We are at a critical point now advocating to get the Minister of Education to bring forward Bill 191 to amend the Education Act to include FASD for a second reading in the house. Ten days is all we have. If you haven’t written to the Minster and your local MPP, take some time this weekend to get your letters sent. This may be our only opportunity to get FASD the recognition it deserves and the accommodations our children need and deserve.
We are not feeling very hopeful that the Minister will bring forward the Bill as detailed below in a series of correspondence between Mark Courtepatte, Co-chair of the Hamilton FASD Parent & Caregiver Support Group, constituents of Minister Naidoo-Harris and her office. If you care about this issue, please don’t leave it to others to write letters – the Minister needs to hear our voices on behalf of our…
Never judge an FASD parent until you have walked a mile in whichever shoes they have managed to get on their feet today.
“All that kid needs is a bit of discipline”
“Why is that woman on the beach just popping seaweed instead of stopping her son swearing at the top of his voice?”
“Have you tried controlled crying, the naughty step and Super Nanny techniques – if you persevere, those methods will work”
“Well it was your choice to adopt. You knew what you were getting into”
I bet you have heard something like this said about the FASD parents in your family. You may have thought similar yourself (go on, admit it, you have. I will admit it, I thought it). I went along to the latest FASD Support group that my brother and sister-in-law run and I listened to reports of the above attitudes.
Internal Understanding of FASD Nuclear Reaction Meltdowns
Guest Blog by Savanna Pietrantonio
Savanna is one of our beloved FASD Survival Strategy Teachers
In an effort to reframe my understanding of meltdowns I’ve had to look deeper into the meaningful gifts of the meltdown and to change my fear and shame into acceptance that they are always going to be my body’s unique way of communicating with me.
I can go about my life for weeks accomplishing, learning, overcoming and shutting off or hiding the FASD part of me. But I feel everything intensely and emotional and physical distress is a daily part of living with the disability. In my attempt to hide my disability, act normally and bury my feelings I forget that this is not being true to my disability or myself. And my body lets me know. Usually through a meltdown of epic nuclear reaction proportions!
I have to learn to respect the meltdown as a symptom of brain damage. I am not being willful, rebellious, purposely destructive or hateful. My brain is telling me that something is wrong and I need to stop everything and ask for help to both get through daily life and to regulate my emotions.
I have discovered eight situations, which cause stress hormones to flood my system, and unfortunately my brain is not equipped to cope with the overload I am asking it to handle. Sometimes I can handle one or more, but as they add together as life often will, there may be no stopping the ensuing meltdown.
Eight meltdown situations
Social situations where I have to “be on” for extended periods
A change in a set schedule or a plan I am expecting
Fast paced days where I am thinking and processing constantly
Or the opposite-days when I am wandering “lost”
Anticipation of an event even if it’s a positive one
After the event, the letdown and “what’s next?” feeling
Something new being introduced into my life- a skill or an object
An expectation that I fear I cannot meet
Neurotypical people can manage inherently as the brain balances their self-regulating neocortex with their limbic emotion regulating system—‘wise mind’ and ‘emotion mind’. My brain because of prenatal alcohol damage can’t do that. Messages between these two parts of the brain get stuck like tangled Christmas lights and I am triggered into an emotional spiral down the slippery slope to meltdown.
To the best of my ability I can tell you that the warning signs of a meltdownbefore or after any emotional high or low are there. Both my external brain and I must be on the lookout and aware of them. If the warnings are missed the overload becomes unmanageable. These signs present themselves ahead of the event or days to a week afterwards.
