It Took 12 Years For My Son To Be Diagnosed With Fetal Alcohol Spectrum Disorder

More Stories like:

Childhood Development Issues

“My name is Debbie, and I’m a single 64-year-old special needs mom of modest means who lives in southeastern Washington state. My former husband and I adopted our first child, Lydia in 1998 after a long and emotional infertility journey (due to a sexual assault I experienced at 18), then several late-term miscarriages.

Wyatt is our second child, adopted in 2001. He was a happy baby. His sister always doted on him and said, ‘She spoke Wyatt, so he didn’t need to speak.’ It was hard to know if his apparent delays were a result of adoption trauma, or if there was more there we didn’t know about.

old photo of mother with adopted baby daughter and son with FASD
Courtesy of Debbie Raymond

Wyatt’s first health challenge was with his teeth. When his baby teeth came out and new teeth started coming in, his baby teeth were rotten so he was referred for surgery at the age of 2 to scrape down his gum line and cap many teeth so that his permanent teeth stood a chance of growing normally.

I now know that teeth problems are a co-morbidity of FASD, as alcohol affects every part of the fetus while it is developing.

Over the years, Wyatt had numerous dental surgeries to save or redirect teeth growing out of the roof of his mouth, extractions, and orthodontia for about 10 years. The cost alone could have paid for an entire car.

When Wyatt started school, I volunteered in his kindergarten class for reading and realized he had some deficits in this area. He did, however, pass kindergarten with extra support. When he went on to 1st grade, a bigger gap was apparent in his social, developmental, and receptive language abilities to name a few.

Many of the issues he was facing were attributed to the fact my husband and I had recently divorced. Due to prior neglect and abuse in the home, my husband was left in charge of the children while I worked different hours so one of us was always home.

My ex-husband struggled with alcohol substance use, and unfortunately, it took over his life due to the challenges of parenting and his unresolved service-time PTSD and childhood trauma.

family photo of FASD survivor with adopted sister
Courtesy of Debbie Raymond

Changing Environments

Shortly thereafter, I took my son to Children’s Hospital in Seattle for neurological tests and assessments due to a referral from school after failing 1st grade. Despite the sentinel facial features my son has (which only about 10% of individuals with FASD have), he was given the incorrect diagnosis.

Many with FASD are misdiagnosed with ADHD and developmental delays. It was also discovered he has an arachnoid inoperable water-filled cyst on the side of his head, which is visible if you look closely at his face (it looks like swelling on one side). This is another co-morbid condition of FASD or prenatal alcohol exposure.

The children and I had relocated to Prosser, which is where my parents lived at the time. Our lives during this time are somewhat of a blur. I was parenting two young children who had already in their young lives experienced the trauma and abandonment of birth families, but also my divorce and relocation.

Their father was not allowed to see them without supervision, and shortly thereafter moved away as he could not keep a job due to substance use issues.

We found our strength in a new Church community and navigated life thanks in part to my parent’s help shuttling the children to Tae Kwon Do, swimming lessons during the summer, and baseball practice and games for Wyatt.

Wyatt did well during this time with a detailed IEP at school, sports activities (he’s always been a great athlete), and a loving, supportive routine around him.

FASD survivor running track in track uniform
Courtesy of Debbie Raymond
mother with daughter and son with FASD smiling for photo outside in front of brick wall
Courtesy of Debbie Raymond

Diagnosis Journey

As the teen years hit, life became more challenging for Wyatt. Puberty and being chronologically half the developmental age of his peers was hard.

Additionally, elementary school is focused on primarily very concrete subject matters and studies whereas middle school students have to go to individual classrooms where things change, there’s more noise, expectations, and lots of abstract learning.

I had not yet learned a lot about sensory processing disorder, and that it is often a co-occurring diagnosis along with FASD; We know now that Wyatt has sensory processing disorder.

During this time, I realized there was more to Wyatt’s disability than ADHD and at his annual visit to Children’s Village (a satellite location of Children’s Hospital in Yakima, Washington) his doctor did more testing on Wyatt.

Still, he missed the fact he had sentinel facial features and all the primary characteristics of fetal alcohol spectrum disorder. However, we had no birth mother records, so they did no further talking or testing on this possible diagnosis. The sole ADHD diagnosis remained.

I realized I needed to be a more hands-on parent at school to explain his needs, and had always loved working with children. So, I became a special needs paraeducator and went back to college to study special education.

By the time Wyatt was in high school, I decided to become a long-term substitute teacher. This allowed me to have his schedule which was needed, and to advocate and educate his teachers as I learned more and more about FASD.

I knew it was the correct diagnosis for my son – and none of the students in our schools were being accommodated or supported for similar neurodiverse conditions.

Wyatt was an athlete all through high school, a fairly big fish in a little pond, and well-liked. He’s a hip-hop dancer and performed annually for his peers at school and a few dances. He was in leadership class, and every step of the way I was there advocating and educating the school staff for him about FASD.

