Last weekend, I had the privilege of attending the two-day, 1st Annual Eastern Ontario FASD Symposium in Ottawa. The event’s special speaker was Kim Barthel, Occupational Therapist and international speaker on neurobiology and sensory processing. Kim shared amazing stories from her experiences and a wealth of information gleaned from her research as well as the research of other professionals in her field.

It is too difficult to share all of the information but here are a few key takeaways that resonated with me personally:

  • The only thing that I can change is myself or the environment
  • Our tone of voice and facial expressions can trigger meltdowns or help regulate a disregulated person
  • Remembering that behaviours are signposts and we have to become a detective to discover the cause of the behaviour
  • Relationships and compassion have a powerful influence on healing

Many who are in relationships have probably heard that you can’t expect to change your partner, you can only change yourself. As a parent, it’s easy to get caught up in correcting your children or giving your opinion of something they need to change. But in all relationships and especially when caring for an individual with FASD the only thing you truly can change is yourself or more specifically, how you react to the individual’s behaviours and what expectations you have for them. Disappointment, hurt feelings or frustration usually are a result of unmet expectations and we have to take the opportunity to ask ourselves, “What are my expectations here and am I expecting something that is unrealistic for this individual?” It may be a helpful exercise to read through the primary characteristics and remind ourselves of the areas that these individuals may struggle in while also remembering that they may just simply be having a bad day. We may find that we need to change our expectations or we may need to come up with ways to support or accommodate the individual so they can achieve success.

This leads into the only other thing we have control over and that is changing the environment. We know that individuals with FASD struggle with sensory issues so it’s important to maintain environments that work with the unique sensory needs of each individual. There are two sensory behaviours: sensory sensitive and sensory seeking. Sensory sensitive as the name suggests means that individuals experience sights, sounds, touch, movement, smells and/or taste with a higher intensity and may need lights dimmed, a quiet area, softer clothing turned inside out or a bare room with little decoration to work or sleep in. Individuals who exhibit sensory seeking behaviours don’t experience the senses very well and crave stimulation. These individuals may be on the move constantly or bump and crash into things so may benefit from heavy physical exercise. Each individual has unique needs and some experimenting may have to be done to find out what will work for them in different situations. By meeting the sensory needs of individuals it contributes to a better emotional and mental state for them to process language, learn and regulate themselves.

One of the hardest parts of living or working with an individual with FASD is experiencing meltdowns or disregulated behaviours with them. Depending on the intensity it can be a very frightening, frustrating or upsetting experience. Kim explained that we need to be mindful of how we use our voice or our facial expressions because they can trigger or escalate behaviour. Think of times when we get frustrated with someone, our voice gets louder, we speak faster and our facial expressions show our emotions with scrunched up brows and a frown on our face. How does the individual react to this? My son tends to put his hands over his ears and turn away! My daughter gets angry and frustrated herself. That’s when I know I have to take a breath and calm down. Kim also explained that our voice and facial expressions can be used to help in calming an individual experiencing a meltdown by using a lower voice and speaking fewer words with a compassionate face (soften and open eyes, neutral mouth) giving the individual our undivided attention or even by just sitting quietly (holding space) with them. Remember, even in a calm state individuals with FASD have difficulty processing language so when these individuals are worked up emotionally they are NOT ABLE to hear us and process what we’re saying. She made the point that, “a non-regulated person needs to be with someone who can hold it together and let the person express themselves til they can regulate themselves.” Through our verbal and non-verbal actions we can help individuals feel safe and accepted.

Kim reminded us that behaviours are signposts. We shouldn’t get caught up in the behaviour itself but look at what caused it. We have to become a detective to discover what is not working for the individual. Some questions we can ask are: “What does this behaviour communicate; is there something wrong in their environment such as noise level or brightness of lights; do they need to do some physical activity; is the task they are being asked to do too difficult?” Quite often as caregivers we get caught up in the pursuit of strategies. We often think, “If I just had a strategy to make this stop!” like a magic spell that will make it go away. But Kim encouraged us to look at challenging behaviours as opportunities to learn and develop greater compassion for the struggles that individuals with FASD have (yes I know, harder said than done, especially in the midst of being yelled at and being called every name in the book). We need to remember there is always a reason for the behaviour.

Woven throughout Kim’s sessions was the importance of connection and compassion in healing individuals who have experienced early trauma either through prenatal alcohol exposure or an event. When I say healing I don’t mean all of a sudden becoming a neurotypical person and acting like nothing happened. What is meant is that when an individual with early trauma is consistently cared for, accepted and supported in a nonjudgemental environment they feel better about themselves and have a firm foundation to grow from where they’re at. Obviously, these situations can be highly complex and take years to work through, depending on an individual’s experience, but with professional help and caregivers who nurture relationships based on genuine compassion and acceptance then individuals can often have successful outcomes.

As I mentioned in the beginning there were so many examples and so much information shared that it’s impossible to include everything here so I invite caregivers to join me at the next FASD Caregiver support group meeting on Tuesday, April 11, 2017 where I will go through more of Kim’s presentation. For more information about Kim and her work, visit her website: www.kimbarthel.ca

As a final note of encouragement, we were briefly visited at the symposium by Ottawa Centre MPP Yasir Naqvi who said that the Ontario government was planning on having a funded, multi-ministerial strategy in place to combat FASD before the end of its current mandate (the next election). Let’s hope, I guess time will tell…

Read the article:

The ‘Invisible Disability’: Ontario to fund strategy for fetal alcohol brain disorder, says Naqvi