My Son’s Success With His Devoted Tutor

Every Saturday afternoon, around 3:45, my son drops a bit of change into his pocket, hops on his bike and rides over to our neighbour Sally’s house, only a few blocks away. Sally is the local “bootlegger” on Toronto Island where we live, a 10-minute ferry ride from downtown Toronto.

There are no stores here, so Sally provides an important service to the children living on our island. Part of Michael’s weekly ritual is buying a candy bar and a can of coke from her before hopping back on his bike, now properly stocked, to ride a few more blocks to see another neighbour, Ann.

Ann is the real reason Michael runs out the door each Saturday. She is Michael’s tutor. Michael and Ann, a retired special education teacher, meet at her house every Saturday at 4:00.

Michael can’t wait to see Ann, and in the three years she’s been tutoring him, Michael has not only improved his reading, writing and math. More importantly, he and Ann have become friends. Real friends. Last week, Michael brought his private, treasured rock collection over to Ann’s house to show her. As Michael must have known, Ann went through each piece one by one with him, ooing and aahing over each one, from the pink quartz to Fool’s Gold. Michael doesn’t share his rock collection with just anyone.

Michael, who has Fetal Alcohol Spectrum Disorder, dropped out of school when he was 16, almost completing Grade 9. We tried doing everything we could at the time to keep him in school, but we weren’t successful. Michael just shut down completely and refused to go to school one day, and that was that.

I can’t put blame any one thing to explain why Michael dropped out. He was in a special high school for children with special needs; most teachers were nice to him, and he was friendly with several kids in his classes, unusual for Michael who is normally shy and uncomfortable socially.

But something went wrong when Michael left Grade 8. Classes got bigger. Homework increased. No “homeroom” teacher to pay special attention to him. Greater independence was expected. Put all that together, and you get a kid, my Michael, who just felt lost, confused, isolated and unable to function in what to him, became “the big world.”

Of course I look back to that time now and think of all the other possible things we could have tried to keep him in school, but hindsight, and remorse, I suppose, are useless. And Michael may have experienced some bullying or other physically or emotionally damaging experience he never told us about, and therefore couldn’t address.  But, he dropped out with the words I will never forget, “I’m never going back to school, ma.” I knew he meant it.

For years after he dropped out we tried to get him back in school, or at least to take remedial courses. He refused. He wanted nothing to do with learning. It was particularly unfortunate, because Michael’s skills in reading, writing and maths were never good, and we naturally were worried that the knowledge and skills he did have would be lost over the years. To my great disappointment, he wasn’t a reader, so even buying him books about nature or animals or plants, things he’s interested in, didn’t work either.

The years moved on, and nothing changed. Then one day several years ago, I had a brainstorm. I was speaking to Ann, one of my neighbors, and asked how she’s spending her time since retiring from teaching. I had always liked her, and was always quite moved hearing her talk with such dedication about her students, many of whom had both learning disabilities.

After telling me about this and that, I blurted out, “Ann, would you be interested in tutoring Michael? He’s been talking recently about wanting to get his GED (high school equivalency), but I have absolutely no idea what grade level he’s at in any subject. We’d have to play it all by ear. My hunch is that he’s a long way off.”

Ann had known Michael since he was young and was willing to give the idea some thought. Eventually she came back to me, saying, “Let’s try it.”

Ann found teaching Michael to be a challenge. Besides being at a fairly low level in most subjects, Michael’s mind doesn’t work like most people. Poor executive functioning, poor memory. One week he’ll know something and the next week have absolutely no knowledge of the same bit of information. Sometimes his reading is good, sometimes the words barely come. Sometimes he can remember his multiplication tables, other times not.

We never got much feedback about the sessions with Ann, but we assumed lessons were going well because Michael never does anything he doesn’t want to (like most necessary activities of daily living). “How did it go, Michael?” was always met with a simple, “Good.” But he went each week without a murmur, a clear marker that something was going right.

As Michael has little sense of time and doesn't wear a watch, it was always necessary for my husband and I to keep close track of Michael on Saturdays so that he wouldn’t forget to go to Ann’s for tutoring. Sometimes we would get so caught up in our own lives or be out of the house, and Michael would wind up missing his meeting with Ann because we weren’t there to send him off.

