24 Weeks Post-Rhizotomy

It is hard to believee that it has been 24 weeks since Nina had her SDR surgery. I have not done a very good job at keeping updates on how Nina is doing. I am not the type of person that notices gradual process and I think that makes it hard for me to be objective about the changes in Nina. My initial thought is that things are the same, and that Nina has not made much progress. But that is not true.

A rhizotomy does not only help with walking and gross motor skills. Nina's fine motor skills are actually very good. The only thing she really struggles with are letters. She cannot get letters. Even when tracing letters she has a hard time. She can color and cut, she can draw a picture of a person, and her overall fine motor skills are almost the same as most 5 year olds. Pretty incredible.

We spend a lot of time focusing on walking. A couple of times we thought we had finally turned the corner and we were on the road to walking independently. There have been 2 different times where Nina has walked around the house. On her own. No walker. No help. At school, she uses her wheelchair and her walker. The teacher mentioned that she is beginning to cruise a little and taking small steps on her own.

There are times when it is hard not to get frustrated and wonder if she really wants to walk. We are not sure what it is that will give her the final push so she takes off. But as Andy and I were talking the other day, we realized that Nina is walking. She is actually walking independently, but she has no idea. She thinks we are actually helping her. The last few weeks Andy and I have been holding the back of her shirt with a reassuring "I got you." And she walks. On her own. For as long as she feels us right behind her and feels we are touching her shirt, she can do it. The thing is, we are not doing anything at all, just walking right behind her. If we let go, she feels it and immediately falls and looses her balance. At this point it is not weather Nina will walk or not. She can walk. She is walking! This is a battle of her mind, of believing she can do it. This, I realize, might take a little longer. Yet, we are encouraged, because this girl can walk. She is actually walking!

Nina continues to walk on her toes out of habit. When she uses the walker we remind her of that several times and she gets those heels down no problem, even without her braces on. I am not sure if this is just Nina or if it is common after a SDR.

In a month we go back to Mayo clinic for Nina's 6 month follow up. We are interested to hear what the doctors have to say when they see her again and what their future recommendations will be.

I leave you with a video of Nina walking this afternoon. With Andy holding her shirt. It is not the best quality video but you will see what she does on her own.



Don't forget to enter your name for a book giveaway "A Good and Perfect Gift" by Amy Julia Becker. Just click here and go to that post.

And tomorrow starts Down syndrome awareness month, I am excited! Stick around as I share our journey with Down syndrome for the last 4 years!

Under the 'hero's' cape






















Two days ago Jennifer Johannesen brought me a copy of her book. It was a shiny paperback called No Ordinary Boy, about her life with son Owen, who had multiple disabilities and died almost a year ago at age 12.

Today, my copy's cover springs open, the pages are dog-eared and there are traces of food and bath water dispersed throughout.

No Ordinary Boy explores themes that will resonate with parents of children with severe disabilities and educate professionals and those who have never lived this reality.

It will enable readers to understand how parents can experience their child as magical, yet struggle with a crushing hopelessness when years of rehab efforts don't yield results and therapists (and a 'you can do it!' culture) don't let up.

"What if I know we'll never get there," she writes of efforts to find a communication system that works for Owen. "What if I'm certain? Who would I dare tell? Who would listen? And who would dare agree? Are we all supposed to die trying? And why do we always have to be working on something? Is 'hope' the only thing that matters?"

We hear about the herculean efforts Jennifer goes to to feed Owen, who is at risk of aspiration, orally: "Food and thickened fluid had to be given slowly and methodically. At the last assessment before I finally threw in the towel, the instruction was to feed 1/4 teaspoon of food every 30 seconds. I calculated how long it would take to feed Owen his recommended calories and fluids: about five hours a day."

Elaborate, drawn-out feeding sessions rule the day, to the point that Jennifer's younger toddler Angus protests when he sees the equipment come out. "...at that moment, I felt helpless," she writes. "And hopeless. I was frustrated that I couldn't provide for either of my children properly."

There are years of relentless attemps to get Owen -- who is profoundly deaf, unable to use his hands and struggles with uncontrolled movement -- to express himself.

"The discussions always went around and around. I was offered options at every turn but they felt futile. I knew what I was up against. Every year, a new suggestion, a new hope.

When Owen was three: "He can use a voice-output device to communicate."

But he can't hear.

When Owen was four: "He needs to first learn cause-and-effect; learn how to use switches."

Yes, learn. Goals, checklists, spreadsheets, Time of Day/Number of Opportunities/Number of Successes. The expensive adapted toys. The battery-interrupter to adapt regular toys. The computer arranged through the Assistive Devices Program specifically for Owen's training...We tried. We really did.

When Owen was five: "It's okay if he can't hear. He just needs to know that if he pushes the button, someone will respond."

But his caregivers can't hear. I hire only deaf people. They're the only ones who sign well enough. They're the only ones who can offer consistent language input.

When Owen was six: "Then we'll attach a light signal to the switch, so they can see when he wants something."

But Owen can't see it. His head is always craned around, his chair always tilted back.

When Owen was seven. "Then we'll attach a buzzer, so he can feel when he's pushed the button."

It was enough to drive a sane woman mad.

One of the most moving and insightful parts of the book -- to me -- is a letter Jennifer writes to a trusted speech therapist, explaining why she's given up on augmentative communication. "My apparent abandonment of AAC has nothing to do with my acceptance of Owen himself -- it's more about my exhaustion and what I'm seeing as futility," she says. "I do wish he could communicate and I wish I could give that to him -- but at what cost?"

Jennifer connects the goal-setting of rehab professionals to a workplace phenomenon called Fake Work. "Fake, because it creates the illusion of productivity when the activities actually don't contribute to the production of anything real or meaningful....Institutions and therapists like disabled kids and their families to be working on stuff, to be improving, to have goals and accomplishments. To be all they can be! This persistent striving can create an environment where Fake Work is prevalent and even encouraged."

It's painful -- and somewhat humorous -- to read the lengths to which this parent goes to have her son participate (I'm sure our readers will relate). At one of Owen's birthdays, Jennifer hooks up a hairdryer to a switch box so he can 'blow' out his candles by hitting the switch with his foot. Only things don't go as planned!

There are so many places in this book where I said: "Yes. She gets it. She had the same feelings, the same thoughts."

An example is when she visits a segregated school for Owen, the only schooling option she's given.  "I can't describe exactly what was wrong or why throughout the whole tour I was holding back tears" she writes. "...Beyond the buzz, I sensed an environment devoid of connection, authenticity and learning. The place looked like a school but it didn't feel like one; it felt like a facility in which employees looked after disabled kids, more institutional and soulless than any other place Owen and I had been."

And although I've known Jennifer for at least eight years, I wondered: "Why didn't I know?"

To therapists (and I assume even other parents, like me) "I would always wear my shining-hero cape," she writes.

We get the sense that putting on this front of supermom who 'has it all together' is expected of us -- by professionals, family, friends. Certainly we, as parents, don't want people to interpret our lives as tragic. "There's nowhere to go with the reality of hopelessness," Jennifer told me this morning.

Jennifer covers all the bases in her book. She talks about the impact of a child's disability on marriage.

We hear about how she spent her nights ensuring Owen had the continual pressure his body needed to calm itself. "I found a way to keep him tucked into a ball without having to sit up: spooning." This allowed Owen some sleep, but not his mother, who was occupied in a psueudo-game of Twister that left her with chronic pain.

There are surgeries, a baclofen pump implanted to reduce spasticity that's recalled, a meeting with Holland Bloorview's bioethicist about decision-making for someone so vulnerable and dependent.

When Jennifer and her husband choose not to pursue deep-brain stimulation, which is held out as a way of calming Owen's uncontrolled movements, Jennifer feels a sense of exhiliration. "There was nothing left to hold out for, no more straws at which to grasp, no more hope for improvement, no theories to explore, no further experiments, no more trials. Finally, Owen was free to just be."

At the end of the day No Ordinary Boy is a love story --- to Owen, and to brother Angus, to whom the book is dedicated, and to all of us families out here struggling to run what feels like a parenting marathon.

