For the first five years of my daughter Ainsley’s life we spent countless resources trying to figure out ways to help manage her disability. Fetal Alcohol Spectrum Disorder is incredibly tricky to diagnose, and then to manage on an average day. FASD is fetal alcohol spectrum disorder, an invisible brain injury brought on my prenatal alcohol exposure.
In Ontario we are likely 15 years behind the autism movement and advocacy effort. I have been told this by many experts in the education and health care fields. So, in the province where I live we have very limited resources right now. It’s likely my child will likely never receive the exact educational or health support she needs as a child in systems that are bound by the current policy and curriculum.
So how do FASD Caregivers Succeed?
PEER to PEER support is Invaluable
The FASD Webinar Series
A Public Health Crisis
FASD is a public health epidemic. Prevention is incredibly important. But, what of the families who struggle to parent, educate or care for children with this complex diagnosis? Some children with FASD manage at school. Some blow out every educational situation they ever had. Many are homeschooled out of necessity.
There is No Magic button for FASD. But, there are strategies. The trick is getting good at numerous strategies, because FASD is a wide spectrum and what works one day might not work the next.
Christopher Boys, assistant professor of paediatrics at the University of Minnesota Medical School says it makes sense to have a “constellation of strategies that work.”
Alternate through as needed or combine and sometimes you just have to think outside of the box.
Ten Strategies To Help a Child With FASD
1. Prepare them to Switch Subjects:
Kids with FASD often have difficulty transitioning from activity to activity. Change is particularly difficult. So have numerous reminders in several different learning styles. You might have a visual schedule, coupled with cuing, coupled with a smart strategy asking the child to carry something heavy (lifting can be grounding) to a different room. There are also numerous sensory tools and toys that can help with transitions. What doesn’t work is suddenly expecting someone with FASD to get off the computer when the bell rings and run outside with everyone else (that’s a recipe for meltdown.)
2. Chunking of work material:
Children with FASD very often tire faster than others. Some have difficulty with fine motor skills and some have trouble with hand eye coordination. Chunking work sheets into smaller amounts can help.
3. Frequent movement breaks:
Attention deficits are common. Movement breaks help. One year a really clever educational assistant would have my daughter throw the basketball in the gymnasium about 10 times first thing in the morning before she made it into class to manage seat work.
Some have difficulty with writing. It takes longer and their hands often fatigue quickly. So often scribing can help them to finish their work to an acceptable level. Although remember their work load may need to be reduced based on realistic educational goals. This is definitely the case with my younger daughter. She now, finally in 2018, has assistive technology to help her do this.
5. Activity based learning:
We taught my daughter the alphabet on a trampoline. She needed to jump to actively learn that skill.
6. Resistance work:
Ripping paper, shredding paper, pushing something heavy. This often helps to give kids with FASD the muscle feedback they need. Row row row your boat with another person worked when she was smaller, at preschool age. Big bear hugs and crashing hugs also helped her to get the feedback she needed.
I have updated this in 2018 to indicate that as she got older she used heavy backpacks and lifting heavy loads of materials for teachers. In grade seven and eight this helped her immensely.
Gum and chewy tubes often help to keep kids with sensory issues focused and organized.
8. Engage in activities for a shorter amount of time.
End on a successful note. Don’t push it.
9. Adjust Your Expectations:
When my daughter was little we often had plans. Let’s take a drive to Kitchener to visit our relatives. Let’s go shopping for X. Let’s go browse the book store. We rapidly learned that she often couldn’t manage that on a certain day. So one of us stayed home and kept the day calm. Pushing her into the situation would have meant a full meltdown which made everyone’s day chaos.
Kids with FASD can often learn but they also often require consistent repetition over a longer period of time than neuro-typical children. My daughter learns quickly sometimes and has great frustration when she doesn’t. Repetition helped her gross motor skills to grow as well. Gross motor activities such as martial arts and dance can be useful helping over long periods of time to develop muscle memory.
Support is CRUCIAL for Child and FASD Caregivers Too
Never underestimate the importance of supports when parenting a child with any special needs. FASD Caregivers tending to children with this diagnosis can burn out fast and are often felt to be ostracized and isolated. Meltdowns and children who look 10 but act 5 can be difficult to understand in the social context.
Seek a support group on line, or in person to help. Boys noted this can be crucial to the success of a family caring for a child with FASD.
A Final Word:
This is the last in a series of posts on FASD here at Thrifty Momma’s Tips.
My blog has partnered with MOFAS and Brandfluential as part of a sponsored campaign to spread awareness about fetal alcohol syndrome prevention. Any topic matter that helps people better understand this disorder will always be close to my heart. When I write about FASD, I am better able to help my child. And I am better able to help the world around me understand and frame her behaviour.
What strategies have you learned to use if you parent a child with FASD?