Monday, February 28, 2011

A Mac and a grizzly

This was the winter wonderland yesterday, but now everything’s melted.

I have two stories for you today. Last Thursday I brought Ben for his weekly physio session. Ben complains bitterly but he is always in a chipper mood afterwards. As we walked down the hall to the 2nd floor rehab gym, there lying on the floor was a two-inch grizzly bear character. Ben was delighted with this find, but I told him we would put it on the bench in case someone lost it and was coming back to look for it.

Imagine my surprise when I got on the elevator on the 5th floor this morning and the same Grizzly was now sitting on the handrail inside. Ben loves to send his characters out into the world in different ways, and it seemed this Grizzly had had a bit of an adventure since last week.

Remember my post about my urge to buy the new iMac computer so that we could put the Proloquo2Go communication software on our iPad? We couldn’t modify it with our old Mac computer.

Well, we got the computer on Saturday. “You know why I have to do this, right?” I said to D’Arcy. “Yes, I know why you have to do it, even though I think you’re pulling at straws,” he said.

The keyboard is so tiny on the iPod that it’s challenging to use and I’m hoping the larger keyboard on the iPad will be easier. I think the picture symbols will be easier to see and with the latest technology, I should have a leg up in trying to customize it with our own photos. Ben's psychologist also recommended the iPad.

So we walked through the Eaton’s Centre carrying our big Mac box and then yesterday D’Arcy spent four hours on a support line with Apple because for some reason we couldn’t download the Proloquo app without losing the existing apps on our iPad. In fact, what I wanted to do was transfer the most recent backup from the iPod to the iPad but it at first proved impossible. You know how everything about a Mac is supposed to be intuitive and simple? Not so much for us!

In order to get Proloquo2Go on the iPad, we had to wipe our other apps, including the great Sign 4 Me app. After hours of instructions and comments like “That’s odd” from the support person, D’Arcy was rendered incapable of speaking -- about iPods or iPads or iMacs.

“I simply don’t know,” was the only way he answered questions last night.

I was later able to restore a backup from the iPod onto the iPad – minus the photo libraries. While restoring it, it said it could transfer some items and not all.

So now I have a ton of work to do to simplify the vocab and get real photos in there.

And Emma from Greece was correct that there is a way to 'turn off' the ability to delete the Proloquo2Go app, but we haven’t figured it out yet.

I have to thank Pam, a support person from AssistiveWare, who is trying to help us. Pam is the parent of a young adult with disabilities and I'm hoping will write us a guest blog.

Education and intellectual disability

It's interesting to see how divergent approaches are to teaching students with intellectual disability.

Here in Toronto, we've found the emphasis is on life skills -- even if the child is perfectly capable of doing academic work at their own level.

I'm told that most high school students with intellectual disabilities don't get high-school diplomas. I'm not sure if that's because they're directed into non-credit life-skills programs in Grade 9, before they're given a chance.

One of the students who did beat the odds is Ashif Jaffer. But the Toronto student with Down syndrome is now in danger of losing his first semester at York University. The university won't allow a teaching assistant to attend exams with him -- an accommodation he had at high school. See School denies access: student.

Meanwhile, U.S. dollars are being invested in college programs specifically for students with intellectual disabilities: College uses federal grant to encourage students with intellectual disabilities to attend college.

Friday, February 25, 2011

The transition learning curve

I mentioned a New York Times essay by Susan Senator (photo left) in this blog about youth who won't live conventional adult lives. Susan is the author of Making Peace with Autism and The Autism Mom's Survival Guide. Susan left a comment on my blog yesterday and I asked if she could share a bit about her son Nat's move into adulthood (photo right before his prom). As the parent of a child who won't have the conventional job or college schooling, I was struck by a comment Susan made on a Linkedin group at Hopeful Parents: "I'm Susan Senator, parent to Nat, 21, dx severe autism. He has a bright future ahead of him and I am going to make darned sure that continues!" A bright future?! This was something I had to investigate. Susan suggested I post a recent piece of hers about searching for a Day Program. Thanks Susan!

The transition learning curve
By Susan Senator

I’ve begun Part II of Nat’s Transition to Adulthood: the Day Program. November 15 is right around the corner, so that is my goal date for having his entire Transition setting set up. He will leave school that day and move out of his school residence soon after. This is a lot to contend with emotionally and pragmatically, for Nat and for my family. That’s why I’m writing these blog posts: to tell all of you out there to get going as early as possible in your research and in your emotional process. You look at your little guy now and think, “Oh, God, I can’t imagine him grown up. What will that be like? What will his peers be like? Will they be like a bunch of lost souls shuffling around from van to mall everyday?”

I will get to that. The only lost souls are those who are not feeling happy and purposeful in their lives. That includes you. I hope you are not a lost soul. But more about that later. I suggest you approach this the way your autistic child approaches learning any new skill: break it down into baby steps. Think about your modus operandi, how you operate, how you achieve things, and go with your own model. Maybe you like to do things methodically, one appointment after another. Maybe you do things in bursts, like me: one appointment or maybe ten, and then none for months. Whatever works.

First you have to learn about who you are dealing with. I would try to understand the key players, the names of the departments and organizations involved. How do you learn this? You go to a workshop. Pick one workshop for this year, one Transition to Adulthood workshop. Write down your questions. Ask a few of them, but not all. Keep in mind that as you dip back into this stuff, it will clear up, concept-by-concept. There are Federal Programs and there are State Programs. Federal are for everyone, State differ. Who is your State point person? Cultivate a relationship with a friendly introduction via email or phone.

Next you learn about the programs themselves, what they offer. SSI, SSDI, Section 8, Developmental Services, DayHab, Residential Supports. Don’t worry yet about how to get into them. Just learn their function. I tried to figure out all of Section 8 in one fell swoop: forget that. These days I’ve been touring centers in the Greater Boston area that offer a program M-F, 9-3. These are typically Medicaid-funded (Federal $) therapeutic programs, i.e., no employment/earning component. These are called “DayHabs.” The centers vary in quality and goals; some do highly individualized curricula and others have more of a general schedule with a choice or two. They go out into the community (it should be much more than malls, and if it is malls, then be sure your guy is learning money skills and dealing-with-the-public skills). Visit the program. Tour it and get a good feel for it and the clients it serves. Are they engaged? Happy? Watching TV? Can you imagine your guy there?

