Thursday, October 27, 2011

FASD and the Law

There’s good news from government about FASD. Unfortunately, the news isn’t Canadian.  Not yet, anyway.

Readers of my blog may have read my entry earlier this month about the Canadian government’s proposed get-tough-on-crime Bill C-10  and its potential negative affect on the Youth Justice system. If the bill passes, it could mean more and longer jail time for young offenders, a potentially disturbing consequence for some young individuals with Fetal Alcohol Spectrum Disorder (FASD) who may get caught in the new system’s dragnet. What these young people need is improved services and supports, not jail time (if you too are concerned, please contact your MP and MPP).

In light of this potentially bad news for Canada, good news is coming in from Illinois:

  • the first state in the country to require FASD instruction in sex education classes.

  • State Attorney Robert Berlin is heading an FASD Task Force aimed at creating a system to provide mental health screening for all youthful offenders for symptoms of FASD.

  • All county clerks are supposed to provide a pamphlet describing the cause and effects of fetal alcohol syndrome to couples seeking marriage licenses.

These developments were announced by Appellate Court Justice Joseph E. Birkett, the former DuPage County State’s Attorney, speaking at an educational event his office organized for attorneys, judges, teachers, social workers and legal professionals to ensure the legal system is better educated about FASD.

Commenting on the large number of people attending the conference, Birkett said, “It’s good to know that people are willing to learn so we can improve the treatment of those suffering with FASD when they come into contact with the legal system.”

As a whole, the announced changes in Illinois are admittedly minor, yet I see them as enlightened first steps. These legislated changes show a recognition of issues related to FASD and the law, and were introduced by the State Attorney, an elected official who represents the State in criminal prosecutions, and often the chief law enforcement officer of a jurisdiction.

What I find most encouraging about the Illinois situation, if it comes to pass, is the proposed system to provide mental health screening for all youthful offenders for symptoms of FASD.

Though there is strong anecdotal evidence about the high prevalence of young offenders with FASD within the justice population in Canada, the rate has not been fully established, according to the Fetal Alcohol Spectrum Disorder and Justice website (developed by The FASD ONE Justice Committee of FASD ONE (FASD Ontario Network of Expertise) with funding from the Public Health Agency of Canada and the Department of Justice Canada, Youth Justice Policy.)

While studies have been carried out on prison populations, “forensic inpatients,” and youth on probation for criminal activities to determine the rate of FASD among these groups, two major studies suggest that individuals with FASD are not being identified in the justice system in Canada (Burd, L. 2003, DOJ, 2005).

In another study, however, researchers screened offenders undergoing preliminary assessment at Stony Mountain Institution near Winnipeg concluded that the incidence of FASD was ten times greater in the study sample compared to the general population (MacPherson, P. 2007).

The prevalence of victims of violent crime with FASD is not clear either. In 2009, researchers interviewed victim service workers across Canada who work with victims with FASD.  Anecdotal information suggested that FASD is under-diagnosed among victims of crime (Fraser, C. 2009).

Undoubtedly, identifying individuals with FASD who find themselves in the criminal justice system, as proposed in Illinois, would be a major step toward improving the investigation, pretrial, trial and sentencing of such offenders. As well, a clear idea of the prevalence of the problem would hopefully increase  recognition of the problem and encourage interventions to address them.

But as anyone familiar with FASD knows, this is no easy thing to do. FASD is a spectrum disorder. It’s not always easy to diagnose. The number and severity of symptoms vary from person to person and are sometimes masked by other disorders. Any assessments undertaken through the legal and criminal system need to be undertaken by qualified, experienced medical professionals trained in identifying FASD. Without such people in place, I would think assessments for FASD would be meaningless. I’m assuming they know that in Illinois.

Excellent work regarding FASD and the justice system has been undertaken in Canada. .
I’ll cite two here.

For detailed information about court cases, trials, bail, sentencing, etc. related to FASD and the Justice System, please see Information available in both English and French.

For a detailed bibliography and links to American and Canadian FASD-related legal cases, research, and papers about FASD and the Criminal Justice System, go to B.C.’s Asante Centre’s website

Monday, October 24, 2011

Apple Fritters (and my son)

My son with Fetal Alcohol Spectrum Disorder, now 24, lives in a group home during the week and is home with us on the weekends. We love seeing him and he loves being here, though he spends most of the time quietly in his room, often carving wood.