One day, about six months after Michael began going for tutoring, we started noticing that the first thing Michael would ask when we woke him on Saturday mornings was “Is this the day I go to Ann’s?”  We’d say yes, and expect to start reminding him to get ready around 3:00. But we didn’t have to. Before we would say a word, Michael got himself ready to go and was out the door by 3:45, whizzing away on his bike, the change rattling in his pocket.

Over time, Ann began to share with me how special their sessions had become. She would light up when talking about Michael, thereby making me light up listening to her. Listening to Ann was a mother’s dream.

She talked about getting Michael to do a bit of writing. Though his thoughts and words were simple, often in list form, Ann found them revealing and poetic. Sharing that with him made him want to do more. They began reading books aloud together, talking about passages as they read. While helping Michael with his comprehension, it was an opportunity to bring Michael out of himself and to share thoughts and feelings. Ann shared hers as well. She cut out newspaper articles she thought he’d be interested in, providing more material for conversation and thought.  She invented games to play with him, always ending their sessions with a bit of fun.

I have no idea what grade level Michael may be in his reading, writing or math. He doesn’t mention getting his GED anymore. He still doesn’t tell me much about his sessions (so I’m fortunate that Ann does).

All I know is this: Michael runs out the door each Saturday now, usually without a reminder, arriving at Ann’s house early. And everytime I see Ann, she has a wonderful story to tell me about her session with Michael. The icing on the cake is that while telling me the story, besides grinning from ear to ear, Ann oozes, what appears to me to be strong feelings of fondness for my son. They have even made plans to go together to see the film version of the book they’ve been reading the last six months.

I can only conclude that Ann’s enjoying the sessions as much as he is.

If this isn’t a success story, I don’t know what is.

The Difficulties Finding a Good Support Worker or Coach

I started writing this blog in a rage. When I finished my detailed four-page (word document format) rant, I read it through and realized that’s exactly what I had done. Rant. And rants don’t necessarily make good blogs.

While it felt good for me to give a blow-by-blow explanation of why my husband and I decided we have to fire our son’s support worker today, I realized that’s about all it did: help me get something disturbing and sad out of my system and down on paper.

But, as I said, that’s all it did. Though I think dozens of people raising children with special needs would relate to my unhappy situation (if they made it through my dense writing), it wasn’t going to work for a blog. Experience tells me that more often than not, most readers’ eyes begin to glaze over when reading (or listening to!) other people’s angry missives.

So, I’m rewriting this blog entry right now and will try to stick to the salient facts. Wish me good luck.

It has always been difficult to find good support workers (or coaches) for our son with Fetal Alcohol Syndrome. When he was diagnosed with FAS at the age of six, in 1993, few professionals had heard of FAS. Many who did know about it misunderstood the condition completely (“people with FAS have no conscience”; “they’re violent”; “they can’t learn,” etc.).

So when Michael was young, we couldn’t find a support worker who had a good understanding of children with FAS or how to work with them. While we did find caring, sensitive workers, they had no specific training working with people with FAS so they often relied on therapeutic models that didn’t work, such as “Just try harder, Michael.”  Or, “You know you weren’t suppose to do that. So why did you?” Or, “You knew that 2+2= 4 last week. Why do you not know it this week?”  That kind of thing.

People who understand FAS know that many people, including our son with this neurological disorder, have poor executive functioning, bad memories and don’t necessarily understand the consequences of their action. They need external brains.

Back to the support worker. Last year, we hired Bob to work with Michael, now 24. Michael still needs help following routines of daily living and needs to improve skills which will allow him to live what is called “semi-independent living.”  Michael lives in a group home during the week and is home with us on Friday through Sundays. Michael also needs someone he can talk to.  The staff at the group home, while nice, provide minimal support.

Bob came recommended because he had worked with people with FASD before, and when we interviewed him, we were impressed with his knowledge of the disorder.

Once hired, Bob spent several hours twice a week with Michael helping him with daily routines. He took him out grocery shopping, to the library. He helped him on the public transit system and did other things to  get him out into the world. And they talked.

We thought everything was working well with Bob and Michael was content with seeing him several times a week.  Until…

Michael broke a serious rule at his group home a month ago (I don’t feel it fair to Michael to write what it was, but suffice it to say, Michael didn’t harm or affect anyone else).

