When we remember that each of us makes a difference no matter what our challenges are, we will have a happier, more peaceful existence.
Parenting a child with disabilities is a full-time job. If you are reading this, I probably don't need to tell you that. As both a mom and a professional, raising my son has been a journey of mixed emotions. Though I know he has been my greatest teacher, there have been times when I was uncertain about my ability to do this job!
My son is now an adult. In providing for him, I have often asked the questions "Why was Jeremy given to me? What is his purpose in this lifetime?" He is unable to walk, eat, use the toilet or speak independently. He requires full-time care and attention. The answer came when I asked that question of a scholar. He retorted, "The question is not 'why has he been given to me,' but 'what do I do with the fact that he has been given to me?' " This has caused a significant change in my attitude.
When my son was a baby, I often found myself feeling self-conscious when we were around others. They could see that my baby was not developing and was severely delayed, though he was still adorable and sweet. As he grew, his differences were magnified, and even babies looked at him with knowing eyes of question. I often felt embarrassed when he screamed out in public. I began to work on myself, as I knew it was clearly my problem. I started to teach others about him and his disability.
Why do family, close friends and I have such difficulty in dealing with his challenges? I believe it is out of pity ("Poor thing!"), fear ("Could this happen to my child?"), revulsion ("How disgusting!"), and anger ("Why do I have to be bothered with this?"). I raised my child with pity. This disabled me in my dealings with him. It kept me from disciplining him as I would a "typical" child. It kept me from involving him in activities where others might reject him. It even kept me from making sure that his extended family members knew him. He was often excluded due to my fear for the discomfort of others.
My son is now 32 years old, and I am still growing and learning, as is he.
Only last week I took another leap in my growth by realizing during a session with a very gifted woman, Judith Bluestone (author of The Fabric of Autism and founder of the HANDLE Institute), that I had still not fully accepted my son. She noted that I was talking to him as if he were a much younger child and not a grown man. This came as a part of learning that even though he is severely disabled, he is still 'there' inside of his challenged physical body. There is nothing wrong with him. It is my discomfort and the discomfort of others that has held me captive. As I watched her work with him and speak to him as one adult to another, I began to realize that I had not fully accepted him or the possibilities of who he could become.
My message is simple. Until I accept my son as he is, right now in this real time, until I allow him the freedom to be in the world without fear of the judgment of others, he will not be all that he can be. If I keep an open mind regarding all the possibilities and stop trying to "fix" him, true acceptance will prevail. I will then find the peace I seek in my relationship with him and with myself.
As a professional, I spend many hours counseling families about how to discipline, teach, and accept their children. Many of us, me included, have spent thousands of dollars and hundreds of hours taking our children to professionals so that we can "cure" their disabilities. I do not discourage this. It is a way of providing your child with every benefit toward his/her advancement. In my case, however, it was the attitude I held about my son that was holding both of us back. As long as I saw him as a child who needed "fixing" I was not fully accepting who he was.
I challenge you to ask yourself about the level of your acceptance of your child, client, relative or a challenged individual you see. When we remember that each of us makes a difference no matter what our challenges are, we will have a happier, more peaceful existence.
*Reprinted with permission from Acceptance is Key by Donna Wexler, 2008. Parenting Special Needs Magazine, Issue, Copyright [2008-09] by Parenting Special Needs LLC. www.parentingspecialneeds.org.