There are so many great people who are dealing with FASD (Fetal Alcohol Spectrum Disorder). People who have this disorder and their caregivers/families. I have a passion for FASD as I am blessed to be the mom to 10 amazing children who have FASD. They are each such unique and wonderful individuals. I cannot tell you what parenting them has meant to me and my husband. However, that being said it is an incredibly hard disorder to deal with. So many people do not understand this disorder. There are severe physical issues but no one sees them usually. See the brain damage is not visible but it can and does affect almost every part of a persons life. The problem is that there are not necessarily any recognizable signs. Even the children who have all the facial features are not recognizable to most people.
One of the things that I struggled with after our first child was diagnosed with FAS (Fetal Alcohol Syndrome) was that we were given the diagnosis and told basically good luck. I walked out of the appointment feeling numb. What was the future? What little I knew had come from reading The Broken Cord by Michael Dorris. I had not gotten super good feelings from that book even though it was a beautiful story. I went home and began whining about why wasn’t there more for families? This is when my husband started saying “if you want to have support than start it!” I thought what the heck what can I do? I am a mom who gave up her career to stay home and be a mom. As the years went on and we added to our little group it still niggled at me that we had to have tangible supports for families. Finally I talked to a therapist and together we worked on putting together a parenting group with a children’s group that ran concurrently. From that grew the support group Roots to Wings (www.stopfasd.com). I am so excited that this group is growing both online and in real life. This is a start but honestly this is NOT enough. Why is it that while there are lots of groups working on prevention and a few on support there is still no actual support systems? The fact is that most of the FASD population does not qualify for services when they reach the age of 18.
There are systems that could work. The problem is that so few believe in them and there is no funding. The fact is that FASD is a largely ignored disability. I dream of a day that we have an environment that is an interdependent living situation. NOT a developmental disability center. People with FASD deserve respect and to see their potential. Within an interdependent setting they can have the assistance of an external brain but be able to also have their level of independence. There would be different jobs and living situations depending on ability. This village would also have the ability to be a wonderful training center for people wanting to learn more about FASD. If you want to learn about FASD who better to teach you than the people living with this disorder? This type of setting would allow for more FASD people to be successful and not to end up incarcerated due to impulsive activities or mistakes made when not being able to have an external brain available. Would every FASD person need this level of living? No, but there are a large number who need to have this sort of living situation. The prayer of this mother is that some day there will be a safe place for my children. A place they can grow and thrive and be successful for their entire life time. Some day money will go to a place that can make a difference. I will continue fighting for this dream for my children and all the FASD people who desperately need to have hope and a future that is filled with positives.