Needless to say the group home workers as well as my husband and I were deeply upset about what Michael did. We met and tried to come up with appropriate consequences and reinforcements to ensure Michael understood the “wrongness” of his act and wouldn’t repeat it again.

But it’s not easy to teach someone not to do something again, even when they understand it’s wrong, when they act more on impulse rather than reason.

This is where the problem with Bob comes in. Bob decided the best way to reach/teach Michael about this issue was to berate, bully, and verbally bludgeon Michael about his misdeed. He was relentless and wouldn’t give up. He believed he had to “break Michael’s defenses down,” in order for Michael to understand the seriousness of his misconduct. He repeatedly had Michael in tears.

We didn’t know about this until Michael eventually came to us, crying, and explained what was going on. “I don’t think anyone should treat me like that.”  “He asks me questions about what I did that I can’t answer.”  “When someone is that mean to me, I dig in my heels and it makes me want to do the opposite.”  “I don’t want to work with him anymore.”  “He makes me feel bad about myself.”

You would think that would be enough for my husband and I. You’d think we would call Bob and tell him we didn’t think this approach was constructive for Michael or a way to help him learn to control his impulses better.  But we didn’t trust our instincts. Bob was a professional. He came highly recommended. Perhaps he knew something we didn’t. Perhaps we were being unnecessarily protective and defensive of our son.

So, instead, we set up a meeting with Bob for all of us to meet and decide how and if to move forward.

I’ll spare you the details of the meeting, but Bob was belittling to my husband and me (you’re too easy on Michael; you’re pretending there isn’t a problem; you’re letting Michael get away with things).  He bullied Michael when Michael tried to talk (“Speak louder.”  “You can’t just tell me you’re not going to do that again. You have to tell me how you’re going to stop yourself from doing it…”

Bingo. Time to trust my instincts. Too bad I hadn’t earlier.

This guy is a bully. Michael’s not going to learn anything from this guy. He’s going to do the opposite of what Bob says. Plus, our goal is to build Michael up, give him confidence, help him reprogram his brain in a constructive way.

As Michael said, no one should treat Michael like this.

So we’re firing Bob. One problem solved. But there’s always another.

How are we going to find someone (good) to take his place. My husband and I can do only so much. Michael’s not the only one who needs support.

Whew! I did it. The blog is now only two dense pages. Congratulations to any of my blog readers who made it through from beginning to end.

I would love to hear about any of your own experiences  (good or bad) with workers, and what you do to ensure you’ve found the right one.

Or, you might want to share experiences about a time when you did or did not trust your own instincts.

Happy New Year to you all.

It’s That Time of Year (as always)

When my son with Fetal Alcohol Spectrum Disorder was growing up, people used to say to me, “I don’t know how you do it.”  I took the expression “do it” to mean raise my son, manage my family and generally, just lead a life and come through it relatively sane.

I had several responses when asked about “doing it.” My answer depended on how that day (month or year) was going. On a bad day, it was, “Quite honestly, I’m not really sure I am doing it.” Another day, feeling a bit more resilient, I’d say, “What exactly are my options?”

Around holiday time, like now, I usually revert back to the “Quite honestly…” response.

I subscribe to many blogs, websites and Facebook pages of parents (and other caregivers) talking about raising children with special needs. Their entries either break my heart, inspire me, teach me or make me ask, with remarkable respect, “How do they do it?” Especially this time of year with so many other demands on their time, energy and financial resources, I am in awe.

My hunch is, though, if asked ‘how do you do it?’ their responses  would probably mimic one of my own.

In the last few days, I’ve read about mothers: living through episodes of their child’s dangerously aggressive and/or dangerous behaviours; rushing their child to a hospital emergency; watching their child go through a surgical procedure; fretting over a daughter’s promiscuity; negotiating with police about their child’s arrest; and begging their child’s principal not to expel him from school.

These mothers amaze me. They express the horrors they are going through, they sometimes question how they will make it through the day (night, week or month), worry about how they’re going to pay for all the therapies their child needs, and often ask for support from other parents who can relate to their experiences.

Yet, considering all their daily troubles, I would say that in virtually every entry I read, the strongest feeling that I pick up from the parent (usually mother) is one of great love for their child (not anger).  And, yes, there’s another prominent feeling: hope – that one-day things will be easier for their child, and therefore, them.

