Life with a child or adult who experiences some form of special needs is one of extremes – joy and satisfaction, sadness and frustration. I understand why many see it as a tragedy because I used to feel that way. There was hopelessness of wondering what each new day would bring and being afraid to get up (as if there was a choice when my son wakes raring to go at various stages of moonlight and sunrise). Other nights when tucking Billy Ray in bed and having him say “I luv you Mommie” in the most precious little voice there is a sense of “okay this is going to work”.
In the post Autism the Other Member of the Family, Kristen refers to the "bottom of the barrel feeling", that nameless panic that comes over you all day long.” We have experienced years of that “bottom of the barrel feeling” with Billy Ray partially because he is so complicated that most of the professionals involved with him were as frustrated at trying to help him. I remember screaming “is there any hope for Billy Ray” from the back deck of our former house in the middle of the day when no one was home but me. It must have been really loud because I could hear deer running down the back hill.
Reading book after book that said do this or do that for Austim or ADHD or Down Syndrome or Bipolar (none of it worked for Billy Ray who has been labeled with all those diagnoses) began to make me more angry.
A combination of factors including returning to my faith, stubbornness, anger, and probably my infertility issues created a person that never existed in me before. Giving up was not an acceptable option to me. In that stubbornness I made a lot of foolish mistakes eventually starting all over again to find out what would work for Billy Ray and me. That process is shared in Parenting Your Complex Child, this blog and my websites.
Life has become one of reading signs and evaluating communication by behavior . We found out a lot about what was causing Billy Ray’s frustration with his life and changed everything that we could. This reduced his behavior. The sense of satisfaction at making a difference in Billy Ray’s life is as extreme as the “bottom of the barrel feeling”.
We are not allowed to stay at the elation of making things better for long. Something new has a way of creeeping up without warning. Communication by behavior is now primarily because of his changing medical issues. That doesn’t make it less frustrating to deal with.
Changing what we can, accepting what we can’t fix and praying for wisdom will likely be a part of our lives as long as Billy Ray and I are together. We probably will never be “fixed” but we sure are better and that is satisfying beyond description.
Peggy Lou Morgan