Fetal Alcohol Spectrum Disorders (FASD) is an umbrella term that captures various conditions of lifelong birth defects resulting from the mother’s consumptions of alcohol during pregnancy. One of the medical diagnoses echoed by FASD is Fetal Alcohol Syndrome (FAS). Although there is no known cure for FASD, individuals impacted by it are not imprisoned by the disability. The depth, affect, and overall grip that the disorder can have on those inflicted by it vary depending on the vibrant interaction between one’s own nature and nurture.
Whether you are an individual impacted by FASD, a loved one, a community professional, or a student of life, strive to encounter the humanness that is within FASD, rather than exclusively seeing the labels or characteristics of it. One such characteristic of FASD is that of brain damage, which can be apparent in areas of intellectual disability and behavioural problems. Although factually correct, what does this actually mean? And what impact does this have on an individual’s ability to self-regulate his or her state of being?
Things that may seem obvious are not always true, and things that may seem true are not always obvious. Emotions, for example, is a word that is frequently used as a means to relate, distance, understand, describe, and/or uncover the various layers of our own experience(s). Though most of us can admit to having them, how many of us can actually define the experience itself? Relating this idea back to the brain, just because it has the ability to do something, it does not directly imply that we know why it does certain things when certain things unfold. In other words, the how of its workings is not entirely known or understood. People can be consciously aware of their thoughts, emotions, and/or actions or be completely unconscious to them.
Joseph LeDoux, a neuroscientist and author of The Emotional Brain, writes how the brain itself has no actual function, but it is rather a collection of systems engaged in various functions. Not all of the brain’s workings, however, are located above the neck. In her book Molecules of Emotion, Candace Pert reflects on her scientific research to illustrate how our inner chemicals, our in-house manufacturing plants of neuropeptides and their receptors, “are the actual biological underpinnings of our awareness, manifesting themselves as our emotions, beliefs, and expectations, and profoundly influencing how we respond to and experience our world” (pg. 9). Our brain network, therefore, is more mobile than once believed. This is a beautiful insight that touches the depth of our molecular being.
1. Given the assortment of networks located within our brain structure, and the constant movement, rhythmic dancing, and vibratory manners of our information molecules, it is safe to say that our biological constitution, our nature, is not preprogrammed, but influenced by the musical tone of our environment, our nurture. Regardless of our constitution, our destiny is not prearranged. Even the densest of all forms can change their molecular structure, and in turn, their relationship to life. An individual impacted by FASD can change his or her life situation. The journey is not about choosing a certain path, but to become more aware of the current path traveled, and from there, take the next step.
Below is a list of possible ideas that can help support children impacted by FASD. The list is inspired by Diane McGregor.
- Get informed and allow yourself to be creative. Understanding the various links between the brain, mind, emotions, and behaviours is one thing; being able to apply it is another.
- Give yourself permission to be creative with your knowledge.
- Share the things that you believe you know – FASD relate or not – and voice
the things that you may struggle with.
- When sharing, be aware of your language – does it radiate affection,
compassion, and acceptance, or reinforces hopelessness?
- Allow yourself to be influenced by the child – don’t let age, developmental ability, and overall ego create an authoritative “I know best” attitude. You are in this together – the strength in rope comes from the weaving quality of every thread.
- Play is a great vehicle for nurturing togetherness and stimulating personal growth.
2. Not everything the child does is the result of FASD. FASD is not who he or she is; it’s not an identity. FASD is an impact, something that the child can give a voice to.
3. Engage the child from where he or she is at by addressing the current developmental need(s). Learning new skills may take longer, which means that repetition, consistency, and voicing your acceptance are important ingredients for cultivating the relationship.
Creativity and play are great openings for showcasing your support and understanding.
Modify your environment in a way that allows the child to feel comfortable – be aware of the child’s current sensory ability and the sensory stimulation of the environment. Do they match?
4. Provide verbal and nonverbal cues.
- Use multiple ways of communicating – words, facial expressions, sounds,colors, etc.
- Allow time for learning to unfold – your goal is not the finish line, but the journey itself. It’s okay to re-phrase and repeat your instructions. If things do not change, re-examine your goal(s) and expectation(s). Ask yourself, who am I doing this for; and for whom is this important for at this moment in time?
5. Give the child permission to be himself or herself. It is okay for them to make mistakes – not all mistakes are the result of FASD. To be human is to be imperfect; thus, mistakes are a validation of our humanness.
6. Express acceptance towards setbacks. Remember, it is not the finish line that is important, but the journey. Setbacks happen to everyone. Take advantage of them by using them as guides for the journey.
7. If the child could do better, he or she would. Similar to learning academic skills, developmental skills is a learning process that takes time. Be patient with yourself and with the child. Although stimulating learning and problem-solving skills is important, trust in the natural process of learning and the organic nature of your relationship. Without an authentic relationship, the foundation set for learning is built on a sandy ground.
~ Tudor Caliman
