An essay worth re-reading: Welcome to Holland

I’m buying a new computer soon, so started to clean out files today in anticipation of the transfer from old to new. A real spring cleaning was in order.  I’ve got dozens and dozens of documents stored away that I no longer need, not to mention, dare I say, hundreds of emails that should have made it into Trash, or at least folders, years ago. 

I found plenty of junk to delete, including plans for trips taken and files on subjects I’m no longer interested in. But I also found precious documents and correspondences that I hadn’t looked at in years. Coming back to them now was like reading a diary from years past. My files and emails tracked my life and the people in it.  I loved the email from my daughter telling me how much she loved me, and felt rather proud while rereading an essay I had written years ago for a diabetes education course I had taken.

One of the documents I had saved on my computer maybe ten or more years ago, then proceeded to forget about it. It's an essay called “Welcome to Holland”, written in 1987 by Emily Perl Kingsley. I remember first reading it relatively soon after our son was diagnosed with Fetal Alcohol Syndrome (as it was called then), and finding it quite brilliant, and even helpful as I began taking my first steps toward adjusting to the realization that my son had a disability.

The essay, written in the second person, employs a metaphor of excitement for a vacation to Italy that becomes a disappointment when the plane lands instead in Holland.

 "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

I’m glad I found the essay again in my files. It’s one I won’t be deleting. I think it’s so good, I’d like to share it with you. Many of my readers may already be familiar with “Welcome to Holland”, but for those of you who aren’t, I hope it’s a pleasant, eye-opening and even inspirational read. 

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A lovely essay from my son's tutor

To those of you who have read my blogs recently, you may remember that I wrote about the wonderful neighbour who tutors my son each week. She is a former teacher, now retired, with no specific special education qualifications. But that doesn't stand in the way of her being a fabulous and rich addition to Michael's life. Each Saturday afternoon at a quarter to four, he rushes out the door, hops on his bike and rides over to Ann Lacey's house for his one hour tutoring session.

I'd like to share with you a short piece that Ann wrote about her experiences with Michael.
                                           *     *    *

   
Michael slips quietly in the door, holding a cellophane wrapped piece of carrot cake and a cold can of  Coke. He is early, as usual, by 10 minutes. There is a moment of confusion at the door as the musicians (who have been playing jazz tunes with my partner Dwight all afternoon) gather all their boots and clothes and instruments, and squeeze past him out the front door.
”Hi, Mike!”  they all say.

I catch Michael’s  eye and smile. We are glad to see each other, we like each other.

I am keenly aware that the mild chaos at the front door  is just the kind of confusion and overstimulation that I am not supposed to be providing for Michael when I tutor him. He needs quiet, predictable routine, clear goals; Michael has FASD (Fetal Alcohol Syndrome Disorder, brain damage caused by the alcohol his mother drank while pregnant with him). Michael is now 25.
   
My friend Linda has asked me to tutor her son Michael, who dropped out of school in Grade 9. Michael has told her he’s  interested in passing his GED, and maybe even obtaining a high school diploma. I know little of his school history, but know it has been fraught, and that his learning disabilities are complicated. While I have taught a wide range of children, I have no special education qualifications and no understanding of FASD. But I am interested and willing to give it a try. I tell Linda yes, I will tutor Michael.

Within minutes of the confusion at the door, Michael and I have slipped into my tiny teaching room and are immersed in our book, The Hunger Games. It is a dark story set in a not-very-friendly future, but Michael likes it, and I follow his interests as best I can. I take notice of whatever attracts him, because it gives me clues as I try to understand what makes him tick. There is a great deal going on inside this young man. But expressing it is difficult for him.

We take turns reading out loud, a few pages at a time, trying to finish one chapter each week. We pass the book back and forth when we feel ready. His reading has improved in all ways, and in the most important of ways: he expects the text to make sense.This is an important transition for a reader, and serves as an anchor for further reading development. He used to read through the punctuation, and then get into a muddle of misunderstanding. Now he reads until he understands, sometimes going back over it  more carefully, finding the meaning.

