Challenges of Raising an FASD Child in Canada




© Springer International Publishing Switzerland 2016
Monty Nelson and Marguerite Trussler (eds.)Fetal Alcohol Spectrum Disorders in Adults: Ethical and Legal PerspectivesInternational Library of Ethics, Law, and the New Medicine6310.1007/978-3-319-20866-4_17


The Challenges of Raising an FASD Child in Canada



Monty Nelson  and Marguerite Trussler 


(1)
Consulting Psychology Associates, Edmonton, Alberta, Canada

(2)
Office of the Ethics Commissioner, Edmonton, Alberta, Canada

 



 

Monty Nelson (Corresponding author)



 

Marguerite Trussler



Abstract

Parenting a fetal alcohol damaged adult is even more challenging than parenting the child. With little support services and no “road map”, the task is time-consuming and nerve-wracking in ways that those who have not experienced it find difficult to understand. Jail looms like an inevitability, and who will take over when the aging parent can no longer provide a home and organizational support? This chapter was written by and provides an intimate perspective on one Canadian mother’s struggles. The author has asked to remain anonymous.


Looking for immunity in the stars complex opportunities.

Jean-Paul Martino (1935–1996).


A couple of weeks ago at about 10 p.m. there was a knock at the door that changed everything. It was the second knock that night, when I had been expecting a quiet evening.

The first knock was my son—my 20 year old “adult” who has the executive function of a 5 year old and still sucks his thumb. I had already gone to bed, exhausted from an exceptionally busy day. It was Friday and he had rushed out to meet a friend when I was about to start making dinner. He often does that. One phone call or text message and he is off, even if dinner’s already on the table. No matter how many times I plead with him to eat before leaving, and to at least call once a day when he’s gone, I may not catch hide nor hair of him for a week or more. Then he will show up hungry, wanting a shower and stoked about his latest misadventure.

This was a Friday night, the 4th of July. My boy had not been home on a Friday night since January, so I was relieved when he came in at a decent hour and said he wanted to rest and watch a movie. He even agreed to help clean the house on Saturday. I hoped we might finally be turning some kind of corner, until that second knock shattered my delusions.

The corner we turned was not the one I was hoping for. It was the police. They took him to jail. According to crumpled papers I had not noticed lying right there on a table by the front door, he had been charged with mischief a week earlier. He was supposed to go for finger-printing on July 2nd and to court at 9 a.m. on July 4th. He said nothing about this to me. When I asked him about it later, he said he was afraid I would be angry. But that was not the only reason. He never brought me papers I needed to see, not even for my consent to school outings he was looking forward to. All the time he was growing up, I had to search his back-pack and ask his class mates to find out what was going on. He does not understand the link between papers and what might or might not happen.

Child-rearing specialists advocate tough love, but those who know more about FASD say it is better to hang on. Yes, the brain damage is permanent, but no, like everyone else, these kids can learn. They need some connection to properly functioning peers and adults yet the friends they find are often suffering from similar disabilities.

When I look back, I can see that the pattern of misadventures and disappearances that led to his arrest and that makes my life so uncertain developed gradually. He never could be counted on to come home reliably. He could not be sent on an errand or allowed to go to the park to be back in half an hour as promised. Nothing like that worked, ever. As the parent of another FASD child said, the closer to home the worse the sense of time. Nor could he explain where he was going or why. He could disappear out the door in the blink of an eye. I could not even plan dinner-time after they stopped driving him to and from special schools by bus.

One day when he was about 14 my twilight search for him hit a dead end. I had traced him to another neighbourhood and the kids who saw him last said he was running away with a class-mate. It was getting dark when I phoned the police. I lay in bed, reviewing horror stories about missing children. About 2 a.m. I finally got a call. Normal children do not understand my child’s disability any more than adults do, and his lack of executive function gives them the courage to do what they might not otherwise try. This time, the other boy was afraid of being punished for missing his curfew. They had bus passes and 87 cents between them. So, following a garbled sense of geography, they decided to go to Winnipeg…to ride the roller-coaster at the West Edmonton Mall (a completely different city 1300 km away). Fortunately the classmate looked like a 10 year old and an alert bus driver in a distant suburb called the police. So that first bout of anguish lasted only a few painfully long hours. But that knot in my stomach that prevents sound sleep was to return time and time again as his absences stretched from hours to weeks.

In spite of all the misadventures that have happened since then, my child still does not understand why I cannot go on as usual when he does not call home. And I am so entrenched in my hope for normalcy that I forever fail to predict his next move. My words flow past him like water through a sieve. “Blah, blah, blah.” One of the hardest things for me to come to terms with is that my looping connections full of causes and consequences do not make any sense at all to my child who is so good at living in the moment. If he has a phone, he might call me to say “I’m almost home”. He is at Broadway and Alma, ten minutes away. “Don’t start dinner”, said my counsellor who has observed FASD for many years. And I laughed because the next call was 3 h later from the other side of town. Of course the phone had not worked when I tried to call him. “What happened?” I ask when he finally comes home. “I saw a friend”, he says, or something like that.

I have given up on asking names, addresses. He wants to be independent, so he resents my questions. He does not understand that just because he knows something does not mean that I know it too. So if he is okay, shouldn’t that be obvious? Nor does he understand other people’s priorities -whether for evil or for good. What did that job counsellor think when she came for him in the waiting room? He had just picked up the paper and he turned away from her to continue reading his horoscope. According to his diagnosis, his mental processing is extremely slow. Accurate enough when he has time to think things through, but transitions are difficult and he finds it hard to shift gears or prioritize. He really did want her to help him find a job. He wanted the help from all the other agencies whose appointments he has missed as well.

Now that he is 20, I am finally starting to get used to some parts of his idiosyncratic dynamic. Fetal alcohol damage varies from one person to the next, depending on what was developing at the time of exposure. Though he is not articulate, my child is cheerful, personable, physically fit and good looking. How many times have people told me, “He’s 19, he’ll grow out of it”? I suppose the quest for independence is hard on all parents, but most can at least hope their kids will eventually learn to fly. My parents could give me a sum of money to last for a term at university. Even if I was only getting B’s instead of A’s, I could get and keep a job or a place to live and they could find me if they needed to.

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Feb 18, 2017 | Posted by in PSYCHOLOGY | Comments Off on Challenges of Raising an FASD Child in Canada
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