In our home, we find a great deal of joy in the treasures of the past generations. We have collected, over our 37 years of marriage, all sorts of paraphernalia that reminds us of the lives our ancestors would have led……. the simplicity and purity of their tools.. ….the basic logic behind their lifestyles that has been sacrificed with this “instant” world we now live in….this unrealistic world in which everything is already done for us by another before us, often without our recognition of the process. There’s a comfort in understanding the reasons things are the way they are in the world around us…..something very satisfying about thoughtfully setting your hand on the well worn handle of a hundred year old tool, and imagining all of the creative things it would have accomplished over the years.
When those living with FASD encounter new situations, whether it be with changing circumstances in their home, or new horizons at school, or communitiy involvements, they know an amplified trepidation. New situations can be frightening for us all, but the need for a familiar stability is increased with a mental disability.
Somehow we’ve come to think that all children everywhere will find the stimulation of new and thrilling adventures a positive and enriching journey, but it has been our experience that the repetitive, familiar, known, routine pleasures of life are often what bring the most comfort to many children, with or without disability.
We are wise to acknowledge the busy messages our troubled and frenzied society is speaking into our lifestyles, and weigh them judiciously against the unique and intricate fragility of each of our children as individuals. Our job, as their parents is not to make them fit into this frantic world, but to teach them to respect who they themselves are, embrace what they were specifically created to bring to the world, and not settle for anything in life’s journey that doesn’t fit them properly.
It is only when each of us has understood this principal that we truly can bring added strength and encouragement to the lives of those around us……………….stability.
When I listen to my grandchildren playing, I sometimes hear my mother’s voice. What an awakening! It’s mind-boggling to understand that every word we say, and every action we take, starts an infinate thread of thought and response, and could affect untold lives for untold generations. This doesn’t mean that we stop talking, but that we use the power of every moment of communication to bring the ideas we love and cherish the most to life.
In raising a family, with or without disabilities, we hold the key to the way they will see themselves and the world for the rest of their lives.
A story is told of Patrick. He was new to his community, and lonely, and had been asked to join a large multi-generational family for their Sunday dinner together. As he arrived, he was gobbled up into the happy bustle of the home, and given a job of mashing potatoes to make him feel more a part of things. As he helped in the kitchen, he noticed that the hostess had cut the end off of the ham, and cooked it in a separate roaster, eventhough there was plenty of room in with the larger piece of ham. He asked her why she had done that. She looked blankly at him and said she’d have to ask her mother, who was setting the table, because she’d always done it that way. Grandma, when asked, said that her mother had always done that because she only had a very small roaster.
The limitations we percieve in our current lives will not necessarily be those our children face……………..unless by our words and deeds, we teach them so!
We have a son who was diagnosed with Type One Diabetes in his early teens. He has a strict daily routine to see that he stays well, and in the years since learning he would have this condition for life, he has understood how vital keeping track of what is going on inside of his body is to his overall well-being. He knows that certain of his internal functions are impaired, and that he will always need to help his body do its job by giving himself insulin to balance things out. There is no question that he will need this, and certainly we have never heard a critical voice about his taking this medication.
Why, then, do you think that our society is so critical around giving our children medication to balance out the functions, or dysfunctions, of their minds that are making their lives chaos? There is a very real stigma attached to parents making the choice to “medicate” their “busy” children. Oftentimes we don’t stop to think how it would be to be the child wanting to sit still in class and really be able to focus on those problems on the page, but to feel, instead, as though our heads were full of bumble bees, or that the sounds in the room seemed many times more loud to us than to our neighbor.
So many times what seems like a simple temper tantrum to an adult, is really a child expressing their sheer frustration at feeling as though they have no control over the world around them, or their movement in it, because they are unable to focus or read or speak as well as others their age.
Most of the time, when loving parents choose to assist their children with disabilities by the use of the appropriate medications, it makes the difference for that little one between a discouraging life filled with battles and struggles, and a simpler, more peaceful, fulfilling journey in step with their peers.
We brought home a new puppy this week for our family to enjoy. She’s a lovely little taffy colored imp with dancing eyes and a fresh spring in her step. At times, though, she will seem to turn a sharp corner into a completely unexpected behaviour, and we realize that in her mere fifteen weeks of life, before us, she could have experienced many different kinds of treatment, each of which could elicite the most unpredictable of responses.
Many times the children we are raising who are living with FASD have come into our lives as toddlers or older children. The experiences they have had, prior to our knowing them, often inform their puzzling behaviours. If we don’t bear this in mind as we step through life with them, it’s possible for us, as their caregivers, to assume responsiblity for their quirks, asking ourselves what we must do differently to bring about a more settled and understandable response from them.
Many times these mysteries remain just that. We’ve raised several children to adulthood who’s beginnings were unknown to us, and learned to just take the noticably peculier responses to note, but not to our own credit. In other words, anything can trigger the oddest responses in our FASD children, and we may never know what reference point that response sprang from. A child may act out more noticably when you are working in the garden……perhaps they’d had a negative experience that something in the garden would bring to mind. Another child may react to being touched a certain way. An innocent hand on their shoulder might transport them right back into the beginning of another’s abusing them.
