No advance, no retreat

I had an advocate look at Ben's individual education plan (IEP) and was told it was in no way meeting his educational needs.

In looking back through Ben's school files, I see that I have been fighting for my son's education for a dozen years, since he began school at age 4.

In junior kindergarten he went to a segregated school for children with physical disabilities. When I picked him up one day I found him "restrained" by straps in a chair because he wouldn't stay at his art table. The principal felt this was the equivalent of a "time out." In senior kindergarten we moved him to a contained class in a Catholic school. His teacher was fabulous, but she didn't have the support she needed from the principal. When I asked for more integration, the principal said many teachers didn't want students with disabilities in their class and she couldn't change their attitudes. We couldn't have the class learn sign language because parents 'might complain.' There was always a reason why we couldn't meet Ben's needs.

The education assistants at the time weren't required to have any experience working with children with special needs. So the most inexperienced staff were placed with students with the most complex learning needs.

We began sending in our own well-trained worker.

When the board said it was changing its policy and would no longer allow families to send in their own workers, we moved Ben to an alternative public school. This school had a lot of parent and volunteer involvement and they were happy to have our amazing worker come in with Ben each day. For two years, three-quarters of my salary went to pay for the cost of this worker. Into our second year, the principal suggested that she could get the board to cover the cost. Against my better judgment, she put in a request. We were told that it was illegal that we were sending in our worker, but that all board funds had been allocated for that year, so that they could not assume the costs. Therefore, because Ben could not attend without his worker, we had to continue paying for that year (the board did assume the cost for the next year).

The upside of the alternative school was that it valued diversity, parents saw sign language as a learning opportunity for their children, and Ben had some authentic friendships. The downside was that the board provided no special-ed services there and the school had poor acoustics for a child with hearing loss.

During these years, we made two trips to the U.S. to look at schools that combined signing and speech. One was in Boston and the other was in Western Massachusetts. We tried to figure out a way we could move there, but my husband and I didn't have jobs that fell into the categories needed for a green card.

In my files are countless letters advocating for my son -- written to people at the various boards and the government. I even have a red file folder called "Ben, Human rights," based on what I understood to be infringements to his rights. My thought was that some day, when I had more time, I would pursue a legal case.

When Ben was about 13, we applied to have him attend one of the provincial schools for the deaf. He was turned down because in addition to sign, he needs speech, and the provincial schools are silent, signing environments.

He attended our local school for the deaf for one year and it was the best education he's ever had. But then he aged out of that school and because he'd had a psychological assessment that said he had a developmental disability, he ended up at a segregated school for students with life skills. We were told he couldn't get his high school diploma.

When I look at his IEPs over the last four years, they move from being detailed and setting high expectations, to being sparse, devoid of any academic goals, and not speaking in any way to who Ben is as a person. There is not a single goal related to reading in his current IEP and yet he is able to read.

Sometimes as parents we second-guess ourselves when educators tell us what we expect for our children isn't realistic.

And sometimes it's not just doubt that derails our efforts to advocate for our kids.

As a BLOOM reader wrote: Honestly, I don't think the board is used to parents speaking up. Everyone (myself included) gets tired of fighting!

But I see glimmers of hope for my son. I know that he will have an unconventional future that may not involve paid work -- but I know without a doubt that he can continue to learn.

His school is sending home some simple language homework, and he is able to demonstrate through it that he can read. Through the typing program he took at Holland Bloorview and the secret messages he does everyday, he is becoming more familiar with the keyboard. Last night we used WordQ again -- a word-prediction software -- and he was able to type a sentence very quickly (WordQ reduces the key strokes needed because you only type the first one or two letters and then select from five predicted words). He asked one of his classmates if he would come to the zoo with him. We are reading Harry Potter. We got a playstation 3 at Christmas and Ben is so adept at video games that his sister thinks he should be a 'computer gamer.' An advocate and a psychologist believe he has the potential to learn. Ben has four years of school left. And I'm determined -- somehow -- to get him the education he deserves.