He’s a very sweet, quiet young man, but completely without the gift of conversation. Though we don’t get much back in words, my husband and I always chat with him about things going on, ask him questions, and like to hang out with him if he’s willing.

While I know he’s a loner and not usually comfortable with people, I see him light up when he actually does make some sort of “connection” with people. I, therefore, as his mum, try to bring him out of his isolation. I think part of the reason he likes coming home is because we make him “connect,” and he therefore feels connected. Who, in this great big world of ours doesn’t need that?

Nevertheless, the strength of our connection is not based on words. When he was little, we could lavish physical affection on him, and it helped us build a strong bond – us with him and him with us. Unfortunately, the physical affection route to building our relationship with him is long gone. It’s hard to get even a hug out of him these days. I guess it’s age appropriate, and that’s a good thing. But I miss the physical connection with my son. It was reciprocal.

I know that all the attempts in the world at conversation isn’t going to maintain our connection. Fortunately, like other mothers, I know that another good way to my son’s heart is through his stomach.

Since it’s fall, I decided to take advantage of all those beautiful, juicy fresh Empire and Cortland apples I bought at the St. Lawrence Market on Saturday morning. I whipped out the recipe for Apple Fritters I had been drooling over in my latest edition of Canadian Living magazine, and got cracking. I convinced myself, without much difficulty, that deep fried and battered apple slices would be good for the family.

I was right. They were heavenly. As my husband said, “Tastes like we’re at the State Fair.” When he said, “They’re great,” I could only reply, “Of course they’re great. They’re sweet and fried. Always a winning combination.”

My son was grinning from ear to ear with each bite of the fritters. Seeing him like that was almost worth the extra inches on my waist. Forget the almost. It was worth it. As I walked him to the front door on his way back to the group home, he looked at me and said, “The fritters were great, mum. You’ve got to make them again.” Boy, will I.

Besides my joy, let me share with you the winning Apple Fritters recipe from Canadian Living: 

Apple Fritters

1 ½ cups all purpose flour
2 tbsp granulated sugar
1 tsp baking powder
½ tsp cinnamon
1/ tsp salt
1 cup soda water
2 tbsp unsalted butter, melted
2 eggs, separated
3 apples
Oil for deep-frying
Icing sugar

In large bowl, whisk together l ¼ cups of the flour, granulated sugar, baking powder, cinnamon and salt; whisk in soda water. Whisk in butter and egg yolks; cover and let stand for 2 hours.

In separate bowl, beat egg whites until stiff not not dry. Fold into batter. Place bowl in larger bowl of ice water; let stand until cold, about 15 minutes.

Peel and core apples. Cut into ½ half inch cubes. Toss with remaining flour. Fold into batter.

Meanwhile, in deep fryer, work or wide saucepan, heat about 2 inches oil unter deep-fry thermomenter reads 350 degrees F. Using ¼ cup measure, pur in batter, 4 at a time.

Fry, turning once, until golden, 3 – 4 minutes. With slotted spoon, transfer to paper towels to drain. Sprinkle with icing sugar and serve warm.



Canada’s crime rate continues to fall. So why Bill C-10?

Continuing the downward trend of the past decade, the crime rate in Canada dropped by 3 per cent in 2009 and was 17 per cent lower than in 1999, according to Statistics Canada in July, 2010.

Nevertheless, on September 20, Prime Minister Stephen Harper’s Conservative government tabled C-10, the government’s new let’s-get-tough-on-crime and beef-up-the prison-system bill.

Formally known as The Safe Streets and Communities Act, the bill actually comprises nine small bills that were introduced by the Conservative government during its minority rule, but were never passed.

For good reason.

Smack dab in the middle of the omnibus crime bill are major changes for the youth justice system that would put more young offenders in jail for longer periods in time.

This is of concern to many parents of children with Fetal Alcohol Spectrum Disorder, like myself. Some of these young people find themselves in and out of the criminal justice system because they lack good judgement; are vulnerable and easily manipulated by people with criminal intent; and have difficulties understanding consequences related to cause and effect. These young people need better supportive services, not jail.

Want to create a hardened criminal? Put a youth offender in jail for a really long time.

The Canadian Coalition for the Rights of Children know this. They believe Youth Justice was not properly studied or debated in the last election, and they question if putting more people in jail would really deter them from criminal activity and increase public safety.

They also ask the following questions: Does broadcasting young people’s names help them become responsible adults, and what actions actually do reduce violence against young people and by young people?

