While there is no “cure” for FASD, there are a variety of ways to support someone with FASD. Treatment here refers to the manner in which someone behaves toward or deals with someone or something.
One of the most difficult things for me to “wrap my head around” was how children with FASD are so similar, yet very different. FASD is a “spectrum”: A spectrum is used to classify something, or suggest that it can be classified, in terms of its position on a scale between two extreme or opposite points. While many with FASD can have similar characteristics, those characteristics can present very differently. That is why what might work for one person, may not work for another.
I also learned most of the “usual” parenting strategies do not work for our children. The maiden came from a foster home that gave time outs. Remember Super Nanny? She always had parents use time outs. We started with time outs – but a time out requires a child to have the ability to self reflect on his/her behaviour and learn from it so the same action will not be repeated. Many children with FASD do not have the ability to sit and “think” about what they did. So time outs for us went out the window pretty quickly. On the flip side however, there is a book/program called 1-2-3 Magic, that many say never worked for their children with FASD. I found it worked great with the Maiden.
Diane Malbin, a clinical social worker and founder of FASCETS, coined a phrase that becomes the mantra for many parents: Try differently, not harder. (More will be shared on Diane’s approach in coming days). We must learn to accommodate the child. Change our approach and reactions to change our child’s reactions. It sometimes takes a lot of detective work to uncover what is going on, but if you learn to think outside of the box and respond to what your child needs, not what you think he/she needs, you will save yourself (and your child) a lot of frustration.
We also discovered that typical “counselling” does not work – again, because this involves self-reflection and the ability to understand what it is being said and to apply it to the situation. The maiden went to various social skills groups, and although understood in the moment, and could repeat what she learned, she didn’t always have to ability to transfer the knowledge into another situation – unless it was exactly the same.
Mindfulness is a program that works well for many people, including people with FASD. We tried mindfulness (on more than one occasion) 1 Week 1 Goal: Meditate Daily and while it definitely worked for me, it didn’t for the maiden or the crone.
I remember the Adoption Worker told me one of the reasons I was chosen over two other applicants (both couples) was because she felt I was a very creative individual. Little did I know at the time how much that creativity would serve me over the coming years! I have read a lot, been to many workshops, trainings and support groups. I try something, if it works I use it, if it doesn’t I tweak it or drop it and try something else. I try differently, not harder!
For more information on today’s graphic, check out CDC Treatment Plans. Feel free to comment below if you’ve found approaches that work or did not work or have suggested websites or articles to share.
2018 Update: Some additional information about therapy and medication can be found on Day 31 of 99 Days to FASDay: FASD and Therapy.
Little advice currently available to physicians
A team of international experts at the University of Saskatchewan are meeting today to discuss developing medication guidelines for fetal alcohol spectrum disorder.
The group of 10 wants to devise a “medical algorithm” to aid physicians in prescribing medication to FASD patients. The disorder is the result of a woman drinking alcohol during pregnancy.
The goal is to make sure that the algorithm really helps the individual to function.– Dr. Mansfield Mela , University of Saskatchewan psychiatry professor
The idea is to examine the various complications that people with FASD face, such as inattention, difficulty planning, challenges in relational situations, and issues with mood and sleeping.
Then, the group will recommend medical guidelines instructing doctors what to prescribe “so that when a physician says to his patient, ‘I need you to take this medicine,’ they’re going to be doing it from an informed position,” Dr. Mansfield Mela, head of the psycholegal and FASD research lab at the U of S, told CBC Radio’s Saskatoon Morning.
The selected medicines and any side effects will be monitored, and secondary options will be included in the algorithm should the first choice not work out.
“The goal is to make sure that the algorithm really helps the individual to function,” said Mela.
There are currently no guidelines for treating FASD. Mela said this leads to physicians often using a “trial-and-error approach.”
It also means FASD patients sometime avoid treatment because it’s inadequate or due to side effects, he said.
Mela added that FASD is a relatively new diagnosis, which means the medical community hasn’t yet had time to sufficiently develop guidelines for doctors to treat it.
Despite this, Mela said physicians have recognized FASD is a complex condition requiring a multidisciplinary treatment approach.
“We’re very fortunate that so far our patients that are being diagnosed still have some support to ensure that they function in life,” he said.
Dr. Manfred Mela (University of Saskatchewan) has been the lead researcher developing the first-ever psychotropic medication algorithm for FASD. The expert panel is in the final phase of development for the algorithm and it will be widely available as soon as possible.
From the University of Saskatchewan
Dr. Mela, the lead researcher developing the first-ever psychotropic medication algorithm for FASD and the expert panel, are in the final phase of development for the algorithm and it will be widely available as soon as possible. If you would like to request more information, please contact firstname.lastname@example.org
If you would like to request more information, please contact email@example.com.
Stay tuned as we continue this 99 day journey with additional tips and strategies.