As I enter the frenzied hustle and bustle of getting ready for Chanukah this year,  I think about all the other families raising children with special needs who are preparing for their own Christmases, Kwanza, Diwali, or whatever holiday it is they celebrate during this season. And I ask, with greater poignancy than ever, “How do they do it?”  

How do they buy presents, go to school concerts, trim trees, stuff turkeys or glaze hams, attend religious ceremonies, make sure everyone has proper holiday clothes (or at least clean), roll out cookie dough, send out holiday cards, make merry, look after their families and still do all the unbelievably challenging, enveloping and all-encompassing jobs required to raise a child with special needs (see above).

I don’t know the answer. Perhaps they don’t think they really are doing it all that well. Perhaps they’ve decided to ‘cancel’ the holidays this year and stuff their heads under pillows and hibernate until the season has passed. And maybe ‘they’re doing it all,’ with the same love and devotion in their hearts like they do every other day of the year.

To all these moms, dads, caregivers (and I never forget about the caring professionals), I offer you, with the greatest of respect and admiration, my greatest wish for you this season and beyond ­ – peace. 

Ahmed, Me and the CBC

I hopped into the taxi, gave the driver my destination, then sat in silence for only a few seconds before he asked:

“Would you like to hear the radio?”

“I don’t think so right now, but thanks for asking,” I answered. “You’re the first cabbie to ask,” I said, thinking of the many times I’d gotten into a car with the music blaring.

“You know, according to the book,” the driver said, "we’re suppose to ask the customer before turning the radio on.”

“I didn’t know that,” I said.  “I’ve had a couple of nice experiences lately, though. Twice when I got into a cab, the driver was listening to the CBC. I happen to love the CBC.”

“Ah, yes, the CBC, my favourite, too.”

‘Ah, yes, the CBC.  My favourite, too?’  His comment both surprised and delighted me. It challenged my stereotype of who a typical CBC listener is, and like all stereotypes, it was good to be challenged. I knew my driver was an immigrant because of his strong accent. As well, I was quite sure he was Somali. I had become familiar with their distinctive facial physiognomy since large numbers of Somalis immigrated to Canada in the 1980s.
          
I wanted to ask my driver how he came to his love of the CBC, but didn’t want to make him uncomfortable. I thought it best to talk about myself first.

“The CBC has played a big role in my life,” I said. “I’m an immigrant to Canada—from the States. Most people think there’s not much difference between the two countries, but there really is. I had a lot to learn about my adopted home when I first came here in 1970. Listening to the CBC helped me feel connected and less lonely.”

“Same here,” he said, introducing himself as Ahmed. “ I’m from Somalia. When I first came, I would listen to the CBC all day, everyday. I learned about Margaret Atwood and Pierre Berton. I heard Gordon Lightfoot sing the ‘Canadian Railroad Trilogy’. I still listen to the station, and it’s good, but it’s not the same.”

As a longtime listener, I agreed. But before I conjured up my list of greatest laments and losses, he beat me to it. “I guess the death of Peter Gzowski and Morningside was the worst. I’ll never forget the day I picked up The Globe and Mail and saw a picture of Peter on the front page with two dates listed above his photo. I knew what they meant. I was so very sad. I couldn’t stop thinking about him.”

Yes, the two dates, birth and death. I, too remember seeing them.

“You’re older than I thought,” I said. “Peter Gzowski goes way back. His last radio show aired in 1997. He was really special wasn’t he?”

“Shelagh Rogers and Barbara Frum, too,” Ahmed said, referring to two other well-known CBC broadcasters. "They would interview people in Newfoundland, then B.C., then the Yukon. I’d take out my map to see where those places were.”

How well I too remembered Shelagh's contagious laugh on Morningside and Barbara’s probing interviews on As It Happens. But it was Peter who touched me the most. Home every day with my colicky first child, he made me feel I was part of the larger world. I felt like I was eavesdropping on wonderful conversations. One day he'd be talking to a woman in the prairies putting up Saskatoon berries, and the next to a man in Quebec on his way out to tap his sugar maples. Inevitably, we’d get a full weather report from these people, find out whether it was a good or bad year for whatever crop they were harvesting, and get a recipe for some kind of jam before Peter hung up.

Some people I knew hated these segments. Thought they were hokey, a little too homespun for their tastes. Not me and Ahmed. We loved hearing everyone’s stories. We thought they actually had the power to pull the country together. Or at least make us feel at home.