Imagine your guy there: he is part you, part the child he is now. So you think about how you would feel there, but not using your deep and complex social knowledge. Think about what he likes to do, and if you can’t name a concrete activity, (mostly Nat likes to be active, with people but not talking to them), figure out when he is happiest. Does this place match that?

(Be prepared for developmentally disabled adults. They are not as good-looking as kids with DDs. Think about it this way: no adult is as beautiful as a child. We age and uglify. Sorry. But don’t look at these people as lost souls, broken, pitiful, sad. An unusual face is just that: an arrangement of features that you don’t see everyday. It means nothing. A voice that speaks in grunts or not at all is still fully human, FULLY human, with an inner life, even if that inner life is pictures swirling around his mind, or beautiful sounds. I don’t freakin’ know! I’m just saying, get past what they look like. It’s just a body. We can’t all be magazine people.)

Many of these centers (also known as Vendors, or Service Providers) also have Day Programs, which are not DayHab, or therapeutic only. Day Programs often have a volunteer or employment option, but you need to find a way to pay for it.

Next you find out how to pay for it. You need to find out if a program is an entitlement, or Medicaid/Federal money, or if it is something you have to push for with your Developmental Services point person (see above). You need to find out how to set up your savings so that they can help your adult child someday but not get in the way of his funding. I still don’t really understand this one, but I have a lawyer who does. You are looking to set up a Special Needs Trust.

About guilt: try not to go there. Even if you have resources to support your child, you don’t want to get into a situation of depending solely on that, especially when you are gone. You have to think of your adult child as an independent adult — that is his right, it is about his dignity. These programs help him become an independent adult, as much as possible. We are so lucky that our society attempts to support those who cannot do it all on their own. We are a society that spends tons on building roads and highways and bridges. We are a society that subsidizes farmers and to some degree, big corporations with tax breaks. Everyone gets help and benefits from our government to some degree. Why shouldn’t your guy? Why is one considered a handout and having our roads built for us considered a given? Think about it. I wish we could all chip in and get along.

I have listed for you the big steps. You break them down. Do one thing at a time. Start a notebook. Save business cards and telephone numbers. Build your network.

Above all, give yourself a break, take your time, but still: do it.

Wednesday, February 23, 2011

The game of Scrabble

Something miraculous happened last night.

My son Ben, 16, played a game of Scrabble with me. This was miraculous because Ben has a terrible time focusing, which makes game-playing challenging.

But this time Ben was interested. He even enjoyed moving his letter tiles around to look at word possibilities.

He came up with “ARM.” Then he came up with “ALY” – the name of his cousin, though she uses an “I.” I was ecstatic. Later he produced “ICON.” I don’t know if that was just a lucky guess because he couldn’t speak to explain it.

I had to keep score because Ben can’t add.

We had a lovely time, but I couldn’t help thinking that he would never be able to play at one of our family gatherings, with his cousins.

Just the day before, we celebrated my birthday at my mom’s house. Scrabble is a competitive game in my sister-in-law’s family. Ben’s cousins are brilliant students – one in second-year university already holds a prestigious research grant. My SIL rarely lays Scrabble tiles down without forming double words and knows all the obscure ones most people have to look up in the Scrabble dictionary. My other children joined in the game and it moved swiftly around the table, with words like ‘FEDORAS” and “FOLLOWED” filling the board.

Ben sat off on his own in a chair, reading an old picture book that had something to do with acorns and adventures and making the odd sounds he produces because he can’t speak. He couldn’t participate because of the fast pace and complex language.

And somehow I couldn’t help thinking that this Scrabble game represented the value our family had always placed on education and academic learning. And it made me think how I, too, in the past had revered intelligence and somehow felt it was an ability a person earned through hard work. To me it seemed to be a higher or more refined quality, let’s say, than physical beauty or athleticism. In fact, I once had an argument with a university friend who said if she had to choose between beauty and brains, given our culture, she’d choose beauty. To me that showed a certain superficiality and materialism that I didn’t associate with intellect.

But since my son Ben was born I’ve had to acknowledge that my intelligence had little to do with anything I ‘did’ or ‘‘worked hard at’ but was, instead, simply a gift bestowed upon me at birth. I was lucky.

My son was unlucky and will always struggle mightily to learn and to retain information and ideas in his head.

He can’t join in the family games of Scrabble and he won’t enjoy the intellectual growth, social life and freedom of university.

And while I was sitting there watching our family play Scrabble and Ben was babbling to himself and reading or playing with his Star Wars characters – no doubt with intricate storylines playing themselves out in his silent imagination – I couldn’t help remembering that when I was pregnant with him, my SIL had said: “We have to be careful not to compare our children.”

Sometimes I envy my brother’s life. His child-rearing is coming to an end and he’s able to take great satisfaction and comfort in his children’s burgeoning independence.

But rather than wishing that Ben could be more like his cousins, I think my real wish is that my family better knew the inner world of Ben. They don’t know his sign language and they don’t know how to interact with him. I don’t know if they’re able to see past his odd and anxious ways.

I wish I could tell them about how Ben came up with “ARM” and “ALY” for Scrabble and they’d be as excited as I was. I wish I could tell them that when I was prodding Ben to send an e-mail to his dad yesterday, he chose the correct “too” in “I miss you too” and my heart leapt. But we don’t have a common frame of reference anymore. We’re still playing Junior Scrabble and they’ve moved on to post-graduate work.

I assume they feel sorry for us. I think that’s how I would have felt about our situation, before it happened.

Tuesday, February 22, 2011

A life of being, having and doing enough

I read about this book and my heart softened for a moment, and I took a deep breath in and out.

Doesn't it sound grand? A life of being, having and doing enough.

Wouldn't it be sweet if we felt we were 'enough' as parents of children with disabilities and that our children were 'enough' as well? Not 'enough' in the sense of 'good enough' -- but really, we wish we and they could be 'better' -- but 'enough' in the sense of 'full,' complete' or 'whole.' 'Enough' so that you could look at your child and only feel gratitude swell in your heart?

Instead, this morning I found myself feeling frantic about moving Ben's development forward.