The Coalition believes that if the government really wants to prevent violent crime committed by youth, they should provide more funding for professionals in the schools and health system who can recognize problem youth, and give those youth help before they become a problem. “You'll spend a lot less money long-term, and help create a more civil and bearable society.

“It has been proven in the U.S. over and over that the proposed tactics don't work. So why are they even on the table?” The Coalition is concerned that the government knows nothing about youth offenders, or drug addicts, and “is proud of the fact that they don't consult anybody who DOES know about them, and puts solutions like this on the table in the absence of any reliable input.”

Concerned parents and the Coalition aren’t the only people who think the government’s get-tough-on-criminals plan is, well, just plain criminal.

According to The Globe and Mail, Canada’s youth crime plans bewilder international observers in “countries whose systems, for the most part, closely resemble Canada’s – can’t figure out why this country is planning to shift toward a jail-intensive approach. Everyone else seems to be doing the opposite, not for ideological reasons, but because evidence shows it works. ”

Even Texans believe the “send them to prison” approach to crime is dumb. And that's something.

CBC political reporter Terry Milewski quotes Conservatives in the United States' toughest crime-fighting jurisdiction — Texas — who say the Harper government's crime strategy won't work.

"You will spend billions and billions and billions on locking people up," says Judge John Creuzot of the Dallas County Court. "And there will come a point in time where the public says, 'Enough!' And you'll wind up letting them out."

Adds Representative Jerry Madden, a conservative Republican who heads the Texas House Committee on Corrections, "It's a very expensive thing to build new prisons and, if you build 'em, I guarantee you they will come. They'll be filled, OK? Because people will send them there.

And if people from Texas­ believe that, you can only imagine how the  rest of the informed world thinks.

For further information about the Bill and its effects on young people, please see the Coalition's website

Better yet, contact your MP and tell them issues need to be studied and reassessed before passage of the bill. Make yourself heard.

Wednesday, October 19, 2011

Local school boards dealng with special needs children

My husband and I have worked with many wonderful people who have eased our way while raising our son with Fetal Alcohol Spectrum Disorder (FASD)  – teachers, doctors, fellow parents, social workers, friends and family.

But as parents of special needs  children know, you also have to deal with people who make life more difficult than it already is. In particular, many parents run into problems dealing with their local school boards while trying to get their child a proper education.

Our son had trouble the minute he entered Grade 1 in the public school system in Toronto. Within a few months, we were told that we had to attend a meeting called an IPRC where a committee would determine whether Michael would be placed in a Learning Disability class or a class called Behavioural. 

The unpleasant experience we had at this meeting taught me one important lesson. My husband and I would have a long future advocating to make sure our son's needs were met. Clearly, no one else was going to do it. 

The episode was a real eye-opener.

I'd like to share with you (below), an excerpt from my recently finished memoir where I describe our experience at the IPRC meeting. My hope is that it can provide other parents the strength and courage they need to speak their mind when dealing with similar situations.

                                                 * * *
Robin, Michael’s previous Montessori teacher and I walked into the dimly lit corridor of a1950s-built elementary school and up the stairwell to the second floor. As we entered the conference room, a thin woman in a dark-grey tailored suit motioned for us to take a seat on what turned out to be remarkably uncomfortable chairs.
We sat facing a long table occupied by six people looking like bone-tired members of a jury who had just delivered a guilty verdict to their previous guest. The woman introduced herself as the chairwoman. No one else gave their name, smiled or said hello. Robin and I looked at each other and telegraphed ‘what did we just walk into?’

“We’ve had a look at Michael’s files and have made our decision,” the chairwoman said to us. I was dumbfounded. We had spent hours preparing presentations about Michael for the committee. What was going on?

I felt compelled to say something before the chair went any further. There was no time to confer with Robin or Kathleen.  “Excuse me,” I said,  “but we’ve each prepared a presentation for the panel. We were told we would have the opportunity to speak before you made your decision.”

The chair looked at the other panel members, several of whom gave her minimalist nods. 

“Alright then,” she said, not sounding overly pleased.

Kathleen spoke about various accommodations made at the Montessori school for Michael, how easy they were to make, how little time they consumed. Yes, Michael was in some ways different than the other children, but that didn’t pose any problem. “He was so creative and fun, he inadvertently became a leader,” she added. “We just had to be careful what he was leading the other kids into,” she concluded, with a good-natured chuckle, “but all in all, he was a real asset.”