“I met so many interesting people.”

“Me too.”

We both laughed, realizing it was happening again. The CBC had brought us, if not the country together.

O Canada!

I can't explain why it took me so long, but after forty-one years in Canada, I finally became a Canadian citizen yesterday. It was a remarkably moving experience.

I was one of 72 people from 36 countries who swore allegiance to the Queen (and her heirs!), promising to be law abiding citizens. It didn't take me long to break my pledge though. Probably no more than ten minutes later, I jaywalked across the street while walking with my son and husband on to our celebretory breakfast. Oh dear.

The judge read the list of countries off, beginning with Afghanistan and ending with Vietnam. Couldn't tell if I was the only American in the room, but I can say that chances were pretty good that I was the only person with blue eyes.

I wasn't the only person choked up when the judge told us we were now, officially, safe in our new home. She said that many of us, particularly the refugees amongst us, had endured great hardships to get here, suffered long and worked hard to reach this day (as opposed to me who just sat on my duff for 41 years).

While I was teary, the young woman in front of me just started sobbing when the judge said this. I looked around and knew the room was full of remarkable stories, probably like hers.  I'm sorry I didn't get to hear them.

I think it was a moving day for all in the room. Heartfelt smiles, tears and inspiring words. All made me want to stand up, be proud and roar:  I AM CANADIAN.

Letting Go: it ain't easy

“We’ll meet you at the Wellesley subway stop at 10:45, ok?”

My husband is talking on the phone to our son Michael at the group home where he’s living. “You remember how to get to the Wellesley station from there, right?  So we’ll see you there at 10:45, a quarter to 11. Do you want to write that down so you don’t forget?”

“No, that’s okay, I’ll remember,” Michael says to my husband. They then hang up.

I’m standing in the background, listening to the conversation. I want to jump in before my husband ends the call. I want to say, “Tell Michael you’ll wait while he gets a piece of paper to write it all down. Or, at least, have him repeat the time back to you and describe how he’s going to get to the Wellesley station.” 

But I don’t say anything. I keep my mouth shut and get dressed. I can’t always be jumping in, trying to micromanage everything and everyone interacting with my son. At some point, I have to let go, at least a little. Michael likes feeling independent. I have to give him a chance.

We’re meeting up with Michael to go to an art gallery together. My husband Robin and Michael take a woodcarving class each week, and their teacher is exhibiting his sculptures at a downtown gallery near the Wellesley station. Michael, like us, was really looking forward to seeing the exhibit. I so very much want everything to go smoothly.

If all goes well, we’ll be meeting Michael in two hours. I can’t relax, though. I know there’s a very good chance that all will not, in fact, go well.  It’s happened too many times before.

Michael, now 24, has Fetal Alcohol Spectrum Disorder (FASD). One of the symptoms he has, common in people with the disorder, is a poor memory. What he may know one day may not be retrievable to him the next.

Sure, he once knew how to get to the Wellesley station from the group home where he’ll be coming from.  But will he really remember how to get there today? Maybe or maybe not. Will he remember what time he’s suppose to meet us?  Maybe, maybe not.

To complicate the impending rendevous, Michael often believes he knows something when he really doesn’t. He often says he knows something when he really doesn’t. He often pretends he knows something when he really doesn’t. And, as I mentioned before, he often knows something one day, then not know it the next.

Therefore, both my husband and I know the chances Michael will show up at the right time and place are 50/50, if that.  

Robin and I arrive outside the subway station a little early just in case Michael shows up ahead of time and gets worried if he doesn’t see us. I can see from the look on Robin’s face that he’s as anxious as I am. We stand together for awhile, then he moves away, leaning up against the building. He pulls out a crossward puzzle he’s been working on.  I move into the sun and pull The Globe and Mail out of my bag and begin reading. I look over at Robin, now pacing and biting his lower lip.

Everytime a rush of people come out of the subway station, I peak up from the paper to see if Michael is one of them. He’s not. Something churns in my stomach.

Fifteen minutes have passed. It’s now 11:00. Then 11:05. Michael’s now 20 minutes late.