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Homeschooling: How I did it

In response to a post I wrote about my son's education, Jennifer Johannesen (right) shares why she made the decision to homeschool her son Owen (left) and how she did it. Many of you know Jennifer at her blog YES or NO. Thank you very much for sharing this Jen! Louise

Homeschooling: How I did it
By Jennifer Johannesen

Even before I had children, I knew I wanted to homeschool in an unschooling fashion. Open learning through experience, without text books. Letting the child's interests lead the activities. Getting out in the community and immersing yourself and your family in your environment. The principles of self-directed education greatly appealed to me. When I had Owen, I had to rethink everything.

Owen had multiple severe disabilities, including spastic quadriplegia cerebral palsy, dystonia and deafness. He was non-ambulatory and required full custom seating. His physical disabilities greatly interfered with his ability to initiate activity, express knowledge or preference, or clearly demonstrate his awareness of his surroundings. (Owen passed away in October 2010. He was 12.)

As most of us new moms in these circumstances do, I threw myself into the therapies and early interventions. I was exhausted but determined. Then two years later, Angus was born... a typically-developing child with a whole other set of needs. At some point, I knew I couldn't continue at this pace. I asked one of our early intervention specialists to facilitate a transition to school.

Owen attended several facilities, each possibility deserving their own blog post! But I'll summarize here:

• two years at a special needs preschool in midtown Toronto.
• two years in kindergarten in Markham –  this was our local public school which had limited experience with children like Owen. Because he was not yet in Grade 1 and couldn't yet be officially 'identified' as disabled, he was given a support worker in a regular classroom. Probably the most positive schooling experience he's had.
• two years in a 'contained class' in Markham – junior and senior segregated classes for children with severe disabilities like Owen's, inside a regular public school. Students were integrated into their age-appropriate grades for music, gym etc. For the rest of the time, the children were working through their own individualized education programs with the support of the education assistants, personal support workers, social workers and nurses.
• one year in a fully segregated school in Toronto.

Our experience in this last placement and Owen's increasingly fragile health prompted me to make the decision to break away from formal/institutional education. I was disheartened not by the education (there was none to speak of, but I didn't really care), but rather the lack of connection, beauty and meaningful experiences. I always knew that Owen's time with us would be shorter than most – I feared that he would die with his last experiences in an institutional setting.

Since removing him from school, the quality of all our lives improved immeasurably. But I couldn't have done it without financial assistance and without the fantastic support of the various caregivers I employed. (But again, this deserves a whole blog post!)

I had accessed homeschooling funding in Markham when Owen was much younger – in fact I think we were the first family to request it after the legislation passed, allowing for funding. When we moved to Toronto, the process was slightly more figured out and our CCAC caseworker did a good job in mobilizing the powers-that-be to get us on track.

If you are considering homeschooling your severely disabled child and are interested in accessing funding, here is a short summary of what to do:

• Homeschooling in Ontario is legal. You must send a Letter of Intent to Homeschool to your local public school, who will forward the letter to the Board. Then the Board sends you a letter excusing your child from attendance. You are assumed to be educating your child properly unless a third party (nosy neighbour, suspicious mother-in-law....) complains. Then the onus is on the Board to prove you are not providing appropriate education. As a homeschooling parent, you do not need to submit your curriculum or send reports.

To get funding for homeschooling, there are more steps:

• Generally speaking, your child is eligible if she would have required physical support at school, like a PSW or nursing. A child with 'only' developmental disabilities but who is physically high functioning is generally not eligible.
• I had to find a local community agency willing to flow-through the funds to me. The contracts are managed by the CCAC, which is funded by the Ministry of Health and Long-Term Care. Once the flow-through agency was approved and the contracts were signed, I invoiced the agency monthly and they would write cheques for the workers. The agency would then invoice the Ministry, who would reimburse the agency. The agency receives an admin fee from the Ministry.
• This arrangement worked well for us. I decided though that it wasn't fair to ask caregivers to wait until the middle of the next month to be paid... So I paid them bi-weekly and when they were paid by the agency, they paid me back. I basically fronted the money and I was the one who was reimbursed.
• I interviewed and selected my own caregivers – there was no caregiving agency involved.
• The rate of pay is based on the school board's rate for personal support workers, which in my area was $23.93/hr. I paid this full amount to the caregivers for the time they were on the homeschooling clock. Afterhours, I paid a different, lower rate. Owen's allotment was six hours a day per School Board school day, including PD and PA days. This is the maximum allowed. CCAC determines eligibility for number of hours. Thanks to superstar Clare at Life With A Severely Disabled Child (who occasionally posts here), the total eligible hours can be used 12 months a year, not just during the school months.