Kathleen spoke so assuredly, it buoyed my spirits. Robin and I then spoke about Michael’s strengths, our concerns that he may have an undiagnosed learning disability, and our desire to get proper help for him.
There was silence when we finished. No one on the panel blinked, spoke or asked a question. Their response bordered on weird. Eventually, a voice. “Thank you, Linda and Robin. Thank you Kathleen,” said the chairwoman, barely moving a muscle on her severe face. I found it eerily reminiscent of an imperious Queen Elizabeth delivering her yearly televised Christmas message to the world.
 “As I mentioned before you spoke, we have made our decision about Michael’s placement. An opening has come up in a Behavioural class in this district. Our funding formula dictates that the classroom has to be filled, so Michael will be labeled Behavioural.”
She was clear. The sheer inappropriateness of their placement, our willingness to take Michael to a school in another district or to wait for an opening in a learning disability class had no bearing on their decision.
I clenched my hands. “Is there anything further I can say or do to convince you that Michael belongs in LD?” I asked. 
“To get him labeled LD, you would have to attend an IPRC next year and make a case to get the label changed on his official record.”
What happened to this year? “Even if a learning disabilities class comes up next week, we can’t put Michael in it?” 
“Correct. He wouldn’t be eligible.”
“Can we appeal your decision?” I asked, trying to hide my fury.
“Yes, there is an appeal procedure,” the chair said, noticeably stiffening into her chair and pulling down her pencil skirt. “I can explain the process after our meeting.” Her mild display of displeasure – the first crack in her well-fitted armour – fueled my resolve.
“I understand you’ve made your final decision,” I continued, attempting to sound conciliatory. “However, we’re not really clear that you have taken all the relevant factors in Michael’s case into your decision-making. We’re likely to appeal. So may I suggest something?” I paused.
“I’d like you to consider a dual designation for Michael. Instead of labeling him ‘behavioural,’ label him ‘behavioural/learning disabilities.’” They could put Michael into the behavioural class for now, but we’d have the opportunity to get him into LD if space came up. “It would spare us all the cost of an appeal or another time-consuming IPRC.”
Until that moment, committee members had appeared so utterly bored, I wondered if the proceedings had overlapped with morning nap time. But they were now rotating their heads, scanning from left to right, like owls waking in the night. The lay of the land had changed. They were sniffing for scent of the chair’s next moves.
“Yes, alright,” she said. “The committee can do that. We have dual designations.”
I wanted to scream, ‘Oh, you can do that, can you? You uncaring cows. Why didn’t one of you let me know I had the right to appeal? Why didn’t one of you suggest a dual designation? It was pure fluke I came up with the term. I had no idea if such a thing even existed. What will happen to the next poor fool who sits in front of you?’ 

Instead, I said, “Thank you. So Michael will be designated LD/Behavioral.” It was a victory, of sorts. We should just get the hell out. 
Robin, Kathleen and I rushed out of the school. It wasn’t long before we came to the same realizations. Michael’s needs were never on the committee’s agenda. It wouldn’t be the last time this happened. If Michael was to get what he needed in his life, it would be up to Robin and I to get it for him. This was likely just the beginning.

“It’s ironic,” I said, as we walked to the street. “In the 1960s, I was fighting for other peoples’ sons – the demonstrations, pickets, sit-ins, the marches. We were all desperately trying to stop the War in Vietnam and bring our troops home to safety. Well, look how times change. I don’t have to fight for other people’s sons any more,” I continued, “ I have to fight for my own.”

My husband Robin and I looked at each other knowingly. We both knew. This was the first of many battles that lay ahead of us.

Tuesday, October 4, 2011

ADHD in Adults: A Hidden Malady?

I was sitting having my morning cup of (way too strong) coffee, reading The Globe and Mail, Canada’s national newspaper, when I glanced at an article on ADHD. I scanned the first paragraph, and thought I’d scream. I can’t begin to count the number of times I have heard people, including my mother, give, what the article refers to, as The Case Against Adult ADHD:

“ Attention deficit hyperactivity disorder is a dubious condition promoted by Big Pharma to push stimulant drugs; the small number of children with true ADHD (rather than lax parenting) will outgrow it by their teens, so adults have no business using the diagnosis  as an excuse for failing to meet their commitments as employees, spouses and parents.”

Not so fast.

ADHD is a neurobiological disorder that interferes with executive functioning – an umbrella term for thinking processes that include planning, attention, working memory and impulse control.

