuals with Down syndrome, professionals in special education, and parent advocates. We stood and discussed how far the DS population has come over the past three decades. She suggested I draw up a timeline of DS acceptance – the official ‘coming out of the closet’ and the years following. I need my readers’ help with this – so many variables need to come together to get a complete picture of this momentous turnaround in society.
We continued schmoozing. She reminded me of the time her sister gave birth to a baby girl with Down syndrome – a little girl with complicated cardiac and gastro issues. I was a good friend with Mom too, but she refused to talk to me. She was too distraught and hoped that with the passage of the first few days post-birth she would no longer need my support. She secretly hoped her baby would die. Little Miss Princess fought like a lion…. Mom finally picked up the phone and called me. I don’t even remember what I said to her. Now at the simcha, Sister tells me, “Your advice was the best thing she ever got and the most necessary words she needed to hear. You told her, ‘Get real; your baby will most probably survive.’” It was a shakeup, but one that brought her back to the world of reality. Miss Princess is now a healthy adolescent and a graceful dancer to boot!
Sometimes the stab is really the band-aid. But, let’s be careful and not take liberties to stab for the sake of stabbing.
My relative, Faigy, has a cousin who had a baby with Down syndrome, the eleventh child. Many of the new mother’s close loved ones suddenly forgot their ties and made no acknowledgment of the new baby. Others did call and send gifts. Most of the gifts consisted of linen sets for adult bedrooms. The new baby was totally ignored. Faigy was the only one who actually brought a gift for the baby when she came to visit. The new mother broke down, expressing her feelings of isolation and abandonment at such a crucial time when she needed so much support and sensitivity.
Avoidance is not sensitivity; it is cowardice and it hurts.
The debate of integrated versus segregated special education continues. Both sides have valid justifications. Readers of my magazine know where I stand on this issue. I recently encountered a commercial advertisement for an agency that provides hospice care for the terminally ill. Its message resonated with me and I immediately thought of the analogy of the special needs population and its educational setups. People might look at patients placed in hospice care and say their families are ‘giving up on them’. The counter-argument is that these patients are getting quality, end-of-life, pain-free, dignified care. The same holds true with the special ed argument: one can say that in special education we are throwing all special kids together, separating them from the real world of regular people, whereas the other side pontificates confidently, what a blessing to be giving these special children proper education and tools customized for them for life.
Where do you stand on all these issues? Let me hear from you.
This article first appeared in issue #16 of Down Syndrome Amongst Us