A new friend recently said that she wasn’t going to celebrate Autism Awareness day because Autism was pain to her family. It reminded me of when an old friend delivered a baby with Down Syndrome. There are no words that comfort parents when reality displaces the dreams one has for a child. It is ok to grieve and be angry.
The definition of disability is: a physical or mental condition that limits a person’s movements, senses, or activities; a disadvantage or handicap, especially one imposed or recognized by the law.
Hmmm, disadvantage and limitation…these are heavy words. How then do we discuss this radioactive term without platitude? How do we live with disability in our lives?
First, we grieve and allow others to grieve. Second, we study to find out all the things we can do to make our world and our child’s world better. Third, we learn to respond to the well wishers who don’t understand what the family goes through, but want to be supportive. Finally, we acknowledge that everyone in the family needs time to decompress and rejuvenate.
In my work, I often find exhausted parents, broken marriages, and disgruntled siblings. Why? Well, mostly because everybody spends a lot of time ignoring the affects of disability.
Parents, please remember that there is always hope and proven methods that work to help the child with disability live a productive and happy life. Acknowledge that you may still be a spouse, parent of other children, and are an individual with ordinary needs. Do not sacrifice time with your spouse or your marriage will crumble. Do not burden your nondisabled child with extra chores or responsibility that relate to their sibling with a disability because they will resent and rebel. Finally, take time for your individual needs. We all sacrifice for our children, but being a martyr brings only death to the soul.
“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in sprit as well as physically.” Stephen Hawking