According to researcher Dr. Russell Barkley, as quoted in  The Globe, the disorder persists in adulthood for as many as two-thirds of children with ADHD, and 4 to 5 per cent of all adults have ADHD. It’s one of the most impairing disorders Barkley sees in his psychiatric outpatient clinic in North Carolina

One-third of people with ADHD never finish high school, he says. As adults, they tend to have a checkered work history, money problems, broken relationships and inconsistent parenting skills. They are at high risk for depression, anxiety, substance abuse, eating disorders, dangerous driving and impulsive behaviour.

I have been hearing part, if not all of the Case Against Adult ADHD along with the Case Against ADHD In General since we decided to give our son meds for the ADHD diagnosed at the same time as his Fetal Alcohol Syndrome (FAS, now part of the Fetal Alcohol Spectrum Disorder, FASD).  He was six. After the ADHD diagnosis at The Hospital for Sick Children here in Toronto, Michael was put through a rigorous three-week, triple-blind study to see whether his behaviour and ability to learn might improve on Ritalin, and if so, on what dose.

Triple-blind means no one knew what Michael was being given each week: not us, his parents; not his teacher, not Michael himself, nor the doctor at Sick Kids. The only person who knew whether he was receiving a placebo or drug was the pharmacist.  At the end of each of the three weeks, my husband and I as well as Michael's teacher had to fill out forms describing Michael’s behaviour, mood, attention, ability to learn, etc. Michael's opinions were delivered directly to the doctor.

The results were blindingly clear to all of us, including Michael. The first day of the week he was on the dose of Ritalin thought to be the right one for him, he came home from school and said to me. “Mum, there’s a tunnel now between me and my teacher.”  I wasn’t quite sure what he meant until I realized it was his way of saying that he and the teacher were now connected. He also said “The pills make my ears pop.” That too dumbfounded me. Then I realized. He could now hear what people were saying.

Not everyone was happy with our decision to give Michael meds, though. My mother began sending me clippings from her local newspaper in Florida, relaying the following messages: ADHD enormously over-diagnosed. The invention of Big Pharma.  Boys being boys labeled with ADHD when  just full of energy. Lax parents can't keep kids under control so ask doctors to prescribe drugs. Doctors prescribe to keep parents happy. Cut sugar out and everything will go away.

The numbers of children diagnosed with ADHD is high.  It probably is overdiagnosed, particularly by family doctors who aren’t specialists in what may be a more complex, undetected neurobiological disorder.  ADHD may only be a symptom of something else. But not in our case, the pills Michael was prescribed for the ADHD aspect of his FAS have been a godsend. With them, Michael  could stand still long enough to sing ‘O Canada’ at the beginning of school with the rest of the kids. But most importantly, he learned to read and write, both things he had been struggling with without success until the meds came into his life.

Michael didn’t grow out of his ADHD when he became an adult. I can’t imagine he ever will, nor are doctors telling me he will. Years ago, before ADHD was well-studied, the theory was that kids would outgrow it when they got into their teen-age years. It was a temporary blip that would just disappear, people thought. Maybe some people do outgrow it, but it’s not what I hear from people who have it.

Unfortunately, ADHD can plague people all their lives. I know several adults who were diagnosed with ADHD late-in-life. All believe the diagnosis explains why they’ve suffered all their lives with issues related to time management, organization, anger, money, low productivity and lack of success in school, work and relationships. Each of them wish they had been diagnosed earlier. Perhaps they could have done something to change their patterns, even turn their lives around. They'll never know.

I expect my son will be on the ADHD meds (Concerta is the long-lasting from of Ritalin he's now on) his whole life. It’s not something I relish. But I feel lucky we live in a world where the ill effects of ADHD are beginning to be understood, and glad that Big Pharma, not generally my friend, has found something to help my son.

The following books may be of interest to readers who’d like to learn more about adult ADHD and the devastating effects it can have on people’s lives. All three books are highly recommended and offer constructive, positive advice.

Driven To Distraction: Recognizing and Coping with Attention Deficit Disorder from Childhood Through Adulthood by Edward  Hallowel, MD

Delivered from Distraction: Getting the Most out of Life with Attention Deficit Disorder by psychiatrists Edward (Ned) Hallowell and John Ratey  This is a follow-up to  Driven to Distraction. Both books deal with the challenges of ADD/ADHD and offer advice on treatment and how to live successfully with the disorder.

And some couples might find this useful: The ADHD Effect on Marriage: Understand and Rebuild Your Relationship in Six Steps: Melissa C. Orlov. Ms. Orlov also has a website that's worth checking out.