17 clues of an ensuing meltdown:
Restless, interrupted sleep, night terrors (others have vivid dreams)
My heart feels like it is racing and an uneasy sense of dread or urgency
Boredom (really not knowing what to do next-directionless)
My surroundings become cluttered (suddenly I can’t pick up after myself)
The tired but wired feeling
Inability to focus on one thing but the impulse to multitask to the extreme
Defensiveness and extreme sensitivity
Acting withdrawn and feeling alone and isolated or isolating
Itchy skin and breakouts
Fidgety movements like uncontrolled scratching (others may pick or bite a part of hand or area of body – bottom lip)
Easily frustrated to the extreme (slamming doors or verbal aggression)
Obsessions over unrelated things and agitation with them
A profound sense of sadness or unexplainable loss
The feeling my brain is full and slow, like when you overeat and your stomach feels uncomfortably full
Spending money carelessly and in excess
Before a crisis can occur its critical to stop the spiral by having a compassionate, understanding, non judgmental external brain who has learned not to take your behaviors personally, step in and guide my thinking, give me a perception check or just show care and not let me disconnect. This is not easy as my behaviors are shouting for help while pushing people away at the same time.
I may say something very hurtful when my external brain says, “What can I do to help you?”
“You can die!” I shout because I don’t know what he can do and my brain is no longer connecting to the part of me that can share thinking and feeling.
But there really are things he can do to help me and they really do bring down the energy and place my life back into a state of regulation.
Hug me and say I understand. “This is because…” and name it for me
Hold me while I cry and listen while I try to get my feelings out. This may be for more than one day as perserveration is at its most intrusive
Help me pick up the scattered brain puzzle pieces and put them into order.
My external brain maneuvers my day, stepping in and canceling appointments or doing a task for me so that I can include self-care and put downtime into that moment.
Provide direction—one direction only please.
Break down my day or task into single doable steps.
Becoming compassionate and nonjudgmental.
Or I need to be told to stop all my activity and go rest.
And provide time for me to complete self-care:
Sometimes I need a complete escape and to have a fun, new adventure — this builds neuroplasticity.
I focus on the foods that build a healthy brain-walnuts, salmon and dark chocolate—the magic trifecta for calming. Drink lots of water-mild hydration causes tiredness and fatigue. And if we’re not talking nutrition- banana bread, carrot cake, mac & cheese, spaghetti. The things that comforted me in childhood. Baking these things can be surprisingly sensory and calming.
Sometimes I need to get to a yoga class to reconnect mind, body and spirit or I need an aggressive cardio workout that burns off the adrenaline and cortisol.
I need an intervention so that I can concentrate on the work of really surrendering to my emotions appropriately, processing whatever it was that happened, talking out my feelings and fears, feeling compassion for myself and coming to a letting go of it. It is exactly like the work of the grief process. If I skip this step, the symptoms become very aggressive and I am propelled into full fight or flight reaction and I explode with emotion and nothing and nobody is safe from the destruction or self-loathing I feel. This is where I can hurt myself, others and possessions. (Note: some people shut down and freeze.)
Handling a meltdown with love
While my external brain or myself can’t always read my bodies clues, I have learned to meltdown more appropriately as I begin to trust the process.
We have set some guidelines:
I can’t run away, especially by driving, but staying in trust and working through the intense situation and he can’t leave me at that moment or I am unsafe.
No arguing when glass things are within throwing reach – find a safe open place to work through the issue and I have a sensory or squishy toy in my hands instead.
No swearing (this is so hard when I don’t have words).
A pact I made with God and myself is that I will not engage in self harm or use substances. Ever!
I am not to strike out in anger at him.
I am not to say hurtful, blaming things to him about the past.
We have personal space boundaries and if losing it is imminent my external brain cannot—imperatively—cannot react with anger and punishment or aggression and he must not come into my personal space.
Sometimes though unfortunately he has to just hold me down and use extended breathing techniques and calmly stroke my hair and tell me I am loving and loved, all is well and I am safe in a soothing voice over and over again while I kick and scream and cry until I am exhausted and its all gone and I’ve let go of my fear, urgency and panic.
