The subject question is a constant for parents of complex special needs children. People who don’t experience what we do with our kids really don’t understand what our day to day life consists of. They know it must be difficult but are clueless about what it entails.
This became even more real to me, when Kate Crow, genetic counselor who wrote the foreword to Parenting Your Complex Child (April 2006), told me that she read the manuscript through twice because it helped her understand her families better.
In her recent post, Suzanne writes about her first experience with “A [Autism] discrimination”. This kind of discrimination occurs in most disabilities. People don’t understand what they don’t know. Media coverage and movies about higher functioning children which don’t include some lower functioning children or adults actually add to the problem. Society expects our children to be Dustin Hoffman in Rain Man or Chris Burke as Corky in Life Goes On.
I have been telling my literary agent that we need a movie to help society know what living with a low functioning child is like. I don’t know that anyone would be interested in it but it would be a real eye opener. I’d be interested to know if you feel like it would help.
This past week I got an invitation to submit a proposal to speak at a conference whose theme will be “Get Real” with several subtitles. This fits somewhat with the 11/29/05 post Unrealistic Expectations.
I have rambled a bit in presenting the problem and not answered the question. There aren’t complete answers to the question. Here are a few thoughts:
Prioritizing even important things helps. Accepting your limitations and those of your child is necessary. We want to go to every doctor’s appointment suggested and every meeting relative to our child. The reality is that there are just too many. Each appointment disrupts our child’s routine, which makes life even harder. If you are trying to maintain employment, several appointments a month threaten your continued employment. Sometimes I have to say to the doctor who wants to see Billy Ray once a month that it would be easier to do every three months and call if there is a problem in between.
Support systems help. See 11/3/05 post Stress and Support Systems for Families of Special Needs Children . Following the lighthouse concept is probably the best answer to how I do it. Without my relationship with the Lord I was making stupid decisions for my son and for myself. Knowing that I can go for wisdom and comfort when neither the professionals or I know what to do for Billy Ray is vital to our survival.
Hard as it is sometimes I have to put my own needs in front of Billy Ray’s. I don’t mean significant needs that pertain to his health and safety. However, if I am going through a tough time with him and we both need a haircut and can’t do it together, there are times that it is better to get my hair cut which refreshes me so that I can hang in there with him better.
This is intended to be a talk back post. What you have the most difficulty with and what helps the most. Maybe we can support each other here.
I hope to write a post tomorrow on Christmas Eve but I don’t have support staff. So if I don’t talk with you tomorrow, Merry Christmas.
Peggy Lou Morgan