It is candid, thoughtful, philosophical, important. Jennifer weaves her narrative around excerpts from hospital and rehab reports that juxtapose Owen's 'clinical' picture with that of his mother's lens.

You can buy No Ordinary Boy at http://noordinaryboy.com/buy/ or borrow it from Holland Bloorview's library (416-425-6220, ext. 3713).

GIVEAWAY and Book Review: A Good and Perfect Gift by Amy Julia Becker

After 3 days in the hospital, I was discharged to go home with my baby girl who had been diagnosed with Down syndrome. Any parent who has received a diagnosis understands how hard it is to deal with it at the beginning. There is a lot of grief and fear when you know so little about what the diagnosis will mean to your family and your child. On the way home from the hospital, we stopped at a Christian bookstore. I asked one of the clerks for their special needs section, which they did not have. I then asked for a book on special needs or Down syndrome, which they did not have either. Among their hundreds of books there was nothing that would help me deal with my baby’s diagnosis or that could give me hope and understanding. Thankfully, I was able to find the book "Gifts" at Barnes N Noble, which till this day continues to be my favorite book written by parents for parents, about Down syndrome.


A Good and Perfect Gift by Amy Julia Becker is the book I had hoped to find 4 years ago.

Written from a Christian perspective, Becker invites us to journey with her as she wrestles with her daughter’s diagnosis with Down syndrome. She shares the lessons learned and the ways in which God changed her perspective and rearranged her priorities. It is a beautiful, open, honest memoir of her experience dealing with her child’s diagnosis. Like the subtitle of the book says, it is about faith, expectations, and a little girl named Penny.

As a mother of a child with Down syndrome, and as a Christian, I was able to relate and appreciate Becker’s journey. I still find it incredible that somehow, with all of us being so different from one another; our children with Down syndrome teach us similar lessons.

The book is divided in 3 parts. The first 2 parts were my favorite “This Child” and, “Whoever Receives This Child, Receives Me”. Her last section “Just Penny” seemed to focus on her daughter and all that she is able to do. As much as I loved the first 2 parts, I wrestled with her last section. Penny seems to be a very “high functioning” child. So much indeed, that I had trouble “seeing” that she has Down syndrome. In fact, Penny seems to be “normal.” Penny’s speech, communication, and behavior at age 2 were outstanding, which made it hard for me to relate to her since my 4 year old is not there yet. And I felt guilty. Guilty that maybe I was not doing enough for my daughter. It made me wonder if her portrayal of Penny was accurate. It is other parents with kids with Down syndrome that will be drawn to her book, and I wonder if others will feel the same. Maybe not, maybe, Amy Julia’s book has simply challenged the insecurities I feel as Nichole’s mom

Overall, I liked her book. I appreciated her story. (I have edited this post)

Here you can download and read the first chapter of the book.

So, if you would like to get a copy of “A Good and Perfect Gift” by Amy Julia Becker, leave a comment! On Sunday (Nichole’s birthday) she will draw a name and Bethany House will send you a copy of the book!

And the winner is...

Education: Is it 'earned' or a right?

On Monday I heard a fascinating CBC interview with Chris Mburu (left), a lawyer with the United Nations Human Rights Agency.

Chris is the focus of a documentary film -- A Small Act -- about how a $15-a-month sponsorship from Swedish teacher Hilde Back enabled him -- a young Kenyan living in a mud house -- to go to school and eventually Harvard. Chris decides to find the stranger who changed his life and creates a scholarship program in her name: The Hilde Back Education Fund. The fund provides scholarships to the brightest students from poor communities in Kenya. A Small Act follows top students in Mukubu Primary School competing for a scholarship.

It's a story about how one small act of generosity can have a ripple effect, changing lives. In the CBC interview, Chris talks about how he calls on scholarship recipients to go back to their communities and 'lift them up' with their own charitable projects.

But as I was listening to this fascinating story, I couldn't help wondering why only the brightest students in poor communities were candidates for scholarships.

The fund says it promotes access to education as a fundamental human right. But apparently that right hinges on intellect -- which many would argue is something a person is born with.

If the fund aims to focus on those who are disadvantaged, why does it only recognize and reward the most exceptional, the students who are most advantaged academically to begin with?

Such a thought would never have entered my mind before I had a son with an intellectual disability. The brightest students 'deserve' to be rewarded with scholarships, I would have thought. But now I wonder how much of being smart is genetic and 'gifted' to someone at birth? Is it true that the most brilliant students are the ones who work the hardest, and have somehow 'earned' their intelligence?

I wonder about the Kenyan students who struggle to learn, despite best efforts?

What about those who have intellectual disabilities? I haven't seen the movie, but I imagine they aren't educated in the same classes as the ones vying for scholarships.

When the scholarship students return to their communities to "lift them up" -- will it just be elite students who benefit? At what point will access to good education be for every Kenyan and every Canadian -- regardless of IQ?

Remembering Her

A year ago today, I lost my grandmother.
Her life was beautiful.
I want to share with you the post I wrote the day she met with Jesus.

I Wish You Would Have Met Her

I watch intently as my grandma sits on her vanity bench, carefully applying her makeup. She puckers up as she puts her lipstick on and it makes me giggle. With one hand she gently touches up her hair while she bats her eyes at the mirror. She is beautiful, and I am mesmerized by her. She looks at me and asks if I want some blush for my cheeks. I nod and cuddle close to her while she applies the pink color to my face. I smile and gaze into her hazel eyes.


My grandma and I sing together in the car. We have our own special and favorite songs. She is the only one that never criticizes my singing. I feel so free, so accomplished. I love our car rides together.

Once, my grandmother gets pulled over. The officer approaches the car and my grandmother bats her beautiful eyes at the young officer. He shakes his head with a smile and tells her to “be careful.” He too, has fallen to her charm. I understand, for I am under the same spell and will do anything for her.

My grandmother sings on the stage at one of her recitals. She wears a long, velvety, maroon dress. A grand piano in the background and a full house of spectators, all gathered to hear her sing. She invites me up on stage and I hold on to her leg. I am so proud of her. And she is mine, my grandma.

We sit on her bed, playing “kitchen.” I think she has just as much fun as I do. I forget that she has a weak heart, and that she needs rest. We laugh together, and I offer to put on a play for her. I perform and she claps for me, she tells me it was the best act she has ever seen.

Sitting on a kitchen stool I watch as my grandma separates the yoke from the white. One smooth motion as she cracks the egg and separates its contents. She pours the yoke into a small china cup and dumps a couple of teaspoons of sugar and hands it to me. I enjoy the sweet treat while she continues to bake. Later, we make flour tortillas together. We like to spread butter and sprinkle sugar on them. It is our weekend tradition.

My parents say I am being disobedient. She asks, “Ellen, won’t you do that for me?” I do, I do in a light year second, no questions asks.

I grow up, and find that I cannot stop talking to my grandma about life. I want to know what she thinks, I want her advice. She listens, she asks questions, and then I lay down with her as we watch a Mexican soap. She needs some rest, but her presence is peaceful, comfortable, and familiar. She has always been there for me.

She greets my husband with a hug and a kiss. She tells him “Pero que guapo eres mi chulo!” forgetting Andy understands some Spanish and loving that she calls him handsome. She says she is proud of me, of how I have lived my life. I want her to be proud.

I see her sitting on a chair looking outside her window, watching as birds fly by. A rosary in her hands and her lips moving. I know she woke up early and has been praying for her family, for me, my husband, my girls. She has always prayed.

Today she has closed her eyes for the last time. She celebrated her homecoming in Heaven, the life of the party. I imagine her hazel eyes sparkled as she met Jesus. Her heart, always weak, has now been restored.

But I miss her. Oh how I miss her. I wish you would have met her; you too, would have fallen to her charm.

Dreaming Of Playgrounds

I love our school and our love the teachers. They have gone above and beyond to help Nina be as independent as possible. But there is one thing I do not like about our school. The playground.

Nina gets out there with her wheelchair, transfers to her walker and she is off...