I haven't had time to revise the communication app Proloquo2Go on his iPod and to actively get him using it. I gave the iPod to Ben on the weekend and he deleted Proloquo (a mistake, he said). My husband then spent ages trying to put the app back on unsuccessfully. He then attempted to put it onto the iPad I bought at Christmas, even though we couldn't afford it, because I thought it was a piece of technology Ben had to have. In doing so, he realized our Mac computer at home was incompatible with the iPad because it's so old.

So by the time I got to work I was feeling desperate that I HAD to buy a new Mac computer. In fact, I found myself in a place I've been so many times over the years with Ben. Where I latch onto some treatment or technology or experience that I believe will be life-changing for him. And I tell myself that if I can only get my hands on it, he'll be able to break through a disability barrier and realize himself more fully as a person. And I launch into all kinds of mental arguments as to why this is the only viable course of action.

Yet when I look back, I see I've sometimes made choices that weren't wise and didn't make sense -- or focused on the wrong things at the expense of others.

And it makes me wonder about finding a balance between forever questioning what 'more' can be done to help my child (in my case almost an adult) and starting from a place of loving and appreciating who he is, right now, and what we already have.

Friday, February 18, 2011

Quick update

I was fascinated by this blog by Gina Gort who took a 10-day 'retreat' away from her family, which includes three children, two of whom have disabilities: Return to myself. It sounds wonderfully restorative.

We are holding a planning day for Ben on April 9 with the help of facilitators from Community Living. This is a two-hour session where we bring together some key people in Ben's life to look at his strengths and dreams and how we can support him in leading a rich adult life. If you've done this kind of planning, do you have any tips on preparing?

This is an interesting interview about the ethics of prenatal testing for Down syndrome. It's between Dr. Brian Skotko, a clinical fellow in genetics in the Down syndrome program at Children's Hospital Boston (who has a sister with Down syndrome), and Dr. Lachlan Forrow, director of ethics at Beth Israel Deaconess Medical Center.

Happy weekend! Louise

An open letter to parents

I'm delighted to share a letter written by Caroline McGraw (left) to her parents, William (back left) and Donna Fischer (right), in which Caroline recalls how her parents have cared for her younger brother Willie (back right), who has autism. Caroline writes about “how to see disability as opportunity” at A wish come clear.

An open letter to parents:
On what your children remember

Dear Mom and Dad,

As your 28th wedding anniversary approaches, I’d like to tell you what I remember about how you’ve raised Willie, and what I’ve learned by watching you.

My first memory is of a diagnostic center, the playroom where I waited as Mom and Willie met with the doctors. When you came out, Mom, you knelt down to hold me, and you were crying. I didn’t know what was happening, but I knew that something was wrong. I realized for the first time in my life that you were vulnerable, and that you needed to hold me. Yet what strikes me now is not the sadness of that day, but the beauty of your spirit. Mom, you reached out for me. You drew me in at a time when you must have wanted to push everyone away.

Likewise, you reach continually out on Willie’s behalf, seeking therapies and doctors and medications and activities and services for him. You encourage him in his interests, yet you also allow him the space he needs for himself, to be himself. You have taught me how to count his small victories, to see the steps of progress he makes as miracles.

Dad, I remember how many times you took Willie with you on work trips, on errands to Costco, to Edie’s for haircuts. You’ve made sure to include him in all aspects of your life. And I have never seen you act self-conscious or embarrassed by his behaviors, strange and frightening though they have been. You model a relaxed, take-it-as-it comes attitude for me and for others, and your corny humor dissipates many awkward moments.

In the times when Willie struggled with violent outbursts and self-injurious behavior, you took on bruises and cuts. You made sure to protect Willie from himself when necessary, and you’ve protected us as well. Rarely did you let the pain of keeping our family together show through. I can’t imagine what that’s cost you. You continue to keep the faith as Willie’s condition improves, and that patient trust is bearing fruit.

Of course, these things do not always come easily for either of you. I have seen you struggle. I have seen you doubt your decisions. I have walked with you into the places where there are no ‘right’ choices, only choices less terrible than others. I have sat with you on the floor of our upstairs hallway, none of us knowing what to do or how to carry on.

We have been totally at a loss, and yet we have never been 'lost,' because we have been together.

I love you, and I am amazed by you every day.


Wednesday, February 16, 2011

'In some ways we have a stronger family unit'

This is part of a BLOOM series of interviews with parents who have more than one child with a disability. Andrew Levin (above centre) is dad to Kenneth, 17, and Cameron, 14, who both have autism. Thanks Andrew! Louise

BLOOM: How are the boys affected in everyday life?

Andrew Levin: They’re fully functional in terms of changing, toileting and eating, but they can’t be left to their own devices for any length of time. Kenneth is somewhat verbal but Cameron has very little vocabulary.

BLOOM: What emotions did you experience when you learned Cameron also had autism?

Andrew Levin: I still remember the exact moment when I realized there was a bloody good chance that Cameron had autism. I went to pick him up at daycare – he was less than two – and all the kids were gathered in a circle having some sort of reading or social activity and Cameron was on the other side of the room playing Lego. I remember saying: “Uh oh.” I knew from Kenneth so well that if Cameron was indifferent to what the other children were doing that wasn’t good. In some ways, because I expected it, it wasn’t as difficult. But in some ways I was more devastated because with Cameron being my second child, I knew what autism was. The writing was on the wall. There was no asking “what does this mean?” or relying on someone else to tell me what was involved. I think my wife Nellie and I were both equally devastated, in our own ways.

BLOOM: What practical challenges do you face?

Andrew Levin: It’s one thing to restructure your life to meet one set of special needs, but it’s more complicated to restructure life to meet the needs of two children who are quite different, even though they have the same diagnosis. For example, we can leave Kenneth alone for short periods of time in the house if he knows where we’re going and that we’ll be back soon. But we can’t leave Cameron by himself for even five minutes, because he’s much more mischievous and could get up to something. Kenneth likes going to sports events and we’d like to go as a family, but Cameron can’t stand huge auditoriums. On weekends, when most families go out as a group, we often split up. I take one of the boys somewhere and Nellie takes the other.

BLOOM: Are there other issues?

