Why do we never provide supports for Fetal Alcohol Spectrum Disorder?


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.

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About fasmom

The adoptive mom to 12 wonderful children who are affected by Fetal Alcohol Spectrum Disorder and other issues including Reactive Attachment Disorder, bipolar, schizophrenia, CP, epilepsy and oh the list goes on...The thing is these children have taught me things about myself I never knew and would not have missed out on learning. Married to an amazing man and enjoying life on a sheep ranch.
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4 Responses to Why do we never provide supports for Fetal Alcohol Spectrum Disorder?

  1. Hi There Fasmom,
    Along the same lines,, If you are pregnant and drinking. beware. Your baby may be in danger. When a pregnant mother drinks alcohol, baby may develop both psychological and physical problems. Babies may show decreased cognitive abilities, delayed development and varying physical problems including poor growth, small eyes and small head. When such problems are observed in babies when pregnant mother had consumed alcohol, the condition is called fetal alcohol syndrome.
    Kindest Regards

  2. Laurel says:

    Beautifully written post. I have the same wishes and dreams for our daughter. I think part of the problem is the stigma attached to the diagnosis despite the fact that the birthmom probably was not an alcoholic but only a ‘social drinker’. Couple that with an invisible disability and you have the makings of a hard road to clarity.If you can’t SEE the disability, there must not be one, correct? That’s the feeling I get from people. All that said, we are only a small way into this since our daughter is only 9 1/2 years old and her school system DOES recognize FAS–at least we get help from them for now. I’ll keep on working here, you work there and we’ll see what happens in the future.

  3. sarah Irvine says:

    so true!!! It seems you need a dual diagnosis for anything to be taken seriously anymore and it makes me so angery!!!!

  4. Jarrod Anderson says:

    Nora,
    You and I have meet several times and have discussed the similarities between the clients and famlies I serve and your 10 beautiful children. It is something that is truely lacking and so many are falling through the cracks because there are no services nearby. The price for an evaluation just for the diagnosis is something most families and school districts will not pay. There are some school districts that believe that since they are recieving SPED services and have other diagnoses(i.e. ADHD and maybe a behavior disorder such as ODD) and are functiong okay that evals would be a waste of time. Granted, few realize that yes, currently the child is doing fine but, this will not always be the case and we need to start planning now for this child’s future. I wish I had the answers for all of you on this blog and also the families that I work with.

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