We have read happily through a number of books, including a long and text heavy (not many illustrations) book of Native myths, the Story of Erik the Viking and numerous newspaper articles I have picked out for him. When we finish reading our chapter, we talk and make a quick list of a few words to remind ourselves what is happening, so we can dive in again next week. Sometimes we talk about the chapter or new words or things we didn’t understand, or I give him a short writing assignment that involves going back into the text or making inferences or dictionary work.

When he began with me Michael said he wouldn’t write, that I wouldn’t be able to read it. But I just said, “Well, you can read it to me”, and that was that. His very first writing was done after the tragic death of his dog, Bear. I knew Bear meant a lot to him, and I found an old children’s book, The Tenth Good Thing About Barney (a boy who loses his cat). When I finished I asked him to write 10 things about Bear. Here is what he wrote:

Bear was cute playful was always happy to se me funny loud excited soft cudely beutaful and stubern.

I was moved to tears, it was poetic! The way he listed all those positive attributes, then artfully chose the simple word ‘and’ to set apart the last, most troublesome descriptor of Bear -stubborn!

And what I learned through his simple response is that Michael has a great deal going on inside his head, but that it is difficult to express. When I ask him a question, there is  a space, a waiting, and then, maybe, nothing, or, a one word answer that is actually a profound observation. My first and clearest job was to help unlock the stalled place , to help develop some fluency of expression, some release of his knowledge and observations. This means starting every session with conversation.

Michael is away with his family this weekend, so our weekly session is cancelled. I miss him, I miss the stimulation of our sessions, where I am forced/urged as a teacher to really watch the learner for clues. What does he need next? Maybe I’ll try that game with him! My mind is ever churning with ideas. And, as MIchael continues to develop, new clues will emerge, and his needs will change. No teacher /student relationship should ever be static, but ever changing and responding to the world and others.

One teacher, one learner, facing each other.

Our teacher/student relationship is very much enriched by my collaboration and dialogue with his mother. If I were not able to report many of my experiences with and observations of MIchael with Linda, there would not be so much meat!! Together we ponder the meaning of developments, how we could help each other, and where to go next.

I don’t always know where to go next. Sometimes I try things with Michael, and they go nowhere. He lets me know when he isn’t interested. For instance, when I introduced practical word problems using math operations that we had been practicing (How many can I afford to buy? How much money was made at the sale?) Michael completed them, but was completely uninspired, and I dropped the activity. Many times I get discouraged and feel I don’t really know where I am going with him. And, what seems like progress can disappear the next week. Sometimes his reading seems markedly improved (reading with expression and for meaning), and then he may struggle some the following week.

I try to work with him where he is that day. What keeps me going is the simple fact that I like Michael, I enjoy his humour and interest, and that I  know that the story isn’t over yet.

Location, location, location? Nah. It’s motivation, motivation, motivation.

 I can’t count how many times people have said to me recently, “Your son’s woodcarvings are fantastic. He’s so talented, he should start up a little business.”

My response is always the same. “Yes, Michael’s woodcarvings are fantastic, and he is indeed talented.”  Then, I mumble under my breath (never in a mean way), ‘but you don’t have a clue.’

What these kind and well-meaning people are clueless about is that Michael doesn’t have motivation. Yes, he loves to carve boats and fish and three-dimensional reliefs of animals. He’s even won second and third place for pieces he entered in the Canadian Woodcarving Championships. And, not insignificantly, he feels great when he sells carvings, which he does. Like everyone else, Michael likes money.

So you’d think he’d be motivated to carve and carve and sell and sell. The possibilities are there for him to do so. He could start a little business, perhaps. Create a website to sell online. Try to get carvings into a shop. Go to craft fairs around the province, sell at flea markets and Christmas bazaars.

