The term “special needs” has become society’s way to describe a person/and or child who years ago was referred to as brain damaged, retarded, and challenged. We as parents of a very special needs child have never allowed any of these terms to bother us and had a hard time understanding others who made such a fuss about them.
In French the word retard means to be late or slow. Sounds pretty normal to us in describing children who have brain damage. Yet, oh my gosh, do we get looks if we use that word. Nina remembers the day that she led a group of Yachad members through a security check at the airport in Montreal. As none of her charges were particularly swift she was worried that they would miss their plane to New York. She contemplated asking people if they would be so kind as to allow the “challenged or disabled people to please move ahead of them” and realized that would not work at all. Instead she said that she had a young group of retarded young people that needed to make their plane and immediately the line opened up as though it were kriyat yam suf. Everyone got out of their way instantly, and of course they did get on their plane.
We don’t really understand why it is so tough to express the actual words describing a person’s disability. Then again, we have learned so many things over the years as to what causes so much stress in an already trying situation.
It seems that the most harmful cause of not being able to deal with a special needs child in a family stems from the parents’ inability to accept the diagnosis of what is wrong with their child. Often the grandparents as well are looking everywhere to find any type of rationale in challenging the diagnosis that has been made. Blame is the easiest thing to do in these types of situations. Doctors are accused of poor prenatal care and mothers worry that they did not take proper care of themselves during pregnancy. Could it have been that Kiddush wine or maybe that skiing experience in the early months of pregnancy?
Over the years we have met many families who have described their children’s learning disabilities—clearly cases of children with brain damage far more severe than learning disabilities—yet the parents are unable to acknowledge the real issue.
We are reaching out to everyone to let them know that once a diagnosis is made the smartest and easiest way to move forward is to feel the pain together but realize that the best thing that can be done for the rest of the family and of course for the child with the diagnosis is to accept it and work together. Often Nina has stated that perhaps our daughter Naama would have been able to do one or two additional things than what she is able to do now. Nina sits herself down and talks to herself asking what would that have meant to the other children in the family? The impact of having a special needs child has to severely influence their siblings. We thought that our children were slightly impacted by Naama’s presence. It was only once they were older that we discussed as adults things which we totally had no idea of while they were growing up. One of our children mentioned that he was uncomfortable having friends over—really??? We didn’t know. It made sense but who thought about it? A sister sitting in a wheelchair, often drooling cannot look too attractive to anyone not accustomed to it. We made it our business to search for respite care opportunities that we felt would benefit Naama in being with her peers and would benefit our other children as well, allowing us to do activities with them that would have been more challenging had Naama not been along. We enjoyed Naama’s reaction to being without us; she just waved goodbye happily. Yes we do meet those who still cannot believe that. The assumption seems to be that without their parents the child will wilt and melt. Hurray to Friendship Circle, JESC, and, of course, Camp HASC and Yachad.
Last week we visited Naama while she was attending a “supper program” that she goes to each Monday night. It is a socialization program where they do arts and crafts, listen to music, hang around with each other, and eventually eat supper. Having been involved in the special needs community for so long we were familiar with many of the “kids” attending the program. One of the boys who we know quite well came over to us and began to cry. We would venture a guess that he is 40 years old. His parents had been begged over the years to allow Allen to move into a group home so that he could be with people similar to himself. They refused. Allen, while living at home, was constantly with his mother. When he was not attending his day program you would see them together in the mall or walking on the street. Allen’s mother recently broke her hip and was hospitalized. Suddenly Allen is living in a group home. There was no one to care for him any longer. Who was doing whom a favor by keeping Allen at home?
Our goal in life, we believe, is for all of our children to become independent individuals who we hope will reach their full potential while being a part of our household. Each person has a different potential. For some that may mean raising his arm above his shoulder and for others it means learning to eat independently. Of course to have wonderful interaction with the family on a daily basis is ultimate and should continue as days and years go by, but special needs children should be allowed to move on to be with others that are similar to themselves.
We all have choices to make in every aspect of life. We chose to accept our daughter’s diagnosis immediately and to take one day at a time not having a clue as to what the future had in store for us. Primarily, we worked together as a loving solid unit determined to make this work for our family and for her. Of course we cried, but our agreement was to take turns—never at the same time. Slowly, as a cohesive unit, we got the knack of how to move forward at this point in our lives with no regrets, and we hope that others will be able to do the same.
By Rabbi Mordechai and Nina Glick