Andrew Levin: What the future holds is a big concern. I’m a man in my mid 40s and I have two kids who can’t take care of themselves. We have real concerns about down the road when my wife and I can’t care for our kids anymore.

BLOOM: What strategies enable you to manage?

Andrew Levin: Good support is absolutely essential. You can’t do this alone. My wife is a stay-at-home mom and we have a selection of caregivers we call on an ad-hoc basis. In the summer we have a caregiver for each boy for several hours each day, so that each can do the things they enjoy doing. There are resources out there and you have to investigate them. Some may be a waste of time but others are immensely valuable. As tough as it’s been, we couldn’t have done this without support and assistance. The other thing is you shouldn’t hide yourself away because of your children. You need to be out there exposing your children as much as possible to the real world. You don’t want to find yourself in a situation where you’re cut off in your house and it’s just you and your child with a disability. You want to keep visible and active.

BLOOM: How do you relieve stress?

Andrew Levin: My wife will head out for a few hours to get away and I have time to myself at work and go to the gym four times a week. I find that refreshing and it helps clear your mind. The reality is we’ve been dealing with this since 1997 so while it’s stressful, it’s almost our lifestyle now.

BLOOM: What have you learned?

Andrew Levin: I like to think I get less stressed about things that aren’t important. I’m more easy-going. I have no desire to have a job where I work 80 hours a week. Seven years ago I switched from being a lawyer working long hours in private practice to doing legal work for an insurance company. That gives me the flexibility to be home by 5:15 and spend time with my kids. One positive thing about kids with autism is that they maintain an innocence to them which makes them enjoyable to be around – even when they’re older. If my sons didn’t have autism at age 17 and 14 they’d want nothing to do with me. They’d be hanging out with friends. But my kids like to be around me. Notwithstanding all these other issues, in some ways we have a stronger family unit.

Five simple ways to show love

Caroline McGraw posted on BLOOM recently. She has a fabulous blog called A wish come clear: how to see disability as opportunity. She has a younger brother Willie, who has autism, and she is a program director at a L'Arche in Washington, DC. L'Arche is a non-profit, faith-based organization that creates homes where people with and without intellectual disabilities share life together.

I liked her Valentine's Day post: 5 simple ways to show love (today and everyday). Check her out! Louise

Monday, February 14, 2011

How our marriage beat the odds

I was captivated when I read Heather Hamilton's blog:
Diary of a Supermommy. So imagine my surprise when I looked out my office recently and saw Heather (above) and Zack (left) in Holland Bloorview's library. It was a wonderful meeting and now I have a fabulous guest blog to share that I'm sure many of us can relate to. Thank you Heather! Louise

How Our Marriage Beat the Odds
By Heather Hamilton

Marriage is hard work. Add that to a life with kids, even harder. And with a child with special needs, the odds are against you. In fact, some studies show the divorce rate among couples who have a special needs child is up around 85 to 95 per cent! Our marriage has taken its own journey dealing with issues that have been exacerbated by the stress of a child with serious medical problems. I know we are not alone.

From the start, my husband Paul and I each knew the other was “the ONE.” Paul and I adore each other – we have for almost 15 years now. Like most couples, we had certainly had our ups and downs. When our first son Ty arrived, we LOVED being parents together and had a great family life! We took Ty everywhere. When we couldn’t, babysitters were easy to find so dates were frequent! We could talk more when we only had one son around. It was certainly less chaotic with one than three!

When we decided to grow our family, we found out we were having twins! From the moment we heard the news, we were emotional and scared. I was worried about whether I could DO twins. My husband worried about supporting a family of five financially! We never imagined that money would be the least of our problems. When twins Jayden and Zack were born, our little Zack was diagnosed with a genetic problem resulting in many medical issues, including a rare and life-threatening heart defect!

Our family and marriage were forever changed. From the minute Zack was born, we became parents to a child with special needs and advocates, doctors, caregivers and cheerleaders. At the beginning, we were united in our fight to save Zack's life – and love our other boys as if their life had never changed. In those first weeks, we were back and forth daily from the hospital. I would stay all day and Paul would visit early mornings and late at night. We barely saw each other, but we cared equally for our boys. There was nothing that I did that Paul wasn't doing – whether it was late-night feedings, diaper changes with Jayden, driving Ty to JK or housework. We were a team through the hardest time of our lives.

But as time went on and Zack's needs began to reveal themselves – controlling feeding and GERD, discovering his hearing loss, failure to thrive, seizures and physical delays – my role as Zack's advocate/caregiver/doctor became all consuming. I was ‘CEO’ of his little life and I put my all into it. I handled all therapy appointments, with Jayden in tow. I took both boys down to Sick Kids for follow-ups and juggled the feeding and naptimes of two very different boys. The rest of my energy was for giving extra attention to Jayden and Ty. That left nothing for Paul.

My life was a circus, as any mother of a child with complex needs can understand. But while it was stressful, it was also empowering! My wonderful and complicated son brought out so many qualities in me that I never knew I had. I liked feeling confident that I knew my son and what he needed most. I loved connecting with other parents in the special needs community and found comfort in starting my own blog.

At the same time, my days and nights were exhausting and I was overwhelmed. I look back on those days and truly wonder how I did it. I was isolated. It was so hard to leave the house with the twins, carry all of Zack’s equipment and be constantly on alert for the next seizure. My maternity leave was not what I had planned. No playgroups, music classes or baby yoga time. We moved from appointment to appointment and our house was a revolving door of therapists.

I was desperate for adult contact and I was jealous that Paul had it. When my tired husband walked in the door I wanted to talk to a grown up. He wanted to stop talking after a day full of it.

Zack’s needs continued to grow, including insertion of a g-tube. Meanwhile, I grew more resentful, depressed and grumpier!

Why did I feel so alone in this? Why did HE come home for playtime and I had the hard work? Why was I the only one going to important appointments, fighting for our son to get services and caring for our three children? More and more I stopped asking for help from Paul and just did it all myself. Many days I just wanted a “thank you” from my husband, since my son didn’t have the words to say it to me. I just wanted to be appreciated. In fact, I really wanted to be a wife, not just a ‘mom’ and ‘nurse’ to my son.