Off to watch the kids playing. Climbing. Sliding. Running. She is watching. She gets to play with the rocks around the play structures. Dump trucks, shovels. Maybe a kid will play with her. Kids like her, they really look after Nina.

Ellie and Nina have recces together. Today I asked Ellie if Nina has fun. Ellie said Nina has friends that  play with her, but Nina cannot do anything because the play structures are just not...accessible. At all. Little rocks make it hard for a wheelchair or walker to get through, and no ramps make it impossible for Nina to have any independence. Out there, at school, she is completely dependent in other people. Either to stop and play with her, or to pick her up to help her go down a slide.

Twice a day, in the playground, Nina is disabled. It is a constant reminder that she is not like other kids. She watches, on the sidelines, or from the rocky ground.

Something needs to change.

Nina is not the only kid in her school with mobility issues. She is not the only child with special needs.

So I have been dreaming. I have been dreaming of  "Boundless Playgrounds." With ground where a wheelchair or walker can access the structure. Where there are ramps! Where there are railings! Where a kid with Down syndrome, Cerebral Palsy, Spina Bifida, Autism, and other special needs can feel just like one of the other kids. Where there is no divide between those that have challenges and their peers.

And I am determined.

You see, schoosl don't have a lot of money, so a playground is not at the top of the list. This is one of those situations where the parents need to step up, raise funds, and make things happen.

This is completely new territory for me!

And maybe you can help me sort things through.

Have you done this before? Have you raised money for a play structure in your school? Do you have connections? Do you know of places where you can apply for a grant? Dream with me!

I am really excited about this.

I am dreaming of playgrounds. Of Nina walking up a ramp right along with her friends. Going down slides. Her being independent! Twice a day... a time to look forward to being outside and being a kid! Yeah!

Let the brainstorming begin!

School update
















Ben continues to enjoy his school. His assistant was away yesterday, so one of ours went in. This is what she had to say:

It was great to see him parade though the high school crowd with a smile on his face and see how proud he was in his body language. I think there is some further adapting that needs to happen for participation in all classes, but I know he is being challenged and enjoys where he is. He enjoys being challenged, independent and participating in class.

And from the principal: It has been quite remarkable to see how Ben has adjusted.

'Perfect' or 'abnormal:' Which one is your baby?
















'Perfect' or 'abnormal:' Which one is your baby?
By Louise Kinross

It all began so simply.

I was a couple of months pregnant with my first child. My obstetrician asked if I wanted maternal serum screening. I knew this blood test (called alpha-fetoprotein or AFP for short) detected risk for Down syndrome in a fetus. I also knew it was known for false-positives.

I had never seriously thought about prenatal genetic testing. "Can you ask me again so I can think about it?" I said.

A couple of weeks later I went for routine blood tests and was surprised to see the AFP ticked off on the requisition.

Why hadn't the doctor asked me if I wanted this test?

I was angry.

But I was a healthy 30-year-old woman and I was here at the lab giving blood anyway. What could it hurt?

Two weeks went by and my sister-in-law—a physician—reassured me that if there was a problem I would have heard by now.

The next day I picked up a voice mail from my doctor: “You have an increased risk of having a Down syndrome baby and need to get down to the hospital tomorrow for counselling."

My heart sped up. Was something wrong with my baby?

D'Arcy and I went to the hospital clinic. The genetics counsellor looked fresh out of college, with a large textbook open on her desk. She said I had an elevated level of AFP which gave me a 1 in 200 chance of having a child with Down syndrome, instead of the regular odds of 1 in 400 for a woman my age.

The numbers meant nothing to me.

I could have an amniocentesis to confirm or rule out the diagnosis, the counsellor said—but the procedure came with a 1 in 200 risk of miscarrying the baby.

I had the same odds of having a baby with Down syndrome as losing the baby from the amnio test! I didn't want to lose this baby, which was already moving inside me.

The “counsellor” part of genetics counsellor proved a misnomer. There was no discussion about our values, what parenting meant to us, or how we felt about screening for and aborting a fetus with genetic disabilities. Other than a recounting of the dry statistics, there was no discussion at all.

If I wanted the amnio, I had to have it the next day, the counsellor said; I was at the tail end of when they conducted terminations.

D'Arcy and I wanted this baby.

How would I make a decision? I couldn't make a decision, I told the counsellor.

She gave us two pamphlets. One had a scant, two-paragraph description of Down syndrome on it. It described the condition in stark medical terms, listing one "defect" after another. It ended with an odd sentence about how Down syndrome babies could also be happy and lovable—as if clarification was needed that these children were, in fact, human.

The other—a pink brochure—was about termination. What exactly was it? It was a “mini-labour,” the pamphlet said, making it sound as inconsequential as a manicure. Nowhere on the pamphlet did it describe termination as abortion, and nowhere did it state the method at 16 weeks.

I didn't know it at the time, but there's nothing “mini” about a termination of a four-month-old fetus. The fetus' heartbeat is stopped by injection, regular labour is induced and can go on for hours, and a fully-formed, dead fetus is delivered (parents often have hand and footprints taken as a memento).

When I couldn't make a decision about whether to have the amnio test, the genetics counsellor suggested I speak to an obstetrician who would counsel me.

“Look,” said the grey-haired man in a white coat. “If you have an (amnio-induced) miscarriage you'll be depressed, but then you'll get pregnant again and have a normal baby. But,” he began to squawk, eyes popping and mouth twisting, “if you have a Down syndrome baby, that'll be a burden you live with for the rest of your life!”

I cowered in my chair like a child.

We left the hospital in a vacuum filled by the two-paragraph medical description of Down syndrome, the obstetrician's tirade, and the knowledge that the deadline for the amnio loomed the next day.

I didn't search out more information when we got home. I was full of moral angst and indecision but it didn't seem to be the kind of thing you talked about. Oddly, I didn't jump on the computer and research everything there was to know about Down syndrome.

I had little firsthand experience with disability to draw on. Kids with intellectual disabilities didn't go to neighbourhood schools when I grew up. I remembered Bobby, the oldest of six children in a family that lived on a street behind our house. Bobby had Down syndrome and was dropped off in a station wagon from a sheltered workshop in the afternoon. He always ran, head down, into the house. Even as a child, I sensed that his dropped head signalled something bad, something sad or shameful.

I had been brought up with a sense of the value of all human life and with a wariness of medical intervention.

However, it appeared that this was an outdated way of thinking. My therapist told me she would abort if she was carrying a child with Down syndrome. “Life is hard enough when you have your wits about you,” she said.

Of course at this point I hoped it was all a mistake and I would never be faced with making a decision.

I had the test, not having a clue what I would do if it came back positive.

For the next week, I was gripped with anxiety. I would sit, holding my belly, knowing that at a gut level, the idea of aborting a child with a genetic flaw wasn't compatible with my values. It didn't feel right. Every fibre of my body was opposed to judging the life inside of me as unacceptable and needing to be expelled. If I couldn't accept this baby—a part of me, and entrusted to my protection—how could I accept myself?

But the doctor's voice echoed in my mind: the responsible thing to do was to abort this "burden." I pictured myself walking into the hospital, suitcase in hand, emotions shut down.

My husband D'Arcy said he would support whatever I decided, but mainly he chose to believe that everything would come back fine.

And it did.

We were elated to receive a phone call that the amnio result was in and it was “normal.”

I didn't realize that the amnio, at the time, only tested for a certain number of major genetic conditions. Because the limits of the test hadn't been explained to me, I interpreted the result of normal—which also wasn't explained to me—to mean that my child was normal (whatever that means!). With the full information that the amnio doesn't test for a host of rare genetic conditions, I don't know if I would have taken it.

Having received a clean bill of health from the gold standard of prenatal testing, it was a surprise when we were told shortly after Ben's birth that he had a constellation of symptoms that indicated a chromosome problem.

"But I had a normal amnio?" I questioned. 'How could that be?"

I soon learned that I wasn't the only one with the perception that amniocentesis was infallible. Professionals and lay folk alike were befuddled that I could have both a normal amnio and a child with a genetic condition.

