Sunday, January 1, 2023

25 YEARS of FASD and a Promise

As I woke shortly after the bringing in of the New Year I laid in bed thinking not just of the past year, but the past 25 years of our journey with our adopted sibling group.  In 1997 six siblings who were separated in foster care for 5 years in three different homes joined our family. Our family is well versed with special needs because of our youngest biological daughter Becca who was born with severe Noonan Syndrome.  We embarked on faith and our hope that we could help our newest children, just like we had with Becca. 

We took on our children with the promise of the legislation The Adoption and Safe Families Act of 1997 that helped remove barriers of waiting children from foster care into families with promised federal support for many.  We finalized the adoption of 5 of the 6 siblings after one of the children was separated from the others due to his needs of having a home of his own.  TWENTY FIVE YEARS, a quarter of a century we have walked the walk of Parenting Complex Children and now Complex Adults.   Adoption is not just for childhood, but for life.  Childhood abuse, neglect, poverty, trauma.  We adopted HURT Children. We now talk about the ACES, the Childhood Adversity Experiences.  Those experiences my children knew well.  But somehow we do not look deep enough.  Where are the Prenatal ACES?  What about the prenatal exposures they faced?  Set up for adversity, trauma and before they took their first breath and the effects of those teratogens would affect each one of them. Our adopted children have Prenatal Alcohol Spectrum Disorders.

The oldest we know the history as they tell us what they experienced.  The oldest ones told us of the prenatal exposures to the younger ones along with the blood tests that labeled them at their birth for the illegal drugs that were in their system.  But the drug that had the biggest effect on their lives is perfectly legal.  I would fight to get them diagnosed.  I found out from the children’s guardian ad litem and digging through our youngest birth to three files after fighting to get access, that the foster Mom had asked for an assessment for “Fetal alcohol syndrome”.  The team and social workers said they did not want to diagnose her prenatal alcohol exposure due to it would make her UNADOPTABLE.  She was two.  Documents reveal that she was prenatal exposed to crack and cocaine positive.  I would fight for her to be diagnosed with the confirmation of prenatal alcohol exposure by her oldest brother who told stories of his birth mother drinking with her swollen belly until she  passed out.  Years later we would find diagnosis for 4 of the 5 we had and the brother who was separated from the sibling set.  The middle one of the sibling set said he was “too high functioning” to have FASD.  They said he would have to worry about the survivors' guilt that he didn’t get affected.  According to Ann Streissguth and her early findings about Prenatal exposures to alcohol he was the most at risk for adverse outcomes as he would struggle to live up to society’s expectations and would be misunderstood for his hidden challenges.   FETAL ALCOHOL SPECTRUM DISORDERS is the umbrella term for the differing diagnosis for individuals affected by prenatal alcohol.  (PAE). 

Studies have shown that a very high percentage of foster children have been exposed to alcohol prenatally and poly substance exposures like with my children are common. 

Back when we adopted the children, we knew that love and stability was not enough to heal our children.  They were a special needs adoption.  We found ourselves with a small adoption stipend and Medicaid to help pay the costs of their “special needs”.  But what I didn’t realize was that we were in the no-man’s land of our society's failure to help children with severe mental health needs where we were supposed to find services.  We had to fail first to get help.  They had to fail school enough to get a label. They had to have behavior problems to get support. They would have to fail enough to fall into psychosis, be suicidal or violent to get emergency support only to be discharged after things settled down.  We would have to fail enough as a family and parent to get outside help which often did not exist. Blamed for their behavior, blamed for our parenting, setting up the entire family for dysfunction and falling into secondary trauma for the entire family.  I would find myself in the no-man’s land of how prenatal alcohol exposures do not fit in the mental health fields.  When we adopted our children we promised to find them stability and help.  But we were set up for failure.  Because the system does not recognize FASD as a disability and a qualifier for much needed long term supports.

The promises of help for kids from the care systems who are Prenatally exposed to alcohol may never find them and most may never find diagnosis.