Triage after the storm
Afterwards the storm really is over and I can be helped into a calm environment where he can prepare a bath (running water is soothing) with dim lighting, zen music and calming lavender or other essential oil, while I drink a magnesium supplement or I need to be soothed to sleep with weighted blankets and soothing guided meditations playing while he rubs my back or uses tapping on me.
It is possible to get to the place on the other side of the meltdown to where you can look at it and see where intervention might have stopped the spiral and what might we do differently for the next time. And reinforce that what my body was telling me is that I need to heed its signals. By understanding and reflecting back I can empower myself when I list these and review them.
The gifts of the cathartic meltdown are the stillness afterward that allows for more clarity It allows me to see what I need to let go of and what I need to clear space for. It reminds me that I can empower myself by respecting my FASD and that I have to act authentically and within my own trueness not separate from it but within in.
I no longer need to feel shame, as I know God made me exactly how He wanted me to be with unique built in ways of communicating my needs. I’ve come to embrace and be comfortable in the discomfort knowing that every emotion felt will pass if accepted and felt with compassion.
I can return to the path of “Buddha-nature that is found within suffering and our relationship to it, not by escaping it.” 1 The taking care of self becomes easier and better the more often you do it and the more your heart and soul become aligned. After all, the Spectrum is halfway to spectacular.2
September is FASD Awareness month. As a member of the Toronto FASD Network, we are joining the Red Shoes Rock campaign to raise awareness about this preventable disease. To recognize this important initiative, the Toronto sign will be lit up in red on September 9th, and we’re asking you to help us spread the word by wearing your red shoes throughout the month of September to bring attention to the impact FASD has on individuals and families.
What is FASD & what does it mean for baby?
Fetal Alcohol Spectrum Disorder(FASD) is a lifelong disability that has no cure. FASD is a term used to describe the range of lifelong physical, mental, behavioural and learning disabilities that can occur only in individuals whose birth mother drank alcohol during pregnancy.
FASD is totally preventable. The safest choice in pregnancy is no alcohol at all. In fact, it’s never too…
Dear Teacher, I have FASD. I have a hard time hearing everything you say. I try, but sometimes I just don’t understand. It’s hard for me to understand the directions you say. Lot’s of times I forget as soon as you say what I’m supposed to do. I look at others, not cuz I want to cheat, but cuz I want to know what I’m supposed to do next. I know it seems like I’m not paying attention, but I just don’t understand.
I’m not lazy. It seems like I dont want to do my work, but I do. I’m just not sure how to do it. If you tell me exactly what I’m supposed to do a couple of times, I might understand better. You might have to explain it to me with no one else around.
My senses are really sensitive. Sometimes I need breaks from the classroom…
2018 Update: Last year, each of these components were described for days 89-98. However we decided to combine them this year into one day and provide different information for the next 9 days. Stay tuned!
The information for Day 89 is used with the permission of CanFASD – I encourage you to visit their webpage to download a copy of the PDF Document which includes references for each of the components.
10 Fundamental components of FASD prevention from a women’s health determinants perspective
The following ten fundamental components of FASD prevention emerged from a working session of the Network Action Team on FASD prevention. This session was held in Victoria, B.C., in March 2009, and was funded by the Canadian Institutes for Health Research. This consensus document weaves together a range of sources—women’s experiences, peer-reviewed research, published articles, as well as expert evidence—to create a clear message regarding the…
When I was a child, long before my diagnosis of FASD, when everyone suspected I was just down, depressed, overwhelmed, lazy and told I just don’t care about anything. My mum would say “your in a black hole” and you need to get out of it. She was right, as mums always are, but back at the young age I never really understood what she ment, or how I was supposed to just get out. It’s not so easy when you don’t really understand what is going on in your own mind, it was always pinned to some traumatic event I had been through, the death of my father, or my class mate being murdered during summer holidays, or some other tough life event that I had not gotten past, and more than one councillor seemed to find me a lost cause. Later on once I began drinking, the alcohol…