D'Arcy and I had always planned on having at least three children, and we wanted them to be close in age.

When Ben was about seven months old, I began thinking about when I would try to get pregnant again—in the new year, I thought, when Ben was about a year old.

I went to see my family doctor and was surprised when she tried to talk me out of getting pregnant again so soon. I interpreted her response as a negative reflection on Ben: why would we want to take on another child when we already had our hands full with a child with a genetic diagnosis?

That got my back up.

I didn't want Ben's condition to put limits on our dreams. I didn't want to make having another child "conditional” on Ben's progress. That wouldn't be fair to him or to us.

But the thought of pregnancy was now filled with anxiety and trepidation: Would our second child be born with medical problems or disabilities? What if our second child had Langer-Giedion Syndrome?

We were told the likelihood was less than 1 per cent because Ben's genetic deletion was random or spontaneous and not related to a change D'Arcy and I carried. In fact, shortly after Ben's disorder was diagnosed, a genetics counsellor enthused: “You have every chance of having a perfect baby—next time!”

But numbers meant nothing to us.

One day while I was agonizing over this, D'Arcy turned to me and said: "Louise, I love Ben. If we were to have another Ben, I would be ecstatic."

That was a turning point.

I became pregnant again when Ben was 18 months old, at age 31. Amnio wasn't available to moms of my age, but because we already had one child with a genetic condition, it was offered.

To say I was conflicted was an understatement.

The first time around it plagued my pregnancy with fear. Now, as the mother of a dearly loved child with a genetic condition, I couldn't imagine aborting a child with a similar condition. What would that say about the value I placed on my son Ben's life? How would I ever look at Ben again, knowing I had stopped the heartbeat of another fetus like him—because it didn't "measure up."

On the other hand, the fact that we were being offered the testing seemed to imply it was the medically appropriate or responsible thing to do. And an unfortunate corollary of that, which soon entered my mind, was that if we didn't have the testing, people would think we had 'chosen' to have a child with a disability—or that we had somehow caused the disability or failed to prevent it (even though prevention in this case meant eliminating the child): “They already have one child with disabilities. How could they have another?”

It seemed guilt would be my companion, no matter which course of action I took.

As I wrestled with whether to have the test or not, I also tried to predict what it would be like to have two children with disabilities (I've since learned that we're bad at predicting our ability to cope with a situation).

I sobbed to a friend that I didn't think I could handle the emotions of having two children with disabilities -- which I pictured as the grief, fear and anxiety associated with Ben—times 2.

But I believe it was more that I didn't think I could handle the stigma—the self-consciousness of feeling that others were looking at my kids and judging them as less than whole.

One of the greatest sorrows we experienced with Ben was others not delighting in him the way we did. A joy of parenting is seeing your child bring happiness to others: it's painful when people focus on the disability instead and feel sorry for you.

Ironically, the obstetrician who made his bias to terminate clear when I had an amnio with Ben, was the same obstetrician I was sent to for prenatal counselling with my second pregnancy.

When I appeared at his door, he looked up from my chart with annoyance and said: "Why are you here? We don't offer amniocentesis to women at age 31."

His entire demeanor softened, however, when I told him I already had a child with a genetic condition.

He paged through my chart to find the letter from my genetics counsellor outlining Ben's genetic condition and its symptoms.

Suddenly, he understood completely, he said "why you would want to do everything in your power to prevent having another abnormal baby."

We were back in the black and white land of perfect and imperfect babies, normal and abnormal babies.

The obstetrician emphatically supported my having an amniocentesis and I went along with him. I was young and lacked the confidence to do what I felt was right—regardless of what others thought.

The day of the test, I was an emotional wreck. Everything inside of me was screaming "no, no, no"— don’t touch my baby. But my fear of judgment should I not test and give birth to a child with disabilities was greater.

My first amnio with Ben had been painless. When the doctor inserted the long needle into my lower abdomen with Lucy, I felt acute, shooting pain and I struggled to lie still. How had inserting a needle into a pregnant women's stomach while you watched the baby on ultrasound—praying it wouldn’t get hit—become a normal part of pregnancy? It was so unnatural, so foreign. I felt victimized.

Prenatal testing has transformed pregnancy from a time of joy and hope to one of dread. Will your baby pass the test? The focus is on weeding out and eliminating 'wrongful' life. It's based on a belief in the power of technology to eradicate human pain—that life can be emotionally and physically pain-free if we get rid of certain health and disabling conditions. But getting rid of them doesn't mean preventing them, it means eliminating the children who carry them. And can a 'good life' be defined by health and intellect alone?

When Lucy's amnio came back “normal,” we were somewhat relieved, but it didn't quell our anxiety. We had had a normal amnio with Ben. Near the end of the pregnancy, the obstetrician said Lucy wasn't growing properly—she was smaller than expected for her age. I had to go for special high-tech ultrasounds every couple of days at the hospital. I began to fear that like Ben, Lucy had a growth problem. “Could it be a genetic condition,” I asked the obstetrician?

“No,” he said. “You had a normal amnio.”

“Exactly,” I said, reminding him that an amnio didn't detect the genetic deletion in my son.

Photo above is of Ben's feet at three days old. The geneticist thought they were unusually wrinkly and a photo of his feetand his characteristic facial featureswere ordered. Those are D'Arcy's hands holding his feet, and it makes me smile to remember that Ben had already stolen our hearts.

Visit a new parenting resource online!





For the last year I've been seconded to Holland Bloorview's Family Resource Centre to help better integrate BLOOM resources with child disability information in the resource centre.

Holland Bloorview's new online Family Resource Centre brings together parent and professional advice, community resources, Holland Bloorview programs and BLOOM stories organized by topic.

Visit the Family Resource Centre and click on any of these topics under the blue Resource Centre tab at the left:

Parenting

Fun

Growing up

Respite

School

In hospital 

Money

My child has

'My child has...' includes stories and resources about a variety of specific disabilities.

In coming months we plan to set up a parent discussion board where you can share firsthand information and support.

For those who live in the Toronto area, don't forget to drop by the Family Resource Centre on the main floor of Holland Bloorview!

From Monday to Friday, our family support specialists, social worker and parent mentors share resources on a range of child disability topics and Holland Bloorview programs. Just around the corner is the Ronald McDonald playroom, where children aged 2 1/2 and up can have supervised fun while you gather information.

We are hosting an open house on Wednesday November 16 from 3 p.m. to 7 p.m. Meet our parent mentors, family support specialists and library staff and learn about funding, fun and respite resources. For more information or to register, message ndyke@hollandbloorview.ca.

If you can't make it to the hospital, Ontario families are encouraged to phone our Warmline with questions at 416-424-3888.

The Family Resource Centre works with families to educate, empower and connect parents.

Parents and staff participated in a working group to develop the online resource centre and Lisa Callahan, our resident website wizard, brought it all to life.

This is the first phase of our online resource centre and we hope to develop the section based on your feedback. So please -- go in, click on the topics and send me your input (lkinross@hollandbloorview.ca) or post it below!

Could I Do More?

There are times when I think about my children and I begin to ask myself, “Could I do more?”


This question seems to be more frequent when it comes to Nina and Nichole, since they have more challenges than typical children do.

With Nina, I find myself asking that question when it comes to her physical development. Should I stretch her more? Should we do more strength building exercises? Should we practice walking more often? Could I do more?

Yet, for the last 2 weeks, I feel this question keeps coming up when I think about Nichole. Could I do more?

I recently read a memoir about having a child with Down syndrome. (I will be writing a review soon, so stay tuned for that because I will also have a giveaway) I believe this is when this question began nagging at me, especially in the area of speech. Nichole’s greatest challenge is speech. We have communication going but speech has been slow…and hard. It does not help that Nichole is very shy and will not talk to anyone she does not know well. This basically means she only talks to her family.

