Fetal Alcohol Spectrum Disorder- FASD Part 1

What Is FASD?

 I’m taking a break from DIY projects today to talk about about FASD and my two little boys, both of whom have this disorder.

The story of how we got to a diagnosis is a long one and pretty typical for most foster/adopt families. It involved lots little concerns and a few major ones as I watched the boys grow and develop. I reported these issues, both to the medical team and to our social workers. For the most part, I was dismissed. Which is pretty interesting since everyone knew that the birth mother drank alcohol and used drugs. Additionally, Aiden was drug tested at birth and the test was positive for alcohol exposure.

Our Occupational Therapist had similar concerns but OT’s are not able to make a diagnosis. They work with symptoms and delays to help the boys achieve milestones and have a more functional life. It was her referral to a developmental pediatrician, however, that brought the diagnosis in the end. We are very grateful for her involvement and advocacy for these little fellows.

Both boys had full assessments in February and were diagnosed a week later. It was probably one of the saddest days for our family, even though I knew it was coming. I think I harbored a tiny hope that the social workers were correct and I was just guilty of high parenting standards and over-exaggerating issues. Nope.

FASD, if you’re not familiar with this disability (and I kind of hope you’re not), is an umbrella term for people born with brain damage caused by their birth mother drinking alcohol during pregnancy. The initials under the umbrella are the current types of diagnosis that can be given to children who have been exposed to alcohol in utero and are demonstrating symptoms of FASD. Liam was diagnosed with PFAS (Partial Fetal Alcohol Syndrom) as he has very mildly affected physical features, making his disability largely an invisible one. Aiden has identifiable facial features and was diagnosed with FAS.

 

NOFAS

 

The alcohol exposure can affect people differently but all affected will have permanent long term disabilities in different areas.

 

Having FASD means having permanent brain damage and it will not get worse or better. We’re working on helping the boys achieve milestones and helping them function better on a day to day basis. I’ve learned that this mostly means modifying our environment and our expectations rather than assuming that the boys will learn to manage things like other kids.

With supports and services geared to addressing the disability, the boys have the ability to do well in life. Early diagnosis is crucial to a child’s success. Because early diagnosis means early intervention. Most children are diagnosed much later in life after they’ve experienced difficulty at school, with peers, or with the law. Which is why I was bulldog about getting them assessed early on. Apologies to the doctors and social workers who were probably tired of hearing me mention FASD. Except I’m not really sorry.

I’ve included a link to NOFAS and to a very basic Fact Sheet About FASD if you want to know more about this disorder. Included are some statistics about the prevalence of FASD in Society. I think those stats are on the low side. In almost 20 years in working with families in the child welfare system, mothers are rarely honest about their substance use during pregnancy for a variety of reason. In my experience, it’s not because they don’t care about their babies. It’s because they’re afraid of harsh judgement and that their children will be removed. This is a tragedy because I believe that there are large number of children with “behavior problems” or “ADD/ADHD” that have likely been misdiagnosed.

I’ll be sharing Part 2 our FASD Series in the next few weeks when I share some concrete stories and insight into what daily life with FASD is really like. There may or may not be a Part 3 if we’re having a good couple of weeks or so and I can come up with tips and ideas for working with children who have FASD. Things change around here by the minute. Which is pretty much what living with FASD is really like.

If you’re looking for some more information about FASD, check out our sister site, fasdfamilies.com

We’ll be returning to our regularly scheduled programming of fun DIY’s now 😉