We have frequently discussed the difficulty at finding understanding as parents of complex special needs children including the posts Unrealistic Expectations and Feeling Misunderstood . It is difficult for those not walking in our shoes to know how uncomfortable they can be.
How can we expect some mother who tells her son or daughter to go get dressed while she gets dressed to understand what it feels like to actually have both her child and herself somewhat dressed to go out. It felt so good to accomplish that on Sunday that I actually had Larry snap this picture of Billy Ray and me.
Public awareness is becoming more urgent. It is not just about the warm fuzzy of feeling understood by those in the community anymore. Times are tough worldwide. It seems every time we turn on the news there is something about how our state doesn’t have enough funding to keep regular education going. Fighting for care and education for our kids is much more difficult. Based on what I hear from Australia and the United Kingdom similar experiences occur there.
If society sees all of our complex children as Corky from Life Goes On or the Rain Man nothing is going to change for them. We need to communicate about our children in every possible way we can to everyone who will listen.
Advocating as described in Parenting Your Complex Child (April 2006) will help. I am not so naïve as to believe that is enough. We need to bring our children in the community so that they are known and accepted.
There is another issue, while difficult to bring up, that will make a difference. Parents need to unite. Frequently there is division between those who are doing “the diet” or “alternative” approaches and those who are just trying to do what works. We must stop fighting among ourselves so that we can unite to get the message out that our kids are people first and need acceptance and programs to help them.
Peggy Lou Morgan