But it doesn’t happen. It doesn’t matter how talented he may be. Michael doesn’t have motivation. Drive, determination, vision, goal or ambition? I won’t say he doesn’t have any. I’ll just say he doesn’t have enough to motivate him. Ah, yes, motivation.

Michael has Fetal Alcohol Spectrum Disorder (FASD), brain damage caused by the alcohol his birthmother drank while pregnant with him.  Adopted at birth, he was diagnosed when he was six.  Now 25, little has changed (regarding motivation) since he was in public school when his teachers would say some version of  “Michael’s so smart. He just needs to try harder.”  “Michael can do a, b, or c, he just isn’t trying.”  Or, plain and simple, “He’s lazy.”

Not so simple, we’ve learned.

My husband and I have spent the last 20 years, at least, trying to motivate Michael, whether it’s to wash his dishes, shower, do homework, get exercise, and now, develop a steady routine of woodcarving. We’ve used rewards, bribes, consequences, encouragement and undying love. We, like the teachers, believed that he ‘just had to try harder.’ On some level, I think we still think that. We think we’re going to find the magic bullet, treatment, approach, words, reward or encouragement that’s going to make him try harder to do what he needs to do. To motivate him.

One of the symptoms for many people with FASD is low motivation.  Why exactly, I’m not sure, but clearly, it must have to do with brain development. I’ve come to believe over the years, from knowing many other people besides Michael who are considered ‘lazy,’ that perhaps there is no such thing as lazy. Perhaps what we think of lazy is, rather, some underlying problem with brain functioning or confidence, or ability to understand how the world works and navigate within it. Or, maybe these people are just missing the ‘motivation gene.’

It means we have to accept that Michael isn’t ever going to be entrepreneurial. With our help and support, we can encourage him to carve and help him to sell his pieces here and there. But we cannot expect him to start his own little business, set up a website, travel to far away places, place his work in shops.

However, what we can see is that Michael responds positively when people say nice things about his carvings. Encouragement encourages him.  Normally shy and withdrawn, he will actually participate in and even start a conversation about his work when people encourage him to talk about it. When our friends are visiting and they ask about his carvings, he’ll go into his room and bring them out to show. He’s building confidence through his carvings. It clearly makes him feel good about himself. And well it should.

Not surprisingly, it seems that the better he feels about himself, via the carvings, the more we can convince him to carve, sell and keep the positive cycle going.

But guess where all the motivation has to come from. Me. And my husband.  Get his work into stores? Online sales? Go to craft fairs? Sure, if we’re motivated.

As any parent of a child with FASD will tell you, it’s hard to keep the energy up.

I’m not sure where my ongoing motivation to help my son comes from. But I’ll take a guess.

Love. And, probably, my brain chemistry.

The Creative Writing Workshop: From Scars to Healing

We all have scars. Some physical, some emotional. That’s probably why the leader in my creative writing workshop  last month told us, “You have 15 minutes. Write about scars.”

I knew immediately that I would write about the scars my son has on his body from  his compulsive skin-picking habit, one of the symptoms of his Fetal Alcohol Spectrum Disorder; my sadness seeing his scars and inability to help him stop picking; and my hope that people can see beyond the scars to what a lovely person he is inside.

I was in the writing workshop because the volunteer humanitarian-aid organization I’m involved with, Ve’ahavta, (Thou Shalt Love, in Hebrew) was teaching volunteers, like me, to run creative writing workshops for marginalized and homeless people living in shelters around Toronto. Shelters for abused women, shelters for homeless people, shelters for recovering alcoholics.

Ve’ahavta believes that if we volunteers were going to encourage other people to write and share their stories, as was our plan, we should practice doing it ourselves first. Fair enough, because not only would we be encouraging people to write, we would be asking them to read their pieces with other people in the group, and to make comments (positive only) as each person spoke.