At the same time, with our decision to give up my career to care for Zack, Paul became the sole breadwinner. He was consumed with his role of supporting the five of us and was exhausted when he came home. He put so much pressure on himself to succeed – meaning extra-early mornings and late nights in order to ensure his job was secure. He was great at helping with laundry and cleaning, but to me that was never enough.

Paul came home most nights in time for bath and bedtime with the boys and he loved playtime with all three, in particular Zack. Paul had been the one to travel with Zack down to the hospital his first night and he had been there when Zack arrested twice. What I learned later was that this was an image Paul couldn’t get out of his mind. It haunted him everyday – and still does.

Paul was exhausted and stressed to the limit. He had crazy demands at work and at home, a crabby wife and he didn’t feel his efforts to keep our family afloat were appreciated. Because I had taken Zack’s care as my priority, he felt left out of our son’s life and ignored. He had become my last priority.

Life, family and marriage were not what we planned. We were sad and overwhelmed by the magnitude of our responsibilities. But we weren’t able to see the stress on the other person. We were so wrapped up in our own daily priorities that we forgot and neglected each other and took each other for granted. We were stuck.

Our marriage was at a crossroads. We both had to change. The journey with our son had taken us to a place where we either needed to listen to each other again, make changes and put our marriage on our "to do" list, or we would become another statistic. We made a choice to make it work and be a team again.

Our first step was to get it all out!

We talked and talked about what we’d been feeling, drank a lot of wine, saw a counselor, read lots of fabulous books together and cried A LOT! It turned out we were feeling the same things: pressured, stressed, neglected, unappreciated, exhausted, guilty and even jealous. We acknowledged that we felt grief...grief for the loss of our dreams for our family and for our son. We were scared for Zack’s future, the future of our other two boys and ourselves.

Paul had never really spoken the truths about Zack’s delays and health issues. While I was living them each and every day, Paul had never used the word “special needs” when referring to Zack. Through this process he learned to accept the diagnosis and the words that came along with our reality. I realized that I needed to begin to let Paul into that world, not shelter him from it. He was willing to share the burden of the tough visits so we did the “big” appointments together. Paul became a partner in Zack’s journey and I accepted his help, so that I could have time to be a wife.

It was great to finally be listened to and to be a listener. Feeling vulnerable and being totally truthful reminded us of just how much we loved and needed each other.

I know that we are not the only couple who have been up against similar struggles. Having a child with special needs seems to amplify all the regular problems that a husband and wife go through. This might not have happened in your marriage yet, and it may not ever. But we wanted to share our story and some of the tricks that we found to allow our marriage to be the special, loving and long-lasting relationship that we both deserve.

  1. Find books to help navigate your way through. Married with Special-Needs Children, More Than a Mom  and any of John Gottman’s books on marriage are our favourites. 
  2. Admit that you both need to make changes to make this work. It takes two to create and repair your problems.
  3. Talk to each other first! Speak honestly about problems as they exist and speak the truth – it’s hard to admit that you're frightened, sad, angry or even disappointed, but it can be liberating to have your best friend, your greatest love, be the only one to know how you are feeling. Share the good, the bad and the ugly.
  4. Build a network of good babysitters and supporters. So easy to say but look everywhere – grandparents, godparents, neighbours, even nurses or nursing students can all be a great resource.
  5. Date again and bring back the fun! A movie, dinner or if you are truly lucky – a romantic night or two away! Even a “home date” after the kids are asleep...turn off the TV, ignore the blackberry and reconnect! Flowers “just because” still make my days!
  6. Find individual therapists, marriage counselors or spiritual advisors for regular or monthly "check-ins." You do this for your child, so why not each other? The needs of your child can be like a roller coaster and have peaks and valleys. Have supports in place for those valleys.
  7. Give each other time to do the things that you love to do alone. For Paul, it’s soccer each Saturday. For me, a mani/pedi with some friends!
  8. Be IN it together! While one of you will be predominantly responsible for your child's care, go to the BIG visits together, make the BIG decisions together and be advocates together.
  9. Take one day a week to send reminders to each other! Send each other a text, email or letter with reminders from your past. What brought you together in the first place? Paul and I both look forward to hearing what attracted us first, what we admire in each other, our funniest story or even our most embarrassing moment together!
  10. Renew your commitment to each other –  write a letter, poem or renew your vows. We were fortunate enough to have my parents stay with the kids so we could go to Vegas together. Paul surprised me with an Elvis wedding to reaffirm our vows, celebrate what we had learned about each other and get excited about our future...whatever comes our way!

Friday, February 11, 2011

In Donna's book, a good life=loving relationships

In The Four Walls of My Freedom, Donna Thomson (centre) recounts life raising her son Nicholas, 22 (front left), who has cerebral palsy and requires 24-hour care. Donna is married to James Wright (back left), the High Commissioner for Canada in the UK, and has a daughter, Natalie (right). Donna generously shares her thoughts on how one can find freedom, choice and wellbeing within any set of life circumstances, including severe disability.

BLOOM: It struck me how you moved from one medical crisis to another with Nicholas early on. How did you personally stay afloat?

Donna Thomson: As women I think we’re socialized to expect that any capable person should be able to cope with any circumstances their baby presents with. I was so exhausted but I thought I should be able to cope. It took me a long time to put up my hand and say ‘I am seriously not able to do this.’ When my daughter was born I knew I needed practical help, and I realized that the only way I was going to access help through government programs was to be dramatic in the language I used. I realized words like ‘family breakdown’ and ‘drowning in my son’s needs’ got attention. I think using that language strategically to get funding helped me understand my own limitations. There wasn’t any question that I wasn't actually drowning. I just hadn’t admitted it yet. It was a while before I found some peer support because this was in the days before the Internet. Family and friends introduced me to people they knew who had a child with a disability and I realized that my church could also be a place of acceptance and belonging.

BLOOM: In your book you talk about others judging you – in how you were caring for Nicholas or whether you did something to cause his disabilities. Why do parents of children with disabilities feel so judged?

Donna Thomson: The moment your child is diagnosed with a disability, they become public property. It’s not the same with an able-bodied child at all. Professionals have a say in how you feed your child, how you hold your child, the kinds of activities you do with your child, and what you allow your child to do or not do. You’re judged on these things absolutely.