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The gift of grace

I've heard Christopher Hopper (left) speak about his son Benjamin (right) at a number of Holland Bloorview events. In this elegant piece he shares how his persective on Ben and his disabilities shifted over time. Thanks Christopher! Louise

The gift of grace
By Christopher Hopper

My first Father's Day gift was my son, Benjamin. He was born June 16, 1996, 12 weeks premature and weighing all of three pounds. For all the joy that Ben has brought into our lives, his birth was one of the worst days of my life. The shock of a pre-term birth following what had been a normal pregnancy, concern for my wife Michele's physical and emotional condition, and the reality that Benjamin might not make it, were overwhelming.

The journey that started that afternoon has had more than a few ups and downs. Following transfer to Sick Kid's Neonatal Intensive Care Unit, Ben was diagnosed with E. coli sepsis. That was the night we almost lost him. While the staff in the NICU were able to pull him through the crisis, the sepsis progressed into a drug-resistant E. coli meningitis.

During this period I worked hard to become the expert on Ben's condition. I read his chart. I asked questions of the nurses, residents, interns and doctors. I participated in consultations with infectious disease and neurosurgery. I was going to make sure that I understood what each of the options were, what the relative merits of each option were, and that no course of action was taken unless I approved of it. To me, Benjamin's condition was simply a problem that careful treatment and time would solve. Ben's medical chart at the time described his parents as follows: “Mom is emotional. Dad is stoic." The reality was that I was a 'kook' who was barely holding on in a situation I could not begin to grasp.

Three long months and one relapse later we were taking Benjamin home. Despite all that he had been through, he was a happy, content, loving little boy.

Our first couple of months following Ben's discharge were quiet and happy. Beyond all hope or expectation, he had survived. With the exception of medicating Ben with phenobarbital to suppress some seizure activity that was a hangover from the meningitis, things seemed quite normal. Then he started to miss his milestones and we got to learn a new vocabulary: cerebral palsy, dystonia, quadriplegia, deaf.

We always knew there was a possibility of some lasting damage, be it from the premature birth, the meningitis, or the drugs used to treat it. In the intervening months since Benjamin's discharge, however, we had allowed ourselves the illusion of normalcy and had begun to hope that we had beat the odds. Well, hope is not a strategy and it was clear that we needed one. From my perspective, Ben's condition was one that we simply needed to figure out how to fix.

Therapies were initiated and silver bullets were explored. But as the years passed a couple of things became apparent. First, what I wish most for Benjamin is the same thing that I wish for all of my children, namely that they live a happy and fulfilled life. I am fortunate in that Ben is one of the happiest individuals that I know and that his life is rich in experience and full of those that love him. Second, the physical challenges that Benjamin faces are ones that he will deal with all of his life. While we continue to engage in therapies for him, it is no longer with the hope of 'curing' him but to ensure that he lives as full and happy a life as possible.

It's 14 years later and I've given up silver 'bullets' for silver 'lining.' Ben has taught me more about grace, love, compassion and happiness than I ever thought possible. Every day Benjamin's mere presence makes the world a better place. Not only his family, but all who interact with him, can't help but come away changed for the better. While no parent would ever wish their child to suffer any of the illnesses that Ben has had to endure, I do feel blessed to have such an amazing young man as my son. And for that, my life is all the richer.

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Welcome to Zach's List

Bloom readers asked for a marketplace where they could exchange used disability equipment.

Barbara De Roo, mom to Zach, 2 (left), has launched one in the form of a website for Canadian families.

At Zach's List, you can buy, sell, donate or exchange children's equipment.

"We were looking for a place where we could find equipment for Zach that was cheaper and we couldn't find it," Barbara says.

"Disability equipment is very expensive and it's frustrating when many families are already short-cashed because they have to work less hours to take their kids to programs and therapies. We spoke to people who had good equipment stuck in their basement and no place to get rid of it."

