Last week I finished a seven week webinar presented by an organization called Families Affected by Fetal Alcohol Spectrum Disorder or FAFASD.
The webinar was for families and caregivers of people with FASD. I have taken many courses, read numerous books, and talked with others but believe I can always learn something new. It is good to keep on top of the latest developments and research. The opportunity to connect with others who are facing the same challenges, stresses and successes is also a wonderful thing.
While some of this I may have had an idea about, much of it was brand new information I have not heard in my eight year experience of parenting a child with FASD. So here is my list of 7 things I didn’t know before that I know now:
1. The brain of someone with FASD will continue to develop until age 30.
The brain develops throughout our lives; however, it is generally accepted that the brain of a neurotypical female matures by 18, and a male by 25. New evidence shows that a person with Fetal Alcohol Spectrum Disorder (FASD) will continue to experience maturity up to age 30.
While it’s likely most people with FASD will require support throughout their lives, this gives hope that a great deal of learning and growth continues into early adulthood.
2. FASD is the forest – ADHD, OCD, ODD, Anxiety, etc. are the trees.
Many people are misdiagnosed with secondary disorders before, if ever, they receive a FASD diagnosis. The behaviour that brings a child to the attention of a doctor or therapist is diagnosed as Attention Deficit (Hyperactivity) Disorder, Obsessive Compulsive Disorder, Oppositional Defiance Disorder, etc. When really the behaviour is a result of the effects of alcohol exposure in utero. Secondary disabilities can also occur when a person is not being supported in a way that works for them.
One key here is that many of the strategies that work for a child with ADHD or ODD will not work for a child with FASD. For example, many children diagnosed with ADHD have trouble with math, organization, time, impulse control, etc. Many people diagnosed with FASD have trouble with these same areas. You can teach skills to someone with ADHD because he or she can store and retrieve the information given. You can teach these same skills to a person with FASD but he or she does not have the same capacity to store and retrieve the information.
My daughter is almost 16. She still struggles with all of the above. She is at a level much younger and may never have these skills. Consequences do not work for her. Therapy and counselling do not work for her. Modelling and patience do. Someone with ADHD will likely be able to live on his or her own. My daughter will likely never be able to live independently – she will likely require an inter-dependence lifestyle.
I wish I would have known this sooner as I would have spent less time on trying unsuccessfully to respond to ADHD and ODD and more time on accommodating the FASD.
3. FASD is an invisible physical (brain) disability with behavioural symptoms.
I always explained FASD as an invisible disability – but it isn’t. FASD is a physical disability that is not immediately noticeable. It is the brain and different systems in the body that is affected. We cannot see the brain – but the brain is physical. The physical FASD symptoms we see are behaviours – which are usually misdiagnosed or misinterpreted as the individual lying, being difficult, lazy, manipulative, etc.
People with FASD seem capable. Their outward appearance is typical if they do not have any of the facial features. A small percentage of people have the outward physical features. The vast majority, like my daughter, do not have any facial features. She talks the talk, but cannot walk the talk.
4. People with FASD may eat more or more often.
It takes a greater effort for people with FASD to cope and maneuver our world. This requires energy. Food gives us energy. So if your brain is working harder than the neurotypical person, it makes sense you need more fuel to keep going.
My daughter is always hungry and always eating. I always thought it was her meds, which do contribute, but now I watch for when she may be stressing or have high anxiety – because she will eat.
5. Different parts of the brain control different functions.
I knew this, but sometimes it takes a specific example to clearly show me what that means.
For example: if you ask your child to do something and they take longer than you think they should – consider there is a brain-based reason for the delay. Perhaps the section of the brain which controls the processing of the information you just gave is delayed – or the ability to verbally respond is delayed. The information may not be stored in the brain. Your child may not remember how to respond or know the steps required to complete your request.
6. The vast majority of interventions in our world are to “fix” or correct behaviours.
FASD is brain based. A person with FASD cannot “fix” their brain – no matter how much you may want him/her to. You need to learn how to accommodate the person. Think: What do you need to start or stop doing? Does the environment need to be changed? Are your expectations too high?
I had ideas about this – as my daughter has been to therapist after therapist for social skills, anger, impulse control, etc. etc. In the last couple of years I began to realize that it wasn’t working. This piece of training was a much-needed confirmation for me.
7. Throw away your assumptions about how a child is supposed to behave, be parented, be schooled, etc.
It doesn’t matter what works for the vast majority of people. It does not work for people with FASD. Their brain is wired differently. They will grow and develop but it will be at their own pace. They may never reach your expectations. And that is okay. You need to learn how to match their ability.
This is an area that for most parents happens after trial and error. And then there is guilt for trying all the methods and not understanding why they were not working. Then there are the opinions of friends, family, neighbours, schools, professionals. The only advice I can give is do what works for your child. No matter what anyone else thinks.
I have lost friends and family. I have given up working for now. I have kept my daughter at home with a tutor rather than going to a school that won’t accommodate her. I do what I believe is best for my daughter because I know her. She is not like everyone else. This world is not yet made for people like her. But with enough education and training eventually the world will be accommodating. It’s sad really that the world holds a specific standard, when everyone is valuable and has gifts. There is no standard. We are all unique. But until the world is more accepting, I keep her world small.
There is much more information now about FASD. The information I have shared is not endorsed by FAFASD – I have no affiliation other than taking the course and sharing information as I understood it.
If you are interested in learning more about the webinar I took, check out: FAFASD.