BLOOM: I identified with this quote: ‘I remember thinking that modern medicine and the power of love could beat the effects of cerebral palsy. How wrong I was.’ What is it about our culture that leads to the perception that people can ‘overcome’ disability?

Donna Thomson: I think it has to do with the notion of independence as being the core value of our society. There is a great aversion to dependence. I think when you put the individual at the heart of society, as opposed to the family or community, then it’s a natural outcome that you think you will be able to manipulate nature. It’s man over nature, it’s that arrogance that we hold that you would be able to change something that is utterly natural. I would never advocate not doing therapy with our children because we want to enable their potential. However, I think because we define a successful life by independent function – you want your child to live on their own and be employed – we never talk about the ones who can’t aspire to that. The question at the heart of Western society that worries me is that people who will never be independent or employable are not worth supporting. Why would you support someone who could never give back to society what they consume? They’re abandoned.

BLOOM: Does the concept of overcoming disability help explain why good services in childhood evaporate when a person becomes an adult?

Donna Thomson: I think that is true. I also think that policies and supports and funding mechanisms for disability in our society are not set up for the first generation of people with more severe disability who survive into adulthood. Everything has been geared to pediatrics, assuming that people will die before their 18th birthday. And the perpetuation of that idea has been good for children’s charities.

BLOOM: Why as parents of children with disabilities must we redefine happiness and achievement?

Donna Thomson: I think because there’s a lot of interest in wellbeing these days. I think that a lot of people are beginning to realize that having wealth and position in society doesn’t make you happy if you can’t convert your wealth into good living. And what is good living? Good living can be quantified by your loving relationships. I think there are many people who are realizing loneliness and isolation is something that is a contemporary scourge. What our children need in terms of their support is company, and to be with other people. And what our children need is what society needs. When I talk to the people who have cared for Nicholas or been friends with him they say they have been transformed in a very positive way by their relationship with Nick. I think that to a large extent we in contemporary society have lost the knack of neighbourliness that we used to have in more rural communities. And if we put our children at the heart of the idea of neighbourliness, we can use them as a lever to create a new kind of urban contemporary neighbourliness. I’m a big fan of personal support networks and how they benefit everyone in them.

BLOOM: What is the Capability Approach?

Donna Thomson: The Capability Approach is an idea about how people can function well within circumstances of adversity. It’s to do with the factors that allow a person the freedom to make choices to have a life that they value. Amartya Sen wrote about it in the context of extreme poverty, talking about the types of freedoms people need to have the basic level of functioning that allows a person to have human dignity. He was interested in minimum levels, but because I’m a very middle-class person, I want to use the Capability Approach to look at maximum levels of flourishing. I want to know what are the supports and services and policies that will enable Nick to have the freedom to make daily choices to have a life that he values. Rather than to be spoon-fed programs he doesn’t want.

BLOOM: You note that Nick spends most of his time in bed, yet experiences the world richly. Can you explain?

Donna Thomson: Nicholas has a big screen TV in his room connected to a computer in Canada that enables him to watch Canadian TV. He watches the CBC News and Hockey Night in Canada. He’s very interested in hockey and can watch all of the NHL games if he wants. He writes a hockey blog. He does all of this with a lot of assistance. He uses a communication program on an iPad with his helpers. He also has facebook and hotmail and he’s a seller on eBay. He has great friendships with his carers and remains friends with them when they leave.

BLOOM: Many parents of children with complex medical needs struggle to get the supports they need at home.

Donna Thomson:  I think the issue of 24-hour care is an urgent concern for governments. Part of the public discussion we need to have is about a global or national ethic of care that we believe supports human dignity. How many baths does a person need per week, and is it okay to leave a person alone in a room in a facility for two, three, four hours? What’s the cut off? We need to actually make those decisions about what is the kind of care we expect for someone we love if we drop dead tomorrow and they become the responsibility of the state. Then we need to figure out what’s the responsibility of the government, national and provincial, and what is the responsibility of the community, the family and the individual. When making these decisions, I argue we should always think about how we can maximize human freedom to have choice and wellbeing. My guiding principle for policy making and funding is that it be ‘most supportive and least restrictive.’ That, of course, is most expensive.

BLOOM: How can we financially support these services?

Donna Thomson: Given this is the first generation of people with severe disabilities who will outlive their parents, we have to look at how we can mobilize communities to work together to enable a good life for all. This is an international phenomenon and an international concern. In Japan they’re doing a system where if you volunteer to help the elderly or disabled, you get ‘time credits’ you can claim when you need care yourself later in life. Lots of people are looking at models of dealing with an aging population and people surviving with high needs. In the UK they’ve had great success with shared housing that is a bit like fostering a child. You’re paid a bit to take into your home someone who has a developmental disability. We need to look at how we can incentivize care. Most of the volunteers in today’s world are over 50. How do we get people, particularly of the younger generation, looking after one another – volunteering, befriending? All of these activities are good for society.

BLOOM: The Capability Approach is at odds with Western perceptions of what constitutes a good life. How can we change attitudes?

Donna Thomson: I think adversity is the mother of invention, which is one of the reasons I was so taken with the Capability Approach. It comes out of the slums of India. I think the recession is going to be a good thing, in a way, for people. In the UK the recession has hit much more strongly than in Canada. As a result, you will have people forced to live in communal housing. One of the things that’s made our communities such lonely places, particularly for vulnerable people, is the idea of individualized housing. Put someone in their own apartment and they’re supposed to be fine. I think to the extent which we can pool resources and living space and financial resources, and where we begin to have multi-generational families again, that is going to be good.

BLOOM: In the book you mention a time when Nick rates himself low in the area of meaningful work. How can parents maintain their children’s self-esteem when they’re not able to do paid work?

Donna Thomson: That’s a really tough one. It’s very natural and deeply human to want meaningful work in your life. And it’s also deeply human for Nicholas to want a girlfriend. And some of these things may not happen for him. So the job of the people who love him is to help him understand what his reality is, to help him make peace with his limitations, and to help him aspire to his dreams.

BLOOM: What are Nick’s dreams for the future?

Donna Thomson: A girlfriend is probably his number one dream. And that’s probably the most difficult one. He’s looking forward to moving back to Canada and getting season hockey tickets. We’ve talked about him moving out of home and I think he’s starting to get quite interested in that new phase of his life.

