Friday, July 26, 2013

Supporting Families Affected by #FAS: A NEW partnership between Emory University and NOFAS Georgia!

Department of Psychiatry,
Behavioral Science and Pediatrics
“What lies behind us & what lies before us are tiny matters compared to what lies within us.” 
~ Ralph Waldo Emerson

I find it so surreal. I almost cannot believe this is happening, but it is and it's only going to get better. Our meeting at Emory went great!! Tracy and I are so happy in our role of strengthening NOFAS Georgia (National Organization on Fetal Alcohol Syndrome). We are even more honored to take part in a new partnership between NOFAS Georgia and Emory University that will allow us to offer support for families affected by ‪#‎FASD‬! Our hope is to quickly begin work in the Metro Atlanta area and then expand this network of support throughout the state so we can impact as many lives as possible!

Before now, NOFAS Georgia has held on by a string, thanks to the herculean efforts of Melissa Cook (a parent volunteer facing the same challenges as us) and the folks at Emory University. Tracy and I have joined Melissa, and the three of us have pledged ourselves to lead a parent initiative, through NOFAS Georgia, that will offer families in our state the support they so desperately need. Great things start from humble beginnings. Our goals are very modest...we just want to change the world!!! I just love a good fight. That's just me...challenge accepted!!!

Our Family's Story:
The girl that stole our hearts
My wife and I actually talked about adoption on our first date. We knew from the beginning that we had found a similar spirit in each other. I sincerely believe that divine providence lead our lives in that very direction. Our hearts led us first to become foster parents. I was an educator, with a particular love for early childhood education and Tracy would be a stay at home mom. We had been prayerful and saw this as the role we were meant to fulfill. We still wanted to adopt someday, but we put that on hold to answer the call of serving children and families in need. We went through the training, orientation, and evaluation that goes into becoming foster parents and soon had our very first placement. God blessed us with Aniah!

I held her in my she holds my heart in hers.
Aniah's birth mother had tried to do the right thing. She attempted to curb her drug use during pregnancy, but tragically turned to consuming greater amounts of alcohol instead. Aniah weighed a little over two lbs when she was born prematurely. We could cradle her in a single hand. Thankfully due to the close relationship we formed with her birth mother, we were made aware of so many details regarding the pregnancy. Aniah will struggle with FASD (Fetal Alcohol Spectrum Disorder) her entire life. FASD is often referred to as the invisible disability. Thankfully, we knew what we were up against. This knowledge can be a unique blessing for any child suffering with FASD and we were determined to make the most of it. 

What is FASD?
Fetal alcohol spectrum disorders (FASD) are a group of conditions that can occur when a mother drinks alcohol during pregnancy. FASD is a disability that lasts a lifetime.
We were prepared for the worst. We were told that the primary disabilities linked with FASD are permanent. Individuals suffer from a mixture of mild to severe effects, stemming from this neurological dysfunction and damage to their central nervous system. They may suffer from memory disorders, learning disorders, behavior disorders, sensory disorders, sleep disorders, mood disorders, impaired speech and language development, and a host of others. The damage caused to the brain does not lessen or improve, even as the person gets older. Parents like us are often told to temper our expectations. This infuriated us. We had a realistic understanding of this disability, but how could we ever place a limit on the potential any of our children?. 

We had hope and we grasped at it with all our might since the moment Aniah first came into our lives. Despite the obstacles, the outlook for our children could possibly change with the right support, sound strategies and a greater understanding of FASD.  As most parents of children with FASD, we faced an uphill climb. The support structure these families need did not exist for most parents then, and is only in it's infancy now through groups such as NOFAS. Thankfully we were in a unique situation. As foster parents with Georgia AGAPE, we had access to a greater amount of training and support than most parents. We were determined to take advantage of this and every learning opportunity that came within our reach, in order to help Aniah and the other children we would inevitably serve.

The arrival that made our family complete
The family God meant for us to have!
The years passed and Aniah's birth mother was never able to overcome the demons that overwhelmed her. During her last visit to see Aniah, she asked if we would adopt her. She knew that we loved her, and despite her despair and the decisions that had brought her to this point, she just wanted the best for Aniah. We promised to love Aniah always if they were not able to be reunited, but we also begged her not to give up. She agreed, but it was sadly the last time we ever spoke to her. She disappeared and after nearly three years in our care, the court terminated parental rights and asked if we, being the only family in her life, would be interested in adoption. I've never answered such an easy question. Our minds and hearts were made up long before then.

The treasure that came sailing into our lives!
Around this time, another child came into our life. His name was Tristan. We were never able to form a close relationship with his birth mom since she had been incarcerated. Despite the bleakness of this situation, it ended up being another amazing blessing for a baby that would be born with FASD. Because of the circumstances, his birth mom disclosed her complete medical and family history. His birth mom was HIV positive. Because of the likelihood that he would be born with HIV, his extended family would not take him in. This also made placement within the foster system nearly impossible. DFCS (Division of Family and Children Services) approached AGAPE, and AGAPE came to us. This was unlike anything we'd undertaken, but our confidence in the training AGAPE could provide made the decision simple. 

We welcomed Tristan into our home three days after he was born. The first four months of his life were arduous. In addition to the developmental delays suffered through FAS, his mother had been on a regiment of preventative HIV drugs during pregnancy and these would continue through the first six months of his life. He was sickly and weak, but with each passing checkup and blood test, the likelihood that he had contracted HIV dropped drastically. After almost two years, the doctors declared that they were certain he was HIV free. Despite this, no one in his family would take the responsibility of caring for him. The spectre of FAS and FASD loomed large. His mom could not care for him and after two and a half years in the foster system, her parental rights were terminated. We were again asked the same question we had been asked before. As the only family present and the only family he had ever known, would we adopt Tristan? Again, the answer had been decided long before the question was ever asked. This was the family God had intended for us. 

