As caregivers of people who are dealing with Fetal Alcohol Spectrum Disorders (FASD) it is so very easy to end up completely cutting ourselves off from the world. The world quite frankly cuts itself off from us often. Our children do not act like other children do. That is just a fact. They each have their own quirks and wonderful gifts but they also often don’t act “their age”. The fact is that most children with FASD act half to two thirds of their chronological age. Often this changes as the person ages but truly during their childhood they are developmentally younger than their age. Also unfortunately most of our children do not quite get the social issues involved in most situations.
Today we had people here to help fit one of my children for her standing frame and also her wheelchair. These men were treated to tons of hugs and LOTS of questions. Like how much does your car weigh? Do you need to wear a pull up at night or are you trained? Hmmm…I truly wonder what these men were thinking? However this is just the norm for most of my kids. I know from talking to other parents that this is true for them also. We just never know exactly what will come out of our children’s mouths or what they may do. We see the quirks differently than most.
I talk a lot about the circle of support needed when raising children. I think you need this period but if you are raising children with special needs you need to have a very good circle. The issue here is usually when you look at this it is when your children are young or perhaps even before they are present. This circle changes though. The fact is that often the circle completely dissipates. Then the parents feel completly cut off from all supports and from friendships.
I hear parents who feel as though they are totally alone. They feel as if they have lost all hope of having a friend. I feel so sad as truly it is hard for people to understand what life with FASD is like. This is a brain injury and it causes so much pain and stress for those dealing with it. If we can just get people to understand that FASD is not the person. It is not the person’s fault that they struggle with executive functioning, impulsivity, abstract thought and processing, spatial memory, long term memory and time/money concepts. This all can add up to behavioral issues and honestly many of our children end up with mental health issues. The person with FASD deals with a lot of self esteem issues and well the caregivers end up with that too.
If only we could have understanding but honestly as the parent of children with many different needs the world is very hard on those who are different. I have a daughter in a wheelchair who is now older. I know that when she was little and in her chair everyone thought she was so cute but as she got older now people talk like she is not there and avoid looking at her. I have watched people laugh at my son who has leg braces and struggles to walk. Not children laughing and saying things but adults. I guess I realize that we have a long way to go to understanding but I do hope that all of us who are dealing with being different can band together and help each other. We cannot allow a total loss of support. We cannot allow each other to become so completely cut off from the world that we feel we have no one. We have to do what we can to keep families healthy and safe and whole. IF we don’t take care of each other we are looking at losing more than any of us can afford.