At school, Nichole has taken her time to feel comfortable enough to talk to her teachers. She did not talk for quite a while. One of the teachers is fluent in sign language (2 members of her family are deaf, so she can sign as well as she talks), and they quickly realized that Nichole was responding better that way. Last Friday I was blown away when the teacher talked to Nichole and Nichole responded back to her with signs. Not just a sign here or there like we do at home, but I mean she actually said a sentence with sign language. Should I have pushed myself to learn sign language in order to give her better communication? Could I do more?

I also fall in the trap of comparing. As Down syndrome awareness month approaches, I am reading about children Nichole’s age and all they are able to do. How well they speak, how well they enunciate words, how well they sight read, how well they count. Could I do more?

Yet Nichole is Nichole. Her love for life makes us stare at her in wonder, with goofy grins plastered on our faces. She is great! How we love this child and how she has changed us!

The thing is, Nichole will speak. Sure, it will take her longer, but she will speak. Nichole will count, she will write, she will read, and she will excel in the areas where she is talented. We love her, and we are proud of her. So proud of her.

Could I do more? I am sure I could do more for all  my girls, but for now, I know I do what I can. And that is good enough.

Inclusion: One teacher's experiment















Sheila Dobson (above with son Ben) teaches a class for students with developmental disabilities at Sutton District High School in Ontario. She and colleague Andy Hagerman designed a three-week unit called Inclusive Recreation to bring together four classes for students with disabilities with a regular Grade 11/12 Recreational Leadership class. She shared the challenges and rewards of her first experience with inclusion in this piece from the summer issue of BLOOM. Sheila came to visit me a few months ago and she is the kind of teacher every parent would hope for. Thanks Sheila! Louise

Inclusion: One teacher's experiment
By Sheila Dobson

I started teaching special education two years ago, after being a guidance counsellor for most of my career. I knew very little about inclusion, other than being the parent of a child with autism and the joy and heartache that seem to be part of that territory.

I was looking for ways for my students to get to know students in the mainstream and for the mainstream to get to know my students. It’s not that anyone is unkind to my students, but there’s a barrier: it’s like being on different sides of the glass and not being able to communicate. I was searching for a way to make the glass disappear; for our kids to know each other as peers.

Andy and I designed the unit on Inclusive Recreation with ordinary high school kids in mind. The Grade 11/12 class we partnered with is not remarkable. They’re not gifted or elite athletes. They’re just ordinary kids texting at the back of the class and wondering what they’re doing on the weekend. When we began the unit we talked first about the necessity for honesty—that if they couldn’t ask me the questions they were thinking, or if they felt constrained by using correct language or being ‘nice,’ we probably wouldn’t get far.

We did some exercises to help them identify how they felt about disability and inclusion. I asked what words came to mind when they thought of a person with a disability. They wrote about being sad and afraid. They talked about the randomness of a person’s movements, verbalizations that were unclear and a general lack of understanding. This allowed us to have the honest discussions we needed to have before the students could begin interacting together.

We used a few articles from BLOOM to create some context for them, and we had some discussion about the ‘why’ of inclusion, with the emphasis on everybody benefitting. We did a disability simulation where they had a chance to use wheelchairs or experience certain types of disability, such as navigating the school wearing a blindfold.

Then we plunged them, without warning, into an inclusive situation. We paired them up with our community class students, and we played co-operative games. It was a roaring success. My favourite was amoeba tag. I don’t think I’ll ever forget the sight of one of my students dragging his mainstream partner (who was madly trying to hold up his low-slung jeans) around the gym floor.

In guard tag, teams of six kids of all abilities guard a wheelchair from the person who’s ‘it.’ The object is for ‘it’ to try to tag the student in the wheelchair by reaching through the circle of kids who have linked arms around him or her. It was exciting and everyone enjoyed it. More importantly, it gave the mainstream kids a sense of who we are and allowed them to connect in a powerful ‘us’ as opposed to ‘them’ way. We talked about how we structured the games so that everyone can participate and is safe.

Then each mainstream student was paired with one of my students to design an inclusive recreation experience. They learned about principles of inclusive recreation and the board’s safety guidelines. They came up with a number of activities like basketball, badminton, dancing, cooking and going for a walk together. Finally, they organized and hosted an adapted floor hockey tournament for students with disabilities from our whole board. Our final activity will be a slide-show and evaluation of the experience to help us refine the unit for next year.

The number one benefit I’ve seen for my students is that their world is bigger. Now when we’re walking in the halls, mainstream kids will say “Hi.” They know each other and they connect with each other. For the mainstream students, it was a chance to talk honestly about ability in a general sense: “What is able? What does it mean to be disabled or differently-abled?” I saw their perceptions change so much.

The biggest challenge we had was to help the mainstream students overcome their fear and lack of exposure. Given the chance, our students can and will be inclusive. They want to rise to any challenge. They just need to know how. The cooperative games—where the emphasis was on working together—were awesome. In this unit we were able to create authentic opportunities and scaffold the learning so that everyone was safe and successful.

If I had to offer advice to other teachers, it would be to keep the experiences short—20 to 25 minutes—and to give the students enough time to process and talk about their experiences. Our mainstream students did some cartooning to express how they felt about the disability simulation. Some of my students wrote a letter to their recreation partner to share what they enjoyed.

Overall, it was a great beginning. I’m passionate about making the world bigger for all of our students.

Resource

Essential best practices for inclusive schools

It's Almost Time

October is fast approaching, which means it is almost time for Down syndrome awareness month. It will be the 5th annual "31 for 21 blog challenge." Bloggers are encouraged to blog every day for the month of October about Down syndrome.

I am not sure that I can commit to blogging every day. There are many bloggers who will be taking up this challenge, so the message will be shared. However, I do want to take the opportunity to share more about life with Down syndrome.

A few years ago my friend Gillian used the month of October to share her personal story. I loved her posts and reading about her journey. So this year I will be following Gillian's footsteps and writing about our journey with Down syndrome, starting with the pregnancy. We will see how that goes!

But like in years past, I invite any questions you have about down syndrome and I will answer those in a blog post. You can ask anything specific to Down syndrome or about our family as we do life with Down syndrome.

I am excited! Let the October fun begin!

Overheard: Bears and Radio Disney

Camille and I were walking to school and talking about bear week in her class.
Me: You could show your teacher the sign for bear.
(cross arm and open and close your  hands at the shoulders.)
C: (does it) Is this is?
Me: Yes, that's the sign for bear.
C: We do that at church.
Me: Uuuuhhh, no.
C: Yes, we do! We make the sign of the bear!

I was cracking up when I told Adam and he pointed out she is right- they cross their arms when going up for Communion, which looks JUST like the sign for bear!

***
Adam: (listening to RadioDisney) This sounds familiar. Is it Selena Gomez?

I just stared at him... and then laughed. Hard.

Friday wrap-up















It's a wet Friday and I had to pick Ben up at school because he was sick, so he missed the football game (though we did drive by and see the teams lined up wearing all their kit in the pouring rain!)

I wanted to point you to some interesting dialogue on the blogosphere. 

Claire at Life With a Severely Disabled Child wrote a piece about how she doesn't associate her daughter's disabilities with who she is as a person:  

I do not interpret her disabilities as gifts that enhance or make her who she is. Who she is, her identity, is, to me, more about her personality, her little quirks and preferences. Her disabilities, on the other hand, stifle her, stifle who she is. She cannot write for long because it will hurt her arm. She cannot express herself because she can't catch hold of the words. She cannot put together a plan for her life because she is completely dependent on others and can't even think in those terms.

This piece was actually a challenge to Bill at Bad Cripple, and he responded with Identity and Disability, Part II:

...when I see a person with a disability one thought comes to mind—adaptation. How has that person coped and adapted to a physical or cognitive deficit. I do not see limitations but rather a whole set of ways that individual has adapted to his or her circumstances. This is why I am no different from any other person with a disability. We all adapt. When I think of my identity, my disability is a central part of that thought process. However, I do not ever think of myself in relation to bipedal locomotion. I think how can I adapt a given activity to my abilities? If I want to ski I need a sit ski. If I want to kayak I know I need a slightly higher back. I do not think or ever wish I was “normal” so I could kayak or ski like others. Likewise when I see or read about Roy’s daughter I think how does she help her daughter adapt. What is it that she can do? How does she get the most out of her physical body and cognitive ability? Comparing Roy’s daughter to a person with “normal” cognition is as pointless as comparing my wheelchair use to bipedal locomotion. Both Roy’s daughter and myself will come away with the short end of the stick. 