“I’ll call the group home to make sure he’s left,” Robin says. After a brief call, he tells me, “They say he left around 10:30, so he’ll probably be here soon.” I’m not totally sure whether Robin believes it, but we both take our positions again. Neither of us wants to admit defeat.  So we wait.

I’m starting to think we may have to consider giving up, but I don’t say a word. Neither of us wants to be the one to say, “I guess we better go on without him.” 

I took comfort in knowing that though we would be terribly disappointed if Michael didn’t show, we at least wouldn’t have to worry about him. Even if he got lost finding the subway station or messed up with the timing, he would know how to get to our house. We’d practiced that with him on the subway line for what seemed a million times and a million different points on the system.

I kept looking at my watch. It’s now 11:15. He’s half an hour late.  11:20, 11:25.  11:30. Now forty-five minutes late.

“What do you think?”  I say. “Should we just go?”  I really don’t want to, but it was probably time.

“I guess we can safely assume he’s not coming,” Robin responds.

And wouldn’t you just know it. Right then, Michael walks cheerfully out of the subway station in his black hoodie and jeans with a big grin on his face, looking as proud and cheerful as could be.

“Hi, Mike,” I say, putting my arm around him. “We were just about to leave. We were afraid you got lost or something. You’re forty-five minutes late.”

“Really? he said. “What time was I suppose to be here?”

“10:45” I say.

“Oh, I thought you said 11:45.”

“Nope, 10:45. Did you have any trouble finding the station?”

“Naw, I know the subway system really well.”

“We’re just glad you made it,” I said. We really were.

Wounded in the Womb

Wounded in the Womb

I’d like to alert my readers to an excellent series of articles published this week in the Winnipeg (Manitoba) Free Press about Fetal Alcohol Spectrum Disorder (FASD). Wounded in the Womb, is available for reading online at http://www.winnipegfreepress.com/special/fasd/   

A wide variety of articles, research findings, photos, diagrams,  interviews and even videos about FASD can be found under the following topics in the series:

    * What is FASD?

    * Crime and FASD

    * Child and family services

    * FASD in the schools

    * Diagnosing FASD

    * Prevention and solutions

    * The Voices of FASD

I commend the Free Press editorial staff for developing this special series. Fetal Alcohol Spectrum Disorder (FASD) is considered a significant problem in Manitoba by many FASD advocates in the province, though they’re concerned the real number of people with the syndrome, as elsewhere in the country, is underdiagnosed, and therefore, underserved.

According to an article published in the Free Press last February, FASD experts say the commonly used estimate of a 1% prevalence rate of FASD in the province is seriously lowballing the number. They believe the danger of this guesstimate is that it’s and used to justify the paltry sum of money allocated by the government to FASD prevention and treatment.

Brenda Bennett, director of FASD Life's Journey said, "We're all just guessing."  Bennett, an advocate for adults with FASD in Canada says, "When I know the majority of people with FASD in Manitoba go unidentified and unserved, it's really heartbreaking.

“If each child were screened for FASD at birth or in elementary school, she continues, "they wouldn't be a mystery to every teacher, every foster parent, every social worker, every guidance counsellor, every judge and legal aid lawyer..."

Unfortunately, there’s no easy test like a blood test or brain scan to diagnose FASD, and according to the government, no mass scale screening for it was on the near horizon in the province. They’ll address the problems associated with FASD through education and programming, they say.

Huh? Ok, sure, you can educate the public about the dangers of drinking alcohol during pregnancy without having a body count. But come on. Without knowing who has FASD, who exactly is their so-called “programming” going to be for?  You need a target to target programs, don’t you?

Albert Chudley, a Winnipeg pediatrician, professor and FASD expert sees this as a problem, too. "For 18 years, we've been dragging our feet, collectively," said Chudley. "To say, 'We don't want to count, we just want to prevent' -- the two are very closely related.”

Young people in the province with FASD may be a long way off from getting young the treatment and programs they need. Besides difficulties in diagnosis, Chudley identifies another impediment. “FASD is also seen as an aboriginal disease so it goes under-reported among non-aboriginals.

According to the February Free Press article, “Experts such as Chudley say it's likely doctors treating the troubled children of white, middle-class parents zero in on similar cognitive problems such as attention deficit hyperactivity disorder and never think about prenatal alcohol exposure.”

Wounded in the Womb has timely, important information about FASD. Check it out. Maybe we can all get our local newspapers to do something similar?