BLOOM: How can parents of children with more complex cognitive or communication difficulties assess whether they’re leading the life they choose?

Donna Thomson: It’s very difficult to do. But the people closest to that person will have a strong gut feeling and a deep, fundamental knowledge of that person and if they’re happy. Sometimes comfort is happiness, and things that are very humanly basic, like touch and intimacy in terms of singing and sound. That’s why Snoezelen is so good. We know when our children are enjoying those kinds of physical and spiritual comforts and that is happiness.

BLOOM: Should families use the wellbeing index you used?

Donna Thomson: If you have a strong interest in trying to understand your life and to make it better, the index is helpful.

BLOOM: What key policy changes are needed to give people with disabilities more freedom to choose their lifestyle?

Donna Thomson: A saving mechanism is very important and we should be helping our vulnerable young people to have a savings plan. We have the RDSP in Canada. Couple that with whatever communities can do to incentivize and support networks of support to help someone have a good life in a coordinated fashion, so that it doesn’t fall on the shoulders of one person. People talk about distributed justice. This is a sharing of those responsibilities. At the heart of those levers for a good life is the understanding in society of the worth of a life that is very different, and that dependency is not a bad thing. We all are dependent or will be in our life. Something we need to teach people is how to receive care. I would love to see a Grade 2 class of children sitting in pairs. One sits on their hands wearing a blindfold while the other feeds them. And then they trade places. We need to receive care with the same grace and dignity that we teach children to give care. There are still a lot of people who talk about if they get in a catastrophic car accident and need to be taken care of, ‘just pull the plug.’ That’s because they don’t know how to receive care.

BLOOM: You talk about public/private partnership to support those with high needs. What is an example?

Donna Thomson: I would be interested in looking at funding Nicholas between several ministries. That is a ‘no-no’ currently. I would be interested in having a government program that has to do with digital inclusion contribute to Nicholas’ technology in his room. Perhaps the Ministry of Community and Social Services could fund some part of his leisure activities. And the Ministry of Health could fund needs that are carried out by health-care professionals. That leaves the task of who’s going to pick up the iPad and change the TV channels and talk with him. He can’t do anything by himself. That is, I think, where we have an opportunity to engage the community. For example, I used to get kids from Nicholas’ high school to fulfill their community service hours by coming by to play Playstation with him. That’s how I got them there, but then they became his friends and kept coming after they’d done their service hours.

BLOOM: What can others learn from our caring experiences?

Donna Thomson: I think what others can learn is intimacy and grace. I think when I talk about receiving care well, our children are great teachers. And I think this is a very important lesson for the rest of society. I also think people can learn to listen by befriending someone with a disability. I have learned all of my listening skills from Nicholas. I am a very careful ‘whole body,’ ‘whole soul’ listener. It makes me have a much richer life.

BLOOM: How have you changed as a person as a result of raising Nick?

Donna Thomson: I think I’m not so afraid of death as I used to be. Because Nick has had many near-death experiences. I’ve worried so long about him dying, then all of a sudden I started worrying about him surviving. I’ve thought about death an awful lot. If you read guides to happiness, or to making peace with yourself and having a sense of contentment, most of them say you have to come to terms with your own mortality. I think the experience for me of having Nick has enabled me to do that. I’ve given a lot of thought to what it’s like to walk through the unknown because I never know what’s going to happen from one moment to the next. I had to reconcile myself to the unpredictability of life and that I wasn’t in control. I think that has made me have a greater capacity for joy and happiness. I also think we have to make a choice to try to understand our most difficult experiences in some kind of a meaningful, even positive, light. So, I think that’s a choice. Because otherwise we would remain bitter, and some people do. I choose very strongly not to be bitter. I love my son and he loves me and we laugh our heads off all the time.

BLOOM: Sometimes I think there is a tendency for us to keep our lives private, because they are so different from the mainstream. Did you feel that way before writing the book?

Donna Thomson: It was the Capability Approach that gave me the idea that sharing our experiences was important. Because if someone from the slums of India can have a good life with their hardships, through this idea, then I’ve got something to say about how we can have a good life. And all of a sudden my experience as a mother and Nicholas’ experience and that of our family have real importance to the discussion about what kind of a country we want to have. I really hope the book gives meaning, relevance, importance and dignity to people’s personal experience… but also to us as a whole group who are raising children with disabilities.

Follow Donna Thomson on her blog.

Wednesday, February 9, 2011

The assessment

I met with the psychologist yesterday. She had been doing some testing to see whether Ben was capable of academic work -- at his own level -- as we try to find a better school placement for him.

She used multiple choice, picture-based tests. The first test showed a picture and four different spellings of the item (e.g. glass, glase, glas, glash). He scored at a Grade 3 level.

She then did a reading comprehension test where he had to read a sentence, then turn the page and identify the picture that best illustrated the sentence (e.g. "It is a surprise to see a bus bringing chickens to school."). He scored at a mid Grade 3 level.

His overall score for single-word vocabulary had fallen to a Grade 2, although he knew a number of more sophisticated words in certain areas (e.g. hatchet, mammal, constrained). This score had dropped from when he scored in the average range at age 9.

He did poorly on language tests where he had to follow concepts and multi-step directions because of his poor memory. He simply can't hold information in his head.

The psychologist was pleased that he's retained his ability to read since the school has put no focus on it for three years -- she thought he might have lost it.

She feels he has a mild developmental disability but that in certain areas he scores higher, in the slow learner range. She feels his multiple disabilities make it hard for him to access his potential.

She does think he should be focused on reading, writing and numeracy -- on academics at his level.

I managed to get to the end of the session before I cried, thinking that he is about to turn 17 next month. It was then that I asked: "Is there anything else we could have done to help him?"

I know there isn't. I know we did everything we could. The only thing I regret is not following his schooling more closely in the last three years.

To us, I said, he is precious and unique, with eclectic and quirky interests.

"He seems happy," she said.

A lifeline

I read a post on Hopeful Parents that resonated with me. It was called Get in the pool and in it, the author likens a period of struggling to support her son to drowning.