Barbara set the site up with the help of a number of companies who donated services and expertise. "The response has been hugely positive."

We mentioned Zach's List in the December issue of BLOOM, but we got the URL wrong. Check it out at:

http://www.zachslist.ca/!

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'Good things can happen'

Today I'm thrilled to share a post from DeeAnn Lancaster (left), an American mom who is further along the parenting road than some of us. Here's how DeeAnn describes her son Cody, 29 (right): "Cody has CHARGE Syndrome, is blind and autistic. Despite his disabilities, he is a very happy guy with a personality that seems to draw people to him. Some of Cody's favorite things are swimming, bowling, playing BINGO, and spending time with family. He loves classic rock, holidays and eating macaroni and cheese. Cody hates going to the dentist, eating ice cream (or anything frozen) and bees." Thank you for sharing your wisdom with us DeeAnn! Louise

'Good things can happen'
By DeeAnn Lancaster

My son Cody was born with multiple disabilities. Doctors said he wouldn't live two days, and then we were told he'd never make it through two weeks. Later on, we were informed that Cody wouldn't live past his teen years and due to many complications and surgeries as a tween, we believed this. Cody proved us all wrong. He is now 29 years old.

Life, at the moment, is good for our family, but the journey has been far from easy. When Cody was four years old, my husband quit his job, and we moved to Oregon so Cody could receive a better education. When he turned seven, and after going through a Due Process Hearing with our school district, we made the most difficult decision of our lives and let Cody attend the Oregon School for the Blind. This was very hard for us because we lived about 60 miles away from the school and Cody, at the young age of seven, had to stay in the dorms four nights a week.

Our family moved to another state when Cody was 16 and because of our location, we had no choice but to once again enroll him in the public school system. Cody attended a local high school and really got to experience inclusion. He had some very amazing peer tutors and made many friends. Although Cody didn’t receive a diploma, he was able to attend the graduation ceremony with his class. The entire arena stood and cheered when Cody was presented on stage, making this is a monumental moment for our family.

While most of his peers went off to college, Cody went on to 'Post' High School. During this time, his dad and I searched and found a Day Program we thought would be a good fit for him. Cody has attended this Day Program since his twenty-second birthday and absolutely loves it.

Based on my own experience of trial and error, if I were to give advice to parents of children with disabilities, it would be:

1. More than ever, learn to trust your parental instincts. One particular instance comes to mind when I did not trust my intuition. Cody had been in the hospital for 18 days when he went into respiratory arrest. At that point, doctors finally transferred Cody to a children's hospital in Portland. I remember telling the medical professionals that I thought Cody's shunt was malfunctioning, but they ignored me and continued testing him like a guinea pig. I have often expressed to my husband if I could turn back time, I would stand on the nursing station desk and shout at the top of my lungs to demand someone listen to me. Do not let others, doctors included, dismiss your intuition. Stick to your guns to protect your child.

2. Try not to worry over things you can’t control. Worrying can be beneficial when it prompts you to take action and solve a problem, for example, researching information and becoming knowledgeable about schools, day programs, doctors or legal issues. But when you become consumed with “what ifs” and worst-case scenarios, worry becomes a problem.

As I look at the past, I find it amazing that I have stayed (somewhat) sane. Do I wish things would have been different? Yes. Of course I do! I wish Cody would have been born with a healthy body. However, the experiences I have had because of my son’s disabilities have made me a better person. Cody has touched the lives of many, many people, some I may never know and others who enlighten me by expressing their feelings with kind words like this, written by a worker leaving Cody's Adult Day Program:

"It's my last day today, and I wanted to do something special for Cody because he's my absolute favorite client. There were a lot of days when Cody was my reason for coming to work and I'm going to miss him a lot, so I made this mix CD for him to keep, of songs that remind me of him, or that he really likes. Thanks for everything! Katie Johnson

I want to help parents understand that good things can happen after their kids leave high school.

I started my blog, Snippets 'N Stuff, in hopes that the experiences I've had, both good and bad, will be beneficial to families in similar situations. You can learn more about Cody and I there.