Meanwhile, Heather at The Journey Continues blogs about celebrating the first birthday of son Zack since his death: Finding A Way Through a Year of Firsts:

After the death of a child or even any death in a family, it's hard to ever imagine celebrating anything again. I was the type of mom who loved to decorate for all occasions. I haven't done that since Zack died. I think I've come to realize that those things just aren't as important as they once were. Balloons and banners don't make a holiday special, it is having the ones you love around you, that make the memories of those days. 

Heather goes on to share practical tips on how we can find comfort in remembering the ones we've lost.

And this morning I spoke with Jennifer Johannesen, who many of you know as a BLOOM contributor and mother to the engaging Owen, who died last October.

Jennifer is expecting the first copies of her book No Ordinary Boy, which will be available through Amazon next month. Check out excerpts and stunning photos of Owen in the last year of his life at No Ordinary Boy. And this was a powerful blog Jennifer wrote about the process of writing her book.

Patient Voices on The New York Times has an interesting series of profiles of people talking about living with autism.


Down Syndrome and Abortion

It is estimated that 90-94% of women who receive a prenatal diagnosis of Down syndrome have an abortion.


90-94%

The number is staggering.

But I will not point my finger at the women who have given their babies back to God without ever meeting them. Why? Because I understand. I know how they feel. Although abortion was never an option for us, I still wrestled with the exact same feelings these women had. I cried bitterly wondering why we had been given a “broken” baby. I didn’t want Nichole. Deep inside I wanted her to die. Can you believe that? I wanted my baby to die because I was so scared.

I was so scared.

So scared.

I had more questions than I had answers, and everywhere I looked Down syndrome seemed like a life sentence for my daughter…and for me.

When you are pregnant, and your baby has a possibility of having Down syndrome, doctors respond. Their response is not a welcoming response. They do not offer up to date information, or to connect you with other parents that have children with Down syndrome. They do not even talk about Down syndrome beyond their medical experience. No. What they talk about are more tests. They talk about a “choice,” and they talk about making that choice now! In addition, when they talk about Down syndrome and how it will affect your baby all we hear is a doomed medical condition in which our children will suffer greatly, because so many things could go wrong.

Before I had Nichole, I was ignorant about what Down syndrome meant. All I knew was a stereotype, and the stereotype I knew threatened my family, my unborn baby, and me. Professionals, somehow, seemed to confirm these fears.

Nichole’s birth is stained by the many tears and emotional distress I had over her diagnosis. That small extra chromosome had enough power to knock me down multiple times a day. I believed I was not qualified to be the mother of a child with special needs. I wondered, in my fear, if I would ever be able to love Nichole.

But love her is exactly what I did.

The fear, the questions, and the anxiety were moved to the side. I held a baby in my arms. A round faced, soft skinned, button nosed, bright-eyed face that captivated me. It was as if she had power over my heart. Love, joy, and peace became evident in my life; their aroma filled me with a strength I never knew was in me. She challenged me in the things I held as important, as valuable in life. Nichole transformed me.

Nichole is so much more than her medical diagnosis. She is so much more than any limitations she might have because of Down syndrome. She is an individual, with unique gifts, talents, and abilities. Her life has meaning, it is valuable, and it is hers.

I wish I knew then what I know now.

A sentiment that resonates with most parents of children with Down syndrome.

I wish I knew then what I know now.

Because what, exactly, determines the value of a life? The value of a child, any child?

Should the value of a child’s life be reduced to their academic performance? Then why is the life of a child with Down syndrome held to this standard?

Should the value of a child’s life be reduced to their medical conditions? Then why is the life of a child with Down syndrome held to this standard?

Should the value of a person’s life be reduced to the job they will have? Then why is the value of a person with Down syndrome held to this standard?

What makes our hearts beat? To love and be loved…unconditionally. To celebrate life. To experience joy in everyday moments. To have a heart that overflows with thankfulness. Isn’t this what we all long to experience in life? Wouldn’t the challenges be worth the rewards if we discovered that we had loved to our fullest, that we had been given unconditional love, and that we had celebrated life?

90-94%

Nevertheless, there is that 6-10% that wants you to know something about having a child with Down syndrome.

You will experience shades of color that you never knew were possible. Your heart will expand a thousand times over .Your tears and fears will be replaced with gratitude for the child you have. There will be so much love.

And there are more statistics.

If you want to adopt a child with Down syndrome in the United States there is a waiting list. A long waiting list. For every child in the United States born with Down syndrome that is given up for adoption, there are instances where 300 families have stepped forward wanting to adopt that child!

Each year hundreds of children with Down syndrome are adopted internationally. Hundreds!

Why? Because some families have discovered what it is like to live life every day, every single day with someone who has Down syndrome. And that life is beautiful. That life is rich. That life has been an unexpected gift.

You don’t have to be one of the 90-94%

You can be one of those who discover these precious mysteries in life.

We are living and loving life with Down syndrome.



(Note: Not all medical professionals approach a diagnosis of Down syndrome in a negative way. There are some who offer expectant parents resources and connections before assuming the pregnancy will be terminated)


If you want to know more about our journey and diagnosis with Down syndrome, you can read about Finding Nichole. An article I wrote for Thriving Families magazine where I share about becoming the parent of a child with special needs.

How Did You Find Us?

Once in a while I like to look at the traffic feed for our blog. It is interesting to me how some people end up here reading about our family. I especially find it interesting to see what are the "word searches" that bring people this way.

So these are a few common word searches that I find.

-down syndrome hands
-adopt cerebral palsy child
-down syndrome adoption
-stories about selfishness
-down syndrome statistics
-down syndrome abortion
-storm
-advocate
-stretching cerebral palsy
-spastic diplegia
-funny house
-chickenpox

It makes me wonder how people end up here. How did you find us? How did you stumble across "Stumbo Family Story?"

I am aware most of you reading along might be friends or family, but I am curious, what brought you here?

Good news

Ben has a new supply SNA supporting him at school. I asked him how things were going socially for Ben:

"Socially, the other kids are amazing with him! There are a handful who always say hello, ask for high-fives, and try to get his attention when we walk down the hall. I leave him with the other students from the deaf program in the lunchroom. They have made their own section in the lunchroom and they have always made a welcoming show to Ben when we enter. He sits with them, and I sit at the other end of the lunchroom. I tell him that I'm there, even though he may not see me. Once in a while I will look to see if everything is okay. Each time, he seems to be included with the other students. Having this space away from me gives Ben the opportunity to create his own identity with the other students, and make their own bonds and friendship -- everything that a teenager is all about."

Normal two year old or trouble?

Or a bit of both?

I hate to say it, esp since my kids will likely read this blog one day, but Georgie has gotten mean. Flat out MEAN. I know some of this is normal and I remember Joseph being really agressive around this age but holy smoookes.

Poor Cole seems to be the object of this, erm, affection. Heaven forbid Cole try and play with the trains. I would understand the pushing, shoving and finger shaking (which is hysterical and slightly scary, as he looks and sounds just like my grandmother when he does it!) if Cole were trying to destroy the train set. But no, Cole is normally just trying to link up the trains and push them along the track!

Then there's the "out of the blue" beating up. It was donut Sunday at church and the kids were running around the empty hall. Both Cole's godmother and myself saw Georgie reach out and trip Cole ON PURPOSE. I'm doing all the "comfort the victem" stuff and pointing out how sad Cole is and how he is hurt but Georgie just ignores me.

I'm not sure if this is just because he is two, two going on three (and three is simply two with practice!) or because he knows what he wants but cannot verbalize it. Whatever it is... heeeelp!

Hate crimes: We have to speak up












A number of bloggers wrote recently about the death of Gemma Hayter (above), a 27-year-old British woman with intellectual disability who was tortured and beaten to death last year by five youth she considered 'friends.'