"The Instinctive Drowning Response – what people do to avoid actual or perceived suffocation in the water. And it does not look like most people expect. There is very little splashing, no waving, and no yelling or calls for help of any kind."  How many times is that us as parents? People look at us and see the “together” image we are trying so hard to portray but they don't see that inside we are actually drowning.

The author talks about her own 'drowning,' when her body began to fail her. I asked her how she rescued herself, and she wrote this companion post: How I stopped from drowning. It's worth a read. Louise

Monday, February 7, 2011

Allen Shawn's recollections

I mentioned a review in the LA Times about Allen Shawn's new memoir: Twin. I bought the book on the weekend and wanted to share a passage. Shawn has a twin -- Mary -- who was diagnosed with autism and institutionalized at age 8. Shawn is a composer and son of William Shawn, a legendary editor of the New Yorker.

I will probably always have to make a conscious effort to connect the Mary who is a part of my life with the scientific information about "mental retardation" and "autism" I have learned. Despite what are called her "autistic features," Mary is far from oblivious to the world around her, and often seems extraordinarily present and engaged. For the most part, she looks at people when they speak to her. She often smiles. At the same time, her impatience and nervousness and frustration, even her unexplained laughs and bursts of muttered commentary, are constant reminders of forces and reactions within her that remain mysterious.

The textbooks about autism are written by the non-autistic. Intelligence tests are designed by the neurological "winners," the verbal. What about those things that cannot be understood from outside and cannot be measured? Sometimes whole inner worlds come to light in those who can barely speak.

...I suppose that even if I will never be able to "understand" her in normal terms, I still balk at defining Mary in terms of what is broken about her, and I don't want to, any more than I want to define myself as only a person with phobias, or as only a short person. She is who she is.

Friday, February 4, 2011

'I'm part of a whole new world'

I heard Chris speak at a workshop here at Holland Bloorview. So I was thrilled when he agreed to write a piece for BLOOM. I’m happy to say that since this story was published, Chris has achieved his dream of moving into the non-profit sector and works with a literacy organization. Thank you Chris! Louise

‘I’m part of a whole new world’
By Chris Beesley

My son's name is Mitchell. He's nearly 16 years old. Most 16-year-old boys are eagerly anticipating getting their driver's license and dating girls. Perhaps some are considering going to college or university. Mitchell isn't doing any of those things. And while there are tears in my eyes as these facts stare at me in black and white, I don't feel sorry for him. They're just selfish tears; the result of indulging in momentary thoughts of what might have been.

Before we had children, my wife Lori and I were like many young couples. We were building our careers and chasing dollars. The thought of buying a house and having children was on the horizon, but friends, dinners out and planning our next trip were immediate concerns. Once we found out we were going to have a baby, there was a seismic shift in our priorities. Suddenly, a house in the suburbs and saving money became paramount. So far, life was going according to plan.

Then Mitchell was born with a cleft lip. Nothing severe though. A couple of surgeries at Sick Kids and all was well: just a little ‘speed bump.’ But all was not well and by the time he was two, Mitchell was diagnosed with Fragile X, the most common inherited form of intellectual disability. This wasn't just another speed bump. This was a giant ‘off ramp’ from the road we thought we were on.

Our lives became a series of waiting rooms, tests and therapies. Our initial focus was Fragile X. How could we gain control over it? What type of therapies and interventions were available? We lived in fear of not doing enough, of not doing it fast enough, or of not doing the right thing.

Through all of this, Mitchell was the same cute little toddler he'd been before we got the diagnosis. A wise genetic counselor reminded us of this. Mitchell needed to be valued as a person, she said, not a diagnosis. She recommended we take plenty of time to just be a family. She told us that 80 to 90 per cent of couples with special-needs kids end up divorcing. She gave us permission to say: “Okay, we’re overloaded. We’re not going to go to speech therapy for three months. Nothing bad will happen and we can reconnect as a family.”

In the end, I’ve learned that it’s the family and friends in Mitchell's life who will determine who he is. It's not about what syndrome he has or how much therapy he receives. Mitchell taught me that. And he reminds me of it every day just by being the funny, outgoing, empathetic (and yes, frustrating and exasperating) teenager that he is.

Some people say that God doesn't give you anything that you can't handle. Some say we're lucky that God chose us to be parents of a special child. Others say: ‘Everything happens for a reason.’ These are all comments from well-meaning family, friends and acquaintances. They rarely come, however, from other parents of special-needs children. When we asked ourselves “Why us?” and “Why did this happen to our child?” Lori was very pragmatic and said “Why not us?” and “Why not our child?” I believe that Mitchell came into our lives simply because my wife and I wanted to have children. You can't choose your child's gifts and abilities. I think good parents of typical kids eventually get to that perspective. But having a special-needs child makes you realize it faster.

My focus in life has changed because of Mitchell. I no longer spend all my time on career. I volunteer about 20 hours a month with the Community Living Toronto board and as chair of the Developmental Services Council of Toronto. I also volunteer teach Track3 skiing to kids with disabilities in the winter.

I’m part of a whole new world that’s really cool and that I never would have been exposed to without Mitchell. I enjoy it so much that I’ve taken non-profit management courses and am actively trying to switch careers. I’m interested in how I can make a difference in others’ lives.

So we’re a family on a road that's less travelled but one that's got some unique – even breathtaking – scenery and I'm glad we're on it.

Chris Beesley (with Mitchell in photo) and his wife Lori were part of a group of parents and professionals who founded the Fragile X Research Foundation of Canada.There are lots of great resources on their website.

Wednesday, February 2, 2011

This and that

Claire at Life with a Severely Disabled Child posted a link to this interesting e-zine called The Complex Child. I haven't seen it before.

For any New Yorkers out there, The Sprout Film Festival has posted its schedule of 50 films related to developmental disability this April.

And I was interested to see this LA Times book review of the memoir Twin, by Allen Shawn, the composer and son of legendary New Yorker Editor William Shawn. I had read Allen Shawn's earlier memoir Wish I Could Be There about phobias. Twin looks at how his parents' decision to institutionalize his twin sister Mary, who had autism, at age 8, affected him. The two had shared a room.

"The problem of Mary's sudden departure for me," he writes, "was that it never seemed like a rescue but only a punishment: an expulsion, an exile. To me there was nothing wrong with Mary." This is a book I'd like to read.

Do you have any book recommendations for us?