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 😉


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Comments

  1. I’m truly sorry you have to make this hard journey. I’m sorry for the boys too. I can tell you here and now it won’t get any easier, but I hope the boys learn to…find detours.

    • That’s exactly it! We try to find detours to help them learn differently. Some days are great and others are kind of a disaster. One of the hardest things about this is knowing that it will always be like that. Acceptance is hard but it’s probably what needs to happen for all of us parenting kids that are “different”.

  2. Thank you for sharing this. We adopted our two boys from Foster Care five years ago. They were 5 and 2 years old and are half brothers. We don’t know exactly what they were exposed to but we know there were drug problems and neglect. They are so handsome and talented, but what a struggle it’s been! In the beginning they were both diagnosed with anxiety. And it was obvious. Our oldest, since then, has struggled tremendously in school. He has been diagnosed with ADHD, depression, ODD, RAD, and possible PTSD, but never FASD. He has had three therapists and we have taken several parenting classes. In desperation , we spent a disgusting amount of money and put him in Brain Balance for three months which did help despite all the fighting he put up when having to do the required exercises. Through Brain Balance we were able to get him off all three of his medications. He is so much happier off the medication that now seems to have helped only to keep him sitting in his seat. Now that he’s off the medication he still has the same issues at school but he smiles more and can’t stay in his seat. It’s hard to see him struggle so much academically and we can’t help but worry about his future success in a job, as a husband and father. So still in desperation, we reached out to a contact in the foster care system. With all his diagnosis, she suspects FASD. She recommended a therapist specializing in adoption, attachment and trauma issues. We were surprised when he told us he sees the facial features in our younger son who has only been diagnosed with ODD and thrives academically (thank heaven!) but not our oldest who has the most problems. It seems backwards. Do you have any ideas why? We wish we could have started with a FASD diagnosis and by passed all these years of trying to figure out what was wrong with our oldest and saved so much time, energy, heartache and money at the same time. But what do we do now? We’ll keep going to our new therapist, but what can we do to help him in school? We just put a 504 in place. (We didn’t know about a 504 until the end of 5th grade! He’s now in 6th but would probably be more comfortable in 4th grade. But what can you do when the teachers keep passing him on?) Is there a special school for kids like ours? He’s smart but he can’t focus, sit in his seat, and his brain fatigues quickly. He is forgetful and unorganized. If he could draw, sing, read (thank heaven again that he loves to read!) and play his way through school he’d be top of the class. Writing, math and science are too difficult. He does great speaking and understanding Spanish but won’t do the homework because he has to write and think. ( I hope all these details are helping someone else in this situation.) Thank you again for sharing your situation and for the patience and love you show toward your sons. You are a very good example to me because it’s very easy to get upset and negative towards my boys without understanding why and what the problem is. I wish I could climb inside their heads just to see how it is for them and how they see the world. Thanks again!

    • I have never heard of any of these programs you’ve mentioned but that’s probably because I live in Canada.
      Please email me or find us on FB and we can chat further….. https://www.facebook.com/groups/ParentingFASDkids/
      I joined this group awhile ago and I’ve learned more here than from any social worker we’ve worked with. I’ve found it pretty typical that foster/adopt parents have more answers since we live with our kids full time. I’m willing to bet that ODD is a misdiagnosis and FASD would be the answer. Medications work for some children but not others.
      My oldest boy presents with classic ADD symptoms….that’s just fASD in disguise. Getting the correct diagnosis is key so you can start treating/managing the real issue. There is no cure but there are ways to work with our kids so that they function better.
      And, I hear ya about the frustration. It’s not always rainbows and unicorns over here because I’m not always patient and loving. These kids are hard and I often hear the frustration in my voice when I say “What is wrong with you that…..?” And then I remember. Sad. Looking forward to chatting with you further if you want to email or FB.

  3. How does FAS differ from children’s born to mothers who abuse drugs during pregnancy?
    I have heard about FAS years ago but, never knew any information on it. This is something that you never see printed information in the doctors office or, anywhere else for that matter.

    • Good morning!

      As a former social worker in child protection I saw lots of babies born to drug addicted mothers and while they struggle with withdrawal and many need weeks of methadone at birth to come off the drugs, they largely do okay and we haven’t seen the long term systemic damages as we do with children exposed to alcohol. Having said that, there are lots of babies who haven’t done all that well for a variety of reasons, many likely due to drugs but there are other factors that play in as well, including the environment they are raised in.

      I think part of the issue is that we made a war on drugs but drinking is part of every day life and yet drinking is the one substance we know damages developing brains and bodies and the damages are permanent. Education is key and we’re working on training our medical residents where I live by having FASD workshops, education, and conferences and yet I still hear pregnant woman saying a little doesn’t matter. It all matters. Abstinence is really the only answer during pregnancy because it’s just not worth the risk.

      The other thing I saw frequently is an inability of doctors or therapists to ask the questions without shaming the mother. Many mothers will lie about or minimize drinking because they know it’s wrong. One time I had a baby admitted to my caseload and I could tell just by looking at him and doing a basic exam that he had been exposed to alcohol during pregnancy. It wasn’t until I met the birth mother six months down the road that she confirmed she didn’t drink while she was pregnant. So I asked her how far along was she when she found out….14 weeks!!! Prior to that she’d been drunk most days. She quit right away but this little man is profoundly damaged and always will be (I still stay in contact with his adoptive parents and I cringe when I see how the family struggles)

      Sorry that was such a long answer but I’m so passionate about FASD as it’s totally preventable. On that note, I’m taking my boys who are now 5 and 6 to the Dominican Republic for a week, leaving this afternoon. They are wonderful travelers if they have clear structure and know what to expect ahead of time. They get a little crazy coming home because they’ve been so overstimulated but we rarely have anyone say anything except how lovely and well behaved they are. (Had to throw in a small brag there!) Sadly, that’s not the experience for the family of the little fellow I mentioned earlier.

      Thanks so much for asking about FASD….spread the word!

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