Disability hate crime begins with verbal abuse

Can the word retard kill? This murder might convince you

Seeds at Schulyer's Monster:

Gemma Hayter's case is a stark reminder that the seeds of societal disregard for persons with developmental disabilities ultimately manifest in abuse, in violence and in death and heartbreak and deep sorrow. If you choose to look, to really SEE, you can follow the line from jokes about "retards" in film and television and the stages of comedy clubs to the young people repeating them on the schoolyards, and you can watch those kids grow into young adults and observe them as they live their lives without empathy or compassion for those who have never had value or humanity in their eyes. Small steps, leading inexorably to a moment where killing a living, thinking, feeling human being might be difficult enough to give them pause, but doing harm to a worthless retard, just for laughs? What's wrong with that? How is the world diminished by a loss like that?

I came across this article written a year ago in the Daily Mail by Katharine Quarmby, the first British journalist to investigate disability-related hate crime. Her book Scapegoat: Why We Are Failing Disabled People was just published:

Cast Adrift, The Lonely Victims of Mate Crimes
By Katharine Quarmby

I became aware of a disturbing pattern four years ago when I was news editor of the magazine Disability Now.

During the previous year – 2006 – eight disabled people were robbed, beaten and brutally killed in a period of just six months, yet each death was seen by police, prosecutors and the media as an isolated incident, a motiveless crime against a vulnerable ¬ victim who couldn’t fight back.

I began to investigate such crimes and discovered that the incidents weren’t isolated and the crimes weren’t motiveless – they were committed out of hatred, rather than because the victims were vulnerable.

Fiona Pilkington killed herself and her daughter Francecca Hardwick after years of abuse from bullies.

There are so many cases: Fiona Pilkington, who killed herself and her disabled daughter Francecca after suffering years of verbal and physical abuse from youths; Christine Lakinski, who collapsed near her own front door but was covered in shaving foam and urinated upon as she lay dying; Brent Martin, who was punched and kicked to death by a gang of youths ‘for sport’, in the words of a prosecutor.

My research, which eventually led to a book, Scapegoat: Why We Are Failing Disabled People, suggests that, although this is a problem with ancient roots, failures in the implementation of modern ‘community care’ policy are also to blame.

The lack of money to fund disabled people’s resettlement was one problem; another was the failure to anticipate the bitter backlash that would ensue. For disabled people had been maliciously stereotyped for at least 2,000 years as either scapegoats, sinners or freaks.

By Victorian times, disabled people were so shunned that many, particularly those with mental health conditions and learning difficulties, were imprisoned in asylums or long-stay hospitals. By the mid-Fifties, the number of disabled people who had been institutionalised had reached a peak of 150,000.

These institutions were, almost without exception, awful places where people with learning difficulties were treated with profound inhumanity.

Then a number of well-publicised scandals in the Sixties brought pressure to bear on the Government to start closing the institutions down.

In 1971, the White Paper, Better Services For The Mentally Handicapped, kick-started the community care initiative, pushing for at least half of those in hospitals to be living in the community by 1990. A similar White Paper, Better Services For The Mentally Ill, was published in 1975 by the Labour Government.

Community care was the right thing to do. But the way in which it was carried out failed the very people it was supposed to help.

Between 1955 and 1975, about 80,000 people left the asylums. But their need for medication, accommodation and support was not met. Community care was done on the cheap.

As early as 1985, a Social Services Select Committee report warned that hospital closures had outrun provision in the community. Even worse, a small number of killings by people with mental health problems sparked a fearful and angry reaction by the general public.

Jean Collins, a campaigner from the charity Values into Action, observed that the closures were characterised by ‘chaos and confusion’.

No one had prepared people with learning difficulties for life outside institutions. They were pauperised too, she said, adding: ‘Many were abandoned in a hostile, fearful society.’

Most were resettled in houses that nobody else wanted, on estates where nobody wanted to live. Many became socially isolated. And it wasn’t long before they were targeted.

Many, particularly people with learning difficulties, were desperate for friendship and were befriended by people who groomed them, robbed them, attacked them and killed them – so-called ‘mate crimes’, a recognised subset of hate crime.

Prejudice against disabled people had only grown stronger because so many had been shut away for centuries. Disability hate crime should have been a tragedy foretold.

But it wasn’t. Such crimes will carry on until we face our own prejudices about disability – and, as a society, start to change.

You may want to follow Quarmby's Disability Hate Crime Network on Facebook.

Today, Bonnie at the Fragile X Files writes about attending Partners in Policymaking, a state program that trains people to advocate for government programs for people with disabilities.

There was a detailed and lengthy account of how people with disabilities have been treated and viewed throughout history. Horrifying stories of torture, abuse, neglect, exploitation, misunderstanding, and disrespect. Nearly every example from history was followed by a recent news story showing us how the very same types of treatment and abuse and misunderstanding occur today.

She begins her blog by describing what is too often the reaction of most of us to these horrors:

You know how when there's a story on the news about a child or a person with a disability being abused or injured or killed, and you tend to turn away or turn it off altogether, because it is just too disturbing and you'd rather not hear it?

It's time to listen and speak up.















Check out this amazing New York Times story and video that follows a young man with autism through a one-year transition program designed to ready him for independence. Above is a poster he designed to illustrate his dream of becoming a famous animator and illustrator and having his own apartment.

Autistic and seeking a place in the adult world

It's that time of year again and I am over it

No, not the weather.

No, not making the Halloween costumes... as I have to begin because I need the table cleaned and it is not.

Nope, it's not even the "is Santa evil?" or "Are we going to he ll for dressing up as cheerleaders and cows and saying Trick or Treat?"

Nooo... it's the homeschool vs. private school vs the Evil Soul-Sucking Public School (ESSPS) debate.

And I am so, so frackin over this battle in the Mommy Wars.

(Please note that this does not actually pertain to any of my real life friends. It does, however, pertain to some blogs I read and people I once (note the past tense) knew.)

Once upon a time, I was a teacher and a pretty good one at that. The kids liked me. I liked the kids. Most of the parents liked me. Other staff memebers liked me. The kids learned stuff. They learned ALOT of stuff. I learned too. The principal... well, she was evil. But that's a whole 'nuther blog.

Then I had Joseph and stopped working as a teacher. Instead, I worked as a mommy and a swim coach or instructor. I thought about going back to work as a sub but never did.

Then, when Joseph was older, we thought about homeschooling. I even kept him home from preschool when he was three and worked with a homeschooling co-op. When he was four, he went to preschool and then, after looking at our parish school, sent him to public school. Camille was ready and eager for preschool at 3. Georgie will be 2 years, 11 months when he starts, due to his severe speech problems. I don't know when or if Cole will start.

Being a hippie yet conservative in our thinking and religious, we have ALOT of friends who homeschool. Many of our other friends send their kids to private Catholic schools. In fact, amoung the people I have known since Joseph was a baby, I am one of the few who does  NOT send their kids to Catholic school or homeschool.

When I toodle around the blog-o-sphere, most of the blogs I am drawn too (Catholic, large families, etc) homeschool their children.

Sometimes I think we are the only people on the planet who want to raise children that think outside the box, are devot Catholics, understand their faith and so on... and yet send them to those ESSPS.

(I'm being snarky, here, as I do NOT think public schools are evil nor do they suck your souls or anything.)

When Joseph was little, I once had to sit through a whole dinner with some members of our then-parish who tried to convince us to send our kids to the parish school. Oddly enough many of these same people were, for whatever reason, against sending kids to preschool. As time went on, I watched the parish school get more and more funding and special RE materials (like CGS) while the children in RE got nothing. That really doesn't fly in my book.

As I read blogs, people extole the virtues of homeschooling (especially unschooling). I hear how it is sooo superior to traditional schooling. I have read about Bible verses that command people to homeschool (they don't), how it is so much harder than simply "sticking your kids on a bus" and so forth. I've been privvy to pages and pages about the horrible public school system. I've been told, in person, that the answer to any problem we have at school would be to homeschool. I've horrified people when I tell them I am sending our severly speech delayed son to preschool a full year early.