Wyatt finally got his FASD diagnosis when he was 19. It took me 12 long years of fighting, educating myself, advocating for him, and finding the UW diagnostic clinic during Covid.

Although there is no real support in most of the US for individuals with FASD, it was life-changing to finally have a diagnosis.

FASD survivor wearing a black FASD awareness shirt
Courtesy of Debbie Raymond

Living With FASD

Wyatt has a lifelong brain disability that affects his daily living. He is chronologically dysmature, which is a primary characteristic of FASD. He is vulnerable to being taken advantage of, believes and trusts everyone, and money and time are also primary characteristics he struggles with.

I am his primary caregiver and was granted full guardianship of him when he turned 18.

The transition from high school was very hard. The pandemic hit a couple of months before the end of the school year. I was his resource room reading teacher, and there was no traditional graduation ceremony, closure, or needed events for a dysmature young man like my son.

His identity was tied up in his circle of supporting friends, teachers, and other staff at Prosser High School. Before graduation, a friend saw great promise in Wyatt and his connection with dogs and began working with him and educating him about dog handling/training.

FASD survivor wearing red cap and gown graduating highschool
Courtesy of Debbie Raymond

He had found one of his strengths and his self-esteem and commitment to learning became his focus. Until recently, he worked 2-3 afternoons per week at Camp Doodle Woods in Pasco, Washington training the dogs.

These are dogs that can be facility dogs, support dogs, pets, or anything else. We share his strengths in dog training on social media.

This past summer in conversations we have daily he expressed a desire to have a paid job, as his work with the dogs is a volunteer except for a dog named Gus whom we have partnered with Camp Doodle Woods and is training to be Wyatt’s service dog.

I contacted our local Yoke’s Fresh Market (a local employee-owned grocery store), and Wyatt with my help and oversight completed an application, followed up again with my help, and shared lots of information about FASD and Wyatt’s needs with the manager.

He was hired and has worked there now for 5 weeks part-time as a courtesy clerk. He loves this job, and I am so proud of him and the store manager and staff for circling my son, learning about him, and supporting and accommodating his needs to be successful at the job.

A very small percentage of disabled people are employed in the USA; I believe it is only 1-2%.

FASD survivor wearing blue work uniform for yorks fresh market
Courtesy of Debbie Raymond
FASD survivor wearing red shirt with poodle service dog
Courtesy of Debbie Raymond

FASD Awareness

FASD or fetal alcohol spectrum disorder is a lifelong disability affecting the brain and body of individuals whose mother consumed alcohol during pregnancy. It is the largest cause of developmental disabilities.

It is conservatively estimated in the USA alone that between 2-5% of individuals have an FASD. If we use the 5% figure, that’s 16 million people.

It is at least 2.5 times more prevalent than autism. However, many people know nothing about it because of stigma, misinformation and our very powerful alcohol lobby. It is not a diagnosis that only happens to women who have substance use issues.

It can occur with a few drinks before a woman knows she is pregnant, as approximately 50% of pregnancies are unplanned in the US.

First, if you have a child with FASD, educate yourself and make sure you are mentally healthy as well. The first thing I did before changing how I parented my son, was find a therapist who knew about FASD and trauma and created a life toolbox for my mental health.

This can be hard and you may have to educate a therapist yourself, as very few are FASD-informed. Your health and self-care have to come first, as hard as this is I know as a single older parent who has lost a lot of friends due to the stigma and misunderstanding of this brain-based disability.

Next, take qualified FASD training from Jeff Noble, FASCETS, FASD United, or Proof Alliance.

Lower your expectations, take a strength-based approach to parent/supporting your child, and throw out everything you thought you knew about parenting – because most of us learned from people who also were doing their best but probably had childhood baggage or subjects, they didn’t share with us, as well.

Remember your child cannot change their brain, so we must change their environment and how we parent them. When we make this paradigm shift, they will avoid secondary and tertiary symptoms of their FASD and shine. However, the accommodations and supports, are needed generally for a lifetime.

Adjusting and listening and working with them with a trust-based relationship is essential!”

mother of son with FASD wearing a supportive FASD shirt
Courtesy of Debbie Raymond
Mom with FASD son and daughter sitting on blanket outside
Courtesy of Debbie Raymond

This article was submitted to Love What Matters by Debbie Raymond of Kennewick, Washington. You can follow her on Instagram. Join the Love What Matters family and subscribe to our newsletter.

Read more stories like this here:

‘I heard the word ‘defect’ among whispers. Tears flowed, but her worth remained unchanged.’: Mom shares daughter’s journey with Down Syndrome, heart diagnoses

‘If you want them you need to move.’: Mom shares sudden adoption of foster siblings with Fetal Alcohol Spectrum Disorder

Help us show compassion is contagious. SHARE this story on Facebook with family and friends.

 Share  Tweet