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An education

This photo has nothing to do with this post, other than it captures a moment when people thought outside the box to make my son's dream of flying down a zipline reality.

This post is about education for youth with intellectual disabilities. I've just begun reading The Beyond Access Model, which outlines best practices in including students with cognitive disabilities in regular classrooms. It's based on a four-year demonstration project undertaken by the authors.

I see two issues here. One is the question of whether inclusion is a choice for high school students with intellectual disabilities, or whether the only options are segregated schools or contained (in practice, segregated) classes within a regular school. The other issue is curriculum. Should youth with intellectual disabilities work on academic skills pulled from the general curriculum -- at their level -- or should they focus solely on life skills?

Let me make it clear that I am not implying that inclusion is the best choice for every child. What I am saying is that in the year 2011, I think there should be a range of choices for youth with intellectual disabilities, and one should be inclusion with innovative supports. Not only for the "included" student's sake, but for the growth and development of all students.

I was interested in the Beyond Access Model because it's based on the idea that IQ is hard to measure and quantify, especially in children with communication and movement problems. The book instead puts forward the idea of  'presumed competence:' When we can't be 100 per cent sure where a child is cognitively, why not have the highest expectations and give them access to the general curriculum, with modifications? An important component in this model is to give youth who use voice devices age-appropriate vocabulary (instead of 'functional' words), so they have a chance of conversing with their peers. The model seems to depend on a comprehensive educational team who meet frequently to brainstorm. That's as far as I've gotten so far.

This philosophy of modifying content from the regular curriculum and inclusion stands in sharp contrast to what I have found offered in our local school board. When my son acquired the label of developmental disability at age 13, and was to move to a high school, we were given two options. One was a class for students with developmental disabilities in a windowless room in the basement of a high school. The other was a segregated school for students with mild intellectual disability (I'm still not totally clear what the distinction is). We were told the focus was life skills, but I didn't understand at the time what that meant (or perhaps I did, but I chose not to think about it).

I expected my son to continue to work on academic skills -- at his level -- especially reading and writing through use of a computer. Instead, I've found that the focus is cooking and reading of recipes, an art appreciation class, and a math program for students with developmental disabilities. On his IEP for the latter, his current level of achievement read something like: 'Ben can sort objects with 75 per cent consistency, but often rushes through his work and is disengaged.' Ben has been able to sort objects for years (when interested) so it was a surprise for me to see this as a level of achievement. When I said I didn't want my son to be pigeon-holed as someone who would do piece-meal work in the future (because what if he doesn't choose to sort or pack things?), I was told that these skills translate to other life skills, such as setting a table.

The mandate of the school is life skills, employability and social skills. I was told that the focus is the same in contained classes for students with developmental disabilities in regular high schools. It's a matter of philosophy, I was told, and the philosophy here is so far from that stated in the Beyond Access book that it's mind-boggling. We live in Toronto, a 'world-class' city.

Ben will have a psychological assessment at the end of the month. I was told I had to go this route if I wanted to reconvene his IPRC to look at other possible placements.

What would I like for my son? I would like him to improve his reading skills in a way that can be measured. "We don't have reading teachers here," I was told. I would like him to become more adept at keyboarding so that he can produce written work and better express his thoughts. I would like his interests to be used to motivate his learning (e.g. Star Wars and his desire to be a zookeeper). I would like him to understand basic math. And I would like him to continue learning about the world and current issues and anything else that relates to what typical students learn -- at a level he can manage.

I have heard about Universal Design For Learning in the U.S. It's the idea that general curriculum is presented in a variety of formats using multi-media and technology to meet different learning needs. Is this used here in Canada?

I asked on a recent school visit if Ben might be able to attend a course on reading and writing stories with students with mild intellectual disabilities. Today I was told that he would first have to have his label changed at a formal IPRC (I guess to MID). But then I thought -- these students aren't getting courses for credit, so why would it matter? Why do students with MID only get to take MID courses, and students with DD only take DD courses. Where else in the school system do you see that kind of segmentation?