I would find myself learning from other older foster and adoptive parents, reading books on fetal alcohol syndrome and becoming a fierce advocate for my children just like I had to with Becca.  Back in 2002 I attended the first task force on FASD. I founded with another parent a facebook group on parenting kids with FASD. I have journied with thousands of parents like myself.   Our children may have prenatal exposures to legal and illegal drugs, alcohol, other teratogens, prematurity, trauma, genetic and epigenetic disorders and they need support and understanding. The continued trauma of poor fit and reactive help and the lack of supports tailored to FASD means that they continue to build layers of trauma and its reactions.

I once asked someone where the evidence based therapeutics for FASD?  He told me we were? I said we will have lost an entire generation of kids who didn’t get help.  That was 2003. He said that it takes time to turn the ship, to research and make change.   Here we are over 20 years later and we do not still have any UMBRELLA of support for those affected with an appropriate label.   Did you know that even Fetal Alcohol Syndrome is not a recognized disability when you can see the exposure?  FASD is not just about learning and brain damage?  Over 428 diagnoses have been found to be co-morbid with prenatal alcohol exposures. But for those with Prenatal alcohol exposures will find their diagnosis under ADHD, Autism, Bipolar disorder, learning disorder, intermittent explosive disorder, intellectual disability, and a plethora of any of the co-morbid labels. And the medical pieces will be left out.

It's time that we see FASD!

Some questioned our sanity when we started over again with the fostering of a frail little boy who was 17 months old adopting him at 3.  He had the hallmarks of Fetal Alcohol Syndrome.  I knew that he had many more challenges than they had found.  Our second time around a little guy who again would change our lives.  This time, I had the knowledge of Becca’s medical complexity and over two decades of advocating and navigating the medical world and the years of raising our kids with FASD and the support and experiences of other parents walking our FASD walk.  This time I would find myself navigating both systems at once as McKellan would have many many medical challenges from his prenatal exposures but also genetic and epigenetic challenges we are beginning to understand affect these children from the care systems.

I am looking back.  Twenty five years of walking with FASD. 

The promise of diagnosis, support and HOPE for those affected by FASD in the foster care, kinship care and adoption world has not happened.  Until we have an UMBRELLA under the US Care systems where they acknowledge Prenatal alcohol exposure diagnostics as a DISABILITY these children and families will continue to be failed.

A step in the right direction had been introduced in Washington DC.  The FASD Respect Act (HR4151/S2238) was on target to be passed as a stand-alone bill on December 22, 2022 in the Senate with language agreed upon by bi-partisan Senate HELP committee leadership and the next day in the House but was blocked at the last minute by one Senator. In 2022 the State of California passed SB-1016 which made Fetal Alcohol Spectrum Disorders a qualifying diagnosis for special education under the category of Other Health Impaired. The first state to recognize FASD as a condition to qualify for much needed support and help.
Most children with prenatal alcohol exposure will never find diagnosis, support or understanding under the FASD labels. We can do better.

It is 2023, a quarter of a century 25 years  of rocking my Red Shoes fighting for my children.  I am still parenting, supporting my now adult children as they walk their walks with their differing challenges from their prenatal exposures and trauma.  But it doesn’t end at l8.  It gets even more difficult for us and them.  My daughter paid the price with her life of PRENATAL alcohol exposures.  We do not even yet talk about the effects of prenatal alcohol on the body.  She died from complications of end stage renal failure at 34 and still misunderstood. I write as I watch my best friend's daughter fighting for her life and a new kidney.  FASD is REAL and it can be heart wrenching.
It’s time to start writing again and fighting for those with FASD.  Did you know that 1 in 7 pregnancies have a prenatal alcohol exposure.  It's not just kids from the care system that are struggling, but it's widespread.  But for my kids, they had the promise of the FEDERAL GOVERNMENT when they took them from their Parents to help them have a better life.  And that means we need to create the support and understanding  they need and that begins with passage of the FASD RESPECT ACT for the kids who are in our care systems and beyond.

And BIG ALCOHOL does not want us to raise our voices. It's a 6 billion dollar a month in sales piece of our economy. They put a label on the bottle that turned it into a personal responsibility issue and they really do not want any more research about the effects of prenatal alcohol.
TWENTY FIVE YEARS, of experience and too much failure... It's time to write again. Anny

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