The effects of FASD on Aniah and Tristan
Good times at the Georgia AGAPE foster banquet.
When we look at Aniah and Tristan now, we are overcome with emotion. With each additional ounce of information we learn about FASD, we are grateful beyond words for how far our children have come. FASD has manifested itself within our children in very noticeable ways. Aniah has always displayed profound developmental delays encompassing the entire scope of FASD, both physical and mental, but her progress has never plateaued. She has a persistence that can move mountains. Despite her difficulties, she loves to learn and tackles each challenge with an understanding that hard work is the key to success. We have also nurtured her strengths. Despite the weaknesses we work to help her manage every day, she has displayed an emotional intelligence that I find amazing. Her empathy and ability to motivate others exceeds that of almost every student I have ever worked with in my entire life. 

A smile that can lift anyone's spirits!
I remember doing a soccer camp last summer, we watched nearly 300 children take the stage, as they were cycled through team by team. Every team awarded a "game ball" to one child on the team. Every team exited the stage always with just one extremely happy kid, ball safely clutched in their arms. When Aniah's team left the stage, there were TWO extremely happy kids. Aniah had not won the game ball, but you wouldn't have known by her expression. Her face had lit up as she genuinely congratulated the boy that did win. Parents throughout the auditorium gave a collective "awwww" in response. She'd done something no other child out of hundreds had done. THAT is my daughter! I've witnessed her self-awareness blossom in ways greater than most children without disabilities. Even in the area of self-regulation, she has made strides that most children with FASD never experience in a lifetime. I can objectively say Aniah is one of the sweetest and most savvy kids I've ever met. I honestly believe she will follow in my footsteps as a teacher and excel!

The effects of FASD on Tristan are different in that his greatest obstacles manifest in behavioral and mood disorders. Tristan is a tumult of emotion. He dwells in the extremes of happiness, anger, sadness, etc. We work constantly to help him regulate himself. Despite the intensity of his emotions, and what can result because of it, he is one of the sweetest and toughest kids I've ever known. We've worked with this strength and honed his ability to reflect and learn from any situation. He still makes mistakes, but we work tirelessly to make sure he learns from them. Every setback can be an opportunity! I've known many parents to give up on children with behavior problems like this, but Tristan has proven time and time again, that he can learn and triumph! This fits so well with his other strengths. His competitive nature is extreme, just like the obstacles he seeks to overcome. Nothing can knock him down and keep him there. 

Tristan received the best reader award in his class!
This has translated academically as well. Here is a child with brain damage, that entered first grade as a below average reader since the focus up to that point had been behavioral and on socialization. By the end of the year, he made over two grade levels of progress as a reader and is set to be evaluated for the gifted program. His accomplishments are even greater when you consider that he has never been identified in the school system as a child with special needs. He has no IEP (Individualized Education Plan). His success is all a result of a sheer force of will that we have cultivated at every opportunity. Parents can be have an impact for children with FASD, and we want others to know that they can make a huge difference!

See no sass, speak no sass, hear no sass!
What an amazing adventure it has been
Over almost eight years, Tracy and I fostered eight children total, including Aniah and Tristan, in addition to raising own own children Lawson and Kyla. Before ever fostering, Tracy had garnered extensive experience as a classroom volunteer and running a successful home child care business for children with special needs. I had been an educator now for almost two decades, which included serving children with a variety of exceptionalities and their families. Tracy and I embraced every training we could attend and researched more information regarding FASD, and how the brain learns, than most teachers I've ever known. FASD is just not on the radar for most teachers, but it should be. During our tenure as foster parents, we ended up specializing in children with severe emotional, physical, and mental disabilities. We would not give up fighting for our children. I was even inspired to pursue a graduate degree in brain-based learning, all for the sake of serving our own children and others. 

Working to support others 
We refuse to relent. We refuse to surrender. FASD presents a huge obstacle for these children and their families to overcome, but we can change the course of their lives with comprehensive support, sound strategies, and a greater understanding of FASD. Every day can be a success. Our children may experience setbacks due to FASD, but to deny them the chance to reach their full potential is unacceptable. I believe this is true for my own children and for others with FASD. The greater danger lies not in setting our aim to high and missing the mark, but in setting it too low and achieving it. My children prove how high they can reach every single day. I want other parents to share in that hope as well. 

Providing education about the risk of alcohol use during pregnancy, supporting individuals and caregivers living with FASD, and advocating on their behalf is precisely what NOFAS is about. NOFAS Georgia is the state affiliate helping to educate and support families in our state, in partnership with Emory University. Tracy and I are both looking forward to the supporting friendships that will be made between us and other FAS caregivers and we are looking forward to locking arms with Emory and working together to provide education about FAS prevention. I am personally excited about any opportunities that come my way to share the skills and knowledge I have gleaned from my education and personal experience with other parents, so that they can help their children reach their full potential, and not just what experts "think" our children can achieve. 

I know this was a long post, but thank you for letting me share our story with you. Please feel free to share this positive story with others, in fact I respectfully ask that you do share this to help increase awareness of #FAS and #FASD. Parents of children with special needs, regardless of what kind, often need to hear an uplifting message. Perhaps this story can offer a glimmer of hope. Whatever your cause may be, never believe that what you can accomplish doesn't matter. That's NONSENSE! It is only through inaction that we guarantee failure. You might be only one person, but one is still greater than none! Have the courage to stand alone if you must! You could end up being the spark that ignites a fire!