My training included hours of writing exercises, then reading my pieces, on topics besides “Scars,” including “Advice I give others but never take myself,” and “Dreams I Still Hold Onto.” We were also asked to write a short biography that included one lie in it. The group then had fun trying to determine what the lie was. We hardly ever got it right.

Ve’ahavta believes everyone has a story to tell and should be given a voice. To encourage this, the organization started a Creative Writing Contest ten years ago. The idea of the contest is to empower the homeless and marginalized through their writing, to recognize that they may have the skills to pursue education or writing, and perhaps find their way off the street.

First prize?  $2000. To encourage entries, Ve'ahavta volunteers went to shelters in the city to talk about the contest, and encourage people to enter a 500 word piece of their choice, on any topic, in whatever, style or format they chose.

The response to the contest has been overwhelming.

Because there has been such interest in the contest from people in the shelters, as well as shelter administrators, Ve’ahavta began running the creative writing workshops, like the one I was being trained for, before the contests. People at the shelters come to the workshop on a volunteer basis only, and get the support and encouragement they might need to take their first foray into writing.

Last year, 2011, the Creative Writing Contest received over 200 entries.

First Prize:  ‘Reflecting Glass’ by Mike Reilly

Second Prize: ‘I Am’ by Henrick Sales

Third Prize: ‘A Dear John Letter to My Drug Addiction’, by Kerri Anne

Matt wrote a piece titled “Reflecting Glass” about the experiences he had when he became mentally ill and hospitalized. Second Prize Winner of the Technology Bundle (Laptop, Digital Camera and 12 Months of Mobile Internet Service) was awarded to Henrick Sales, who wrote a poem,  “I am”. The year’s Third Prize Winner of $1000 was Kerri Anne Moore for her piece “a Dear John Letter to my Addiction”.

Theresa Schraeder, the Grand Prize Winner of the contest in 2005,  has now become a fulltime staff member at Ve’ahavta and was Coordinator of last year’s Special 10th Anniversary Edition of the Creative Writing Contest.

I felt ready to lead the workshop after my training, and was looking forward to my first session at a downtown shelter for homeless men. Roughly 20 people attended the session. After handing out paper and pens, I explained the basics; write anything you want on the topic I give; feel free to read your piece aloud afterward, but if you’re not comfortable, don’t feel pressured. whatever anyone writes or says stays in the room; positive feedback only.

Another important guideline: “We are going to assume everything someone writes is fiction. For instance, when we comment on someone’s writing, we’ll say the ‘narrator’ wrote really honestly about the abuse he received from his father as a child”. The purpose of this rule is to allow people to share difficult experiences they might want to talk about. By assuming what they say is fiction, it could help people feel less exposed  when reading their work to people they may not know well or be open with.

The men seemed keen. The first topic I gave them was “My friends always tell me I should ….”  Some began writing furiously, others stared at the ceiling. Of course, I had to write too, since that's part of the job description of workshop leaders. If we're going to ask other people to share themselves, we should be in there sharing, too.

When the 20 minutes of writing time was over, 15 out of the 20 had written something, and 12 shared their pieces with the group. I read my piece along with them. All were remarkably confessional, honest and nicely written. After someone read, other members of the group either clapped, yelled out “Good job,” or said something brief about what they particularly liked about the piece.

I couldn’t get over how supportive and kind everyone was to one another.

Since we had been together for over an hour, I could tell the men had had enough for the day. I encouraged them to enter the writing contest, whose final entry date is March 12, 2012.  Several people stayed after the session to talk to me. They liked the writing exercises. Some asked if I could leave them more paper. A few asked for suggestions of what they should write about.

“What you know about,” I encouraged. “And don’t worry about using big words or trying to sound a certain way. Write the way you speak. Write the way you did today. You did beautifully.”

I felt heartened when I left. One of the men in the group, from Ethiopia, had done a lot of writing when he was in his homeland. He said something I have always known myself.  “You never know how much is inside you until you start writing. It all starts pouring out then, doesn’t it?”

It surely does.

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.