And then I thought about Ben and the zipline at camp. There were lots of reasons he couldn't do it. He's too weak to climb up to the launching pad. His first year, he made it with a combination of climbing and being lifted. Last year he'd only just been released from hospital following rehab for hip surgery and was unable to walk. I remember as he went into his second week at camp, and I hadn't heard news about the zipline, I sent a message to the directors: "I realize it may not be possible because of his physical status, but is there any way Ben might be able to go on the zipline again this summer? Only if it's safe, of course!"

And the next thing you know, they made it happen. I'm not even sure how they got him up there, but they did.

A surprising thought popped into my head the other night. Perhaps he'll be better off when he's out of school. Instead of fearing the future, perhaps it will be a time of greater opportunity.

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Learning to love the baby steps

I'm delighted to share one of our Parent Talk columns from the December issue of BLOOM. It's written by Ellen Seidman. Many of you know Ellen as the mom to Max (above) and Sabrina who blogs at Love That Max. Ellen, who lives in New Jersey, was named one of Babbles Top 50 Mom Bloggers of 2010. Read below and you'll see why! Louise

Learning to love the baby steps
by Ellen Seidman

I am sitting at the kitchen table with my son Max, watching him move a purple crayon over a white piece of paper. Max is grasping it with all his might, trying to make it do what he’d like it to.

This doesn’t come easy: Max has cerebral palsy, which affects his ability to use his hands. Suddenly, Max draws a squiggly circle. “YEAAAAAAH, MAX!” I squeal as my heart does a happy dance. “That’s a really great circle, buddy!” Max beams at me.

A seven-year-old drawing a circle would mean nothing to most moms. To me, it is a true feat. When you have a child with special needs (or ‘special powers,’ as I like to say), achievements like these are no small things; every single one is A Big Deal. It’s just taken me a long time to appreciate them.

Like any expectant mom, I looked forward to the gigantic joys that would come my way when I had a baby, from first word to first step. Then Max had a stroke at birth. Doctors told my husband and I the worst: Max might never walk or talk. He could have mental retardation along with hearing or vision problems. Cerebral palsy was a real possibility. They didn’t give us a whole lot of hope.

That first year with Max was the bleakest of my life. I constantly watched his movements, anxious that I would spot stiffness (a sign of cerebral palsy) and aching for him to ‘do’ things. I read and reread What To Expect The First Year and endlessly googled information about infant development. I had my mind set on the major stuff: babbling, talking, walking. I kept hoping Max would act like a typical kid. I desperately wanted him to be a typical kid.

My friend Hope had her son the same month Max was born. When our boys were four months old we decided to learn infant massage – seemingly a good thing for any baby – and chipped in to hire an instructor to come to my house and show us the way. The instructor frowned as she maneuvered Max’s little limbs. “He’s got some stiffness,” she said. I was crushed: Even when it came to massage, Max wasn’t going to be like other kids.

Birthday parties for friends’ tots were a certain kind of torture. I’d watch all the other babies crawling around, and wonder when and if Max would ever do that. His muscles were too weak for him to get up on all fours. But he had determination and at 20 months he started commando crawling (picture an army soldier in combat). That was the first time I realized that even if Max wasn’t doing the exact thing I’d been hoping for, he was doing it, just in his own way – ­­­­­and on his own timeline.

On his third birthday, Max took a step from my arms into my husband’s. Perhaps you heard us shouting “YEAHHHH, MAX!!!” We both cried. Finally: a milestone. No, a miracle, because by then we knew Max had cerebral palsy. Within months, he was walking.

Those big kind of advances were few and far between. Yet as time went by, and I acquired patience and acceptance I never thought I’d have, I realized that setting my sights on big milestones would only set me up for disappointment. And so I learned to relish the ‘inchstones,’ as I’ve heard them called.

There was the day when Max, 4, picked up a spoon for the first time and fed himself chocolate pudding (what a glorious mess). And the day when Max, 5, spotted the car waiting outside our home to take us to the airport and Disney World, and before we could stop him he flew down the stairs by himself – something just as memorable as our trip. And the other day, when I called home while I was away and Max was getting ready for bed; the babysitter put him on the phone and said, “Tell Mommy you’re getting dressed” and he said, clear as anything, “Getting dressed.”

Two clearly-spoken words: Now that’s something to celebrate.

Photo by Yasmeen Anderson.

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