Today as I was driving on Sussex I happened to notice a scenario that is very near and dear to my heart. I saw a lady walking along the sidewalk with a young man following her several paces behind. The lady, who I am assuming was the mother of the young man, was older-looking, and the man following her had Down syndrome. I watched them through my rearview mirror and thought to myself how fortunate I am that my beloved Mordechai and I decided at a very young age that our daughter Naama deserved to be with others who were similar to her. What I would have done at this stage in my life if Naama was still living with us is beyond anything that I can possibly imagine.

Yet I know through my many years of involvement with Yachad and the special needs community in Montreal that there are parents who cannot conceive of placing their children in group homes. In my way of thinking it is a selfish and unfair decision that will inevitably keep the individual with special needs from ever having the best life possible. As the parents age, they are faced with the challenges of health and various conditions that accompany aging, and at the same time with the realization that they may have waited too long to decide what should happen to their child.

To this day I know families in Montreal who are aging and still feel that the best option for their “child” (50 years old) is to keep him or her at home. There has to be a way to open their eyes to the harm that they are causing their child, themselves and their other children.

Is it fair for a sibling who has begun his life, finally free of the difficulties one cannot escape when living with a sibling with special needs, to have to worry about the sibling’s care if and when his parents expect him to be the sole custodial caregiver? Look at a family that looks so beautiful from the outside (or maybe not) and ask the siblings of the individual with special needs whether or not they are prepared to care for them if and when anything happens to their parents.

Is it not totally selfish for parents to expect that of their children? My words are not said without giving serious thought to this predicament. My Mordechai and I spent hours discussing with each other the best way possible to avert placing the responsibility of our daughter’s care on her siblings. We actually knew for a very long time that Naama would always be considered a high priority in the minds of her siblings. We also knew that we could not bequeath that responsibility to them.

It is obvious that when I am no longer alive that the care of my daughter with special needs, and all decisions, will have to be made by her siblings, but at least they will not have to worry about where she should live. From the time we began thinking about it when she was 10, we were convinced that this should never be their problem. As her parents, we were the ones who made the decisions about what her future would be and we knew that she had to be in an environment that best suited her, with others similar to herself.

I feel sadness for whoever it was walking on Sussex. No one can ever convince me that it is better for a mother and an adult child to be living together in such a tenuous situation.

I would be happy to discuss this with anyone who so desires. My only intention is to try to convince those who will be faced with these heart wrenching-decisions to think about what is really right, even if it feels too painful.

Nina Glick can be reached at [email protected].