At the same time as we should take note in our journalling of anything we notice out of the ordinary for that particular child, we are wise to remind ourselves that it could very easily not be about our relationship with them, but a residue of their life before knowing us. Once we can see a pattern of what is happening in their day to bring the noted response from them, we can usually make a change that will alleviate their trauma.
We have never found success in trying to talk this puzzle out with the child. They seem not to be aware of assigning the response to the trigger, and just bringing it up to them often will seem disturbing to their comfort.
So much of life with those living with FASD is a wild card!
It has been estimated that the majority of those incarcerated for theft in Canada are suffering from some degree of alcohol abuse while in the womb. As well, estimates by those working in Childrens’ Services would say that at least 80% of children in care are likewise affected. As the caregivers of those children, we daily see a foreshadowing of one of the biggest challenges they will be likely to face as adults. If there is a lack of recognition, in these children, around proprietorship, then how will we teach them not to just reach out and take whatever they see that appeals to them? Living with this issue in our homes, with children, is one thing, but releasing them into the world’s way of just society as adults is a whole separate vulnerability.
We often see this lack of balance at times of gift giving. It is not uncommon to have one of our affected children take the time to steal, wrap, label and present a gift to another of the children, which already belonged to the recipient. Or something belonging to one of the other children living in our home, who hadn’t been aware of it being taken.
When we have guests, we always ask them to lock their bedroom doors each time they leave them, so that their cell phone won’t be given away to another one of the children.
The good-naturedness of the thief when asked where an item is, would seem to indicate their lack of guilt or remorse over having taken it. Most times, they will simply take you to where the item is, and hand it cheerfully back to you. Consequences, in our experience, seldom will stop this behaviour from recurring. Our home is equipped with hooks and eyes high up on almost every door, so that small people cannot go shopping in personal rooms.
At the same time as taking the possessions of others seems OK to those suffering with FASD, the notion of giving anything of their own away is embraced with casual aggreement. The ownership, and value, of any item seems unimportant to our affected children.
How valuable, then, are the times in correctional facilities for those who’s minds aren’t likely to understand that correction?
Not long ago, I was dusting a cabinet in our great room on which sits one of Brian’s collection of antique lamps. As I brought my feather duster past the base of the lamp, the cord disconnected from the lamp and, being still plugged into the outlet, began to dance around the floor, sparking and snapping, like something out of a cartoon. I scrambled behind the sofa to find the outlet, and, as I did, it almost bit me in its frenzy.
As I went through my day, I thought about our minds and the lovely, fragile, intricate creation that they are. All of the different forces that stimulate and/or calm us, through the course of our everyday that we aren’t even aware of, but because our minds are whole and well, we take for granted. We seldom stop to analyze the breathtaking beauty of how exquisitely we are made.
With our children…..those living with FASD…..we constantly see the differences when those circuits are interrupted….like my lamp’s dancing wire…..still receiving random input and stimulus, but being poorly connected, and not functioning as it should…..power not getting to where it’s meant to go, but still snapping and sparking and creating chaos in their little minds….often even zapping those nearby. Without knowing themselves why they are suffering, they are unable to express their agonies with trying to cope with regular life.
Very seldom will we hear a child say “I can’t accomplish this task you are asking of me.” More often, however, we will see them destroying the very toy they love, or swinging the cat by the tail, or riding their bike lazily in circles in the middle of a 4-way stop intersection at which four vehicles are waiting patiently to proceed. Because their ability for logic is damaged, their ability to logically express their discomfort is often lost.
Very seldom is a behaviour just a behaviour….most often it is their language to ask for understanding and help in their present set of challenges.
The point at which we understood Sensory Processing Disorder to be one of the conditions many of our children were living with, was truly one of those “aaahhhhaaa” moments So many strange and unexplained behaviours were suddenly making “sense”!
At times we’d be so frustrated trying to make the world work for each of our little ones, hoping to see consistent responses from them to our strenuous efforts at giving them a consistent world. On Monday, eggs would be OK, but on Wednesday, they’d go “frizbeeing” through the kitchen at the speed of light when served to the same child. One fussy eater after another would almost bring us to tears as we would worry over the amount they were, or rather weren’t, eating.
SPD applies to many other areas of daily life as well. Some of our little ones will be so fascinated with the texture of lotions and shampoos that they will smear them all over any smooth surfaces they can find, especially windows and painted walls…….if we don’t put toothpaste up after bedtime, sometimes there will be nothing left in the tube the following morning, and someone has their hair absolutely glued to their head when they arrive for breakfast.
Another interesting SPD related behaviour we see is the fascination with paper. This envelopes the passion for coloring or creating or cutting a fresh white blank piece of writing paper…. to the incessant need to tear any softer paper products, like toilet tissue, or paper towel, or dinner napkins, into dime sized chunks until there are no larger pieces left. In night-time bathroom trips, often a child will abscond with the only tissue in that bathoom, and by morning, their bedroom carpet looks as though there’s been a snowstorm. Understanding these quirky activities is one thing….getting the kids to clean up after their antics is quite another chapter!