I wonder if people realize how they make me feel. How would they feel if they had to constantly be dogged and pittied for the choice they made for their children? What if I told people it is wrong to homeschool a child with a disability?

See, the thing is, there is  no perfect educational system. We live in a fallen and imperfect world- nothing is perfect. You can only make the best choice for your kids at any given time with the knowledege you have at that time. And, yes, honestly, after much thought and prayer, I do think this public school is the best place for my children.

When we first moved here, the Catholic school had a waiting list. I could pay the 125 dollar enrollment fee and place him on the waiting list but they could not promise that he would get in. If he did not, we would not get our fee back. We placed him in kindergarden, thinking we might look at the Catholic school again at the end of the year. However, he did so well at the ESSPS and he had made good friends that we chose to keep him there. Camille kept going to the Catholic preschool and we were pleased wtih both schools. For every year of schooling, my children have been very blessed with teachers who really understand them and know how to work with them.

And something that I cannot dismiss... when we moved here, a major selling point was the school just a few blocks away. We found out that the school only serves a mile radius. No matter what schooling option we chose, we knew there would be lots of friends in the area and that the elementary school would be small. We also knew they had an early childhood special needs preschool (ECSN) attached to the school. I thought that was great. The kids with special needs attend preschool with "typicals" (that is, neurotypical) children of their age to model age-appropreate things, like speech. A long time friend sent her sons to a preschool like this in her district and has had lovely things to say about them.

A year ago, it became clear that Georgie was having problems with speech. At the beginning of this year, we began to understand that he might begin preschool early, not as a typical but as a child with special needs. We knew that even if his language suddenly began to explode, he would still need services as an "outpatient." He would go to a school (not every public school has EC speech services) for speech and then to a different preschool or back home with me.

At the beginning of the year all the "outpatient" speech services for the district  moved to our school. Let me say that again- all the early childhood speech services for the preschool crowd are at our school, the school where our child with speech need will go. His "home" school, the school where he will go for K-5. That school. Yes, the other schools with ECSN preschools have speech for their in-house kids. Ours, however, has alot more than most schools.

Honestly, I feel like this is a giant neon sign from God: LAURA, YOUR CHILDREN WERE MENT TO GO TO THIS SCHOOL. THIS IS WHERE THEY BELONG.

Do I think public school is taking the easy way out? *snort* No. Am I uninvolved in my kids education? Heck no! Am I worried about sending Georgie to preschool at 2 years, 11 months- not potty trained, not able to talk clearly? Yes! I trust the teachers (we know them personally) and I trust the communication between the school and myself. But he's my son, and of course I worry about him, just as I do all my children.

The MommyWars over school should be over and done with. We all make the best choices for our kids based on what they and we need. Today, right now, my children are thriving in a public school. I am happy for them to return to school because THEY are happy to go back. I am happy to send them off because THEY (for the most part!) are happy to go.

We are and always will be their primary educators. But I am happy to have their school, yes their PUBLIC school, on my team.

My Front Load Washer Stinks!

A good word to describe Andy and I when we first got married was: poor. Followed by: cheap.
When we first moved to Iowa, everything we owned fit into our car and our van. Every single thing. If you are wondering how you can get a bed in a car, you got the answer, we did not even own a bed. The great people of our church helped us out by providing us with furniture and appliances they no longer used or needed.

Among those items, was a washer without a knob. We had to use a knife in order to move the "dial" around and start the cycles. It actually worked pretty well considering how old it was. We tried to find a new knob but nothing worked. Our second washer came to us "broken." Nothing Kent (the senior pastor) could not fix. But it needed to be fixed, and fixed some more, over and over.

The washer was gone for good. We had an option, get the first washer back, or buy a new one.

And so it came to be that we bought our first appliance and became the owners of a front load washer! And I absolutely loved it! Everything about this washer was better than anything I expected in a washer. That is, until it began to stink! And I don't mean, "It kind of smells." I mean plug your nose, make disgusted face and exclaim, "This stinks! Disgusting! I can't put my clothes in there! Better to have them smell dirty than smelling like that! Guacala! Fuchila!"

I guess this is one of the biggest problems when it comes to front load HE (High Efficiency) washers.

We heard you are supposed to leave the door open when not in use. So we did. And it still smelled!

I started wiping it dry after each load and leaving the door open. It still smelled!

I tried getting in the rubber ring and wiping it. It still smelled!

So I did what any other reasonable human being would do. I asked my friends on facebook.

I did get some great tips. My favorite, was this link.

Some people run a bleach load every week with hot water. I did that, and it did help. Others prefer to go more natural and use white vinegar, which I suppose might even get those smells even better if you don't mind the vinegar smell.

And I found out that there are products for HE machines to clean them out.

When I cleaned that nasty, slimy filter...

I think the smell is better, but I am not done trying to find out what works best.

Do you have a HE front load washer? What do you do to keep it odor free?

Brody's Light



A few days I shared with you that we all need "The Brodies In This World."

Brody is a young man with Cerebral Palsy and an intellectual disability that comes to our church and joins us for our Awana program. Last Sunday, we all worked on memorizing John 3:16. Watching Brody's excitement was something I cherish.

But the story does not end there.

Brody, who by this world's standards might seem broken, is spreading God's word and shining his light.

Brody is determined to share this verse with everyone he knows. Everyone. A few days ago, one of Brody's workers asked Sandy to please write down the verse Brody is trying to recite, so she can help him memorize and practice the hand motions. Brody meets with his friends, and he has something to teach them, a verse he learned at church. Brody gathers with his family, and he makes sure they all listen to John 3:16.

The word of God, His promise, His sacrifice, shared by a young man that some might believe has little to contribute to society. Brody's light is shining. He is sharing the message. People are listening. His contribution might just be one of eternal relevance, and I just picture Brody standing before God when he hears, "Well done!"

It humbles me. I have much to learn from Brody.

School update






















This just in from Sallyanne, who is acting as Ben's special needs assistant:  Ben was invited to the football game next Friday and is very excited about it!

The football game? The school he's going to is known for its athletics.

Alden, one of the school monitors, has taken a liking to him and invited him. Alden also spoke to the captain of the football team who is going to introduce himself to Ben next week and also invite him to watch the game.

We are starting to recognize students and interact with them in the halls.

Ben was talking about the Halloween dance today and remembered that when we went to visit the buddy office yesterday, they were playing video games.

I'm hoping to start a discussion with Ben to see what club he'd like to join.

He is clearly challenged here in a good way and likes school. He is recognizing staff and the school. I no longer have to tell him which way to turn or which classroom -- he knows.

The photo above was taken the day before school started. We went to Cherry Beach. I was a wreck, as I had been all summer, worrying about whether I made the right decision to change Ben's school.

I was told that there was no way this placement could work for Ben. That he would not get the supports he needs and would not be able to interact with the typical students. Such a dire picture of Ben was presented at our first visit to the school that I had to interject with: "He is a human being."

I tried to allay my anxieties by telling myself that even if the school was marginally better than the segregated school, it would be an improvement. I actually have a list posted in my office of all of the reasons why I have to move forward with the school change. Things like "I need to let Ben take risks to grow. We need to give Ben the opportunity to interact in a mainstream setting. Ben may learn more in this setting. We won't know if we don't try."

There were so many times during the summer when I felt -- I can't do this. Perhaps I should just go back to the segregated school. At least he's safe there.

It reminds me of a mom who told me she practically had a nervous breakdown trying to get her daughter's IEP changed. She wasn't asking for much. One of the requests was that her daughter send her an e-mail from school every day, to build on her computer skills.

A colleague asked me the other day -- how did you get Ben into this regular school when they they didn't want him? I remembered that during one of my meetings when I was being told that this was not a possibility for Ben, the board person added: "But if you ask for it, there's nothing I can do."

So I contacted our trustees and superintendent and I asked.

If only I knew that three years ago when Ben was leaving the Metro School for the Deaf -- the best year of school he ever had. Louise