It's not what I thought.

That’s the way I’ve described parenting a child with disabilities and especially intellectual disability, which I believe is the most stigmatized difference in our culture.

The unexamined images lodged in my psyche – that disability wasn’t normal because it didn’t “exist” in my schools or that it was shameful because my friend’s brother jumped from the back of the station wagon, head down, and ran inside when he was dropped off from his sheltered workshop – are inadequate to describe the richness and complexity of my son’s life.

I want to convey this to others who haven’t walked in my shoes. But often I can’t find the words, because maybe they don’t exist in our lexicon. I want to tell a story or take a photo that shakes people out of their clunky mindsets. But most people don’t really want to listen or see.

Perhaps that’s why I’m so excited about the work of Sue Austin, a British performance artist who’s shattering common perceptions about the wheelchair by taking it places it’s never been before.

As part of the Cultural Olympiad events in London, people are watching Sue move effortlessly underwater like a mermaid – except she’s doing it in a wheelchair.

Motors under the chair propel her forward while Sue steers two acrylic hydroplane “fins” that curve out from the footplate with her feet: up, down, side to side and loop the loop, like a pilot doing graceful air manoeuvres.

Sue appears weightless, unlimited, even glamorous – her long dark hair waving behind the chair, a rush of oxygen-tank bubbles escaping upwards and a school of exotic orange fish passing by.

But something about what Sue calls "Creating the Spectacle" upends the spectator. The liberating images of life under the sea jar with our conventional notions of wheelchairs.

“I wanted to open up a new space where people feel the clash of their preconceptions meeting this new image, and it allows people to view a wheelchair in a completely different way,” Sue says. "I wanted to create a narrative that frees everyone.”

Sue began using a power wheelchair in 1996 after a virus attacked her nervous system and she lost her mobility and balance.

“I’d become housebound and my first experience trying a power chair was ‘this is my freedom,’” she says. “It means I can get back out into life and into the world and it’s so exciting to be able to zoom along and feel the wind on my face.”

She left her job in mental health and went back to school to pursue a degree in fine arts. "It kept me focused on what I could do and how I could see the world in a different way that was valuable," she says.

"When you acquire a chronic illness or disability, you can get trapped into thinking your life has ended and focusing on what you’ve lost, rather than on what can evolve from living life in a different way.”

Even though Sue viewed her wheelchair as freeing, she felt weighed down by people who saw it as a symbol of something broken or limited. "The way people reacted to me completely changed. They saw disability as some kind of tragedy. I came to understand that I’d internalized that message.”

Sue decided to incorporate her wheelchair into her art “playing with it, painting it and I found people reacted really positively to it.”

In 2005 Sue learned to scuba dive and was intrigued with the idea of bringing together scuba gear and her wheelchair in an art performance. “The ideas attached to scuba equipment are ones of excitement, adventure and expansion,” she says.

Like diving gear, a wheelchair extends a person’s activity in the world. But when Sue asked people what came to mind when they heard the word wheelchair, they said “‘fear,’ ‘restriction,’ ‘limitation’ and ‘pity.’”

Sue worked with diving experts and engineers to turn a National Health Service wheelchair into one that could be operated underwater.

Her project “Creating the Spectacle” is one of 29 commissions for Unlimited, a program of the Cultural Olympiad and London 2012 Festival that celebrates art from disabled and deaf artists. It includes screenings of a film of her flying through the water that was shown as part of the Paralympic Flame Festivals, as well as live events in Portland linked to the Paralympic sailing events.

“I’m trying to create work that is so surprising that people don’t have a framework to understand it,” Sue says. “They can’t relate it to their ‘normal’ attitudes about a wheelchair so they end up having to go ‘Wow, how did you do that?' When non-disabled people see it they say ‘I want to go in one of those.’”

Sue describes diving with her chair as “complete freedom and joy. In future footage of the project I’m literally doing loop the loop and it’s like flying in space."

Sue credits her art training with enabling her to “refind my identity and a sense of creating something of value in the world. Through art I could create new stories about how seeing the world differently from a chair could have its own unique value.”

She wants to raise the profile of art shaped by people living with disability. “It brings their unique perspective into the world.”

An important part of Sue's art is the images it leaves in viewers' minds. "Once people have the idea of the underwater wheelchair in their mind, where it's never existed before, they become part of the artwork. They're expanding the intention of the art which is to transform preconceptions."

Patents are pending on her underwater wheelchair and she hopes to work on a future version that would give a person with quadriplegia the ability to scuba dive with mouth controls.

Lesbian Couple Challenging Adoption Ban in Michigan

This article from the Detroit News summarizes the arguments in a case filed in Michigan by a lesbian couple raising three children but barred from adopting them because of the state ban on unmarried couples adopting:
A federal judge on Wednesday said he'll issue a ruling on a request from the state to dismiss a lawsuit challenging the ban on adoptions by unmarried couples, but not before he suggested the plaintiffs amend their suit to encompass the state's marriage amendment.

U.S. District Court Judge Bernard A. Friedman made the remark after a motion hearing in which the state asked the judge to toss out the case brought by a Hazel Park lesbian couple who are raising three children, but are prevented by the state from both being legal parents.

State law says April DeBoer and Jayne Rowse can't adopt their children as a couple, because it is an option available only to heterosexual married couples. The two say the law is unconstitutional and violates their civil rights.

Friedman said Wednesday he'd consider arguments from both sides before rendering his decision, but will first allow the plaintiffs ten days to consider amending their complaint to include a challenge to the state's ban on same-sex marriages.

"That's the underlying issue," Friedman told attorneys, noting that he's "not suggesting they do it."

"Both arguments are about marriage and how broad or narrow it should be. That's the bottom line."

Joseph E. Potchen, a lawyer with the state Attorney General's office, argued Wednesday that the suit should be dismissed because the couple failed to show the children are being injured by the law. Potchen told Friedman that the state's adoption code, as it stands, "protects children."

"Adoption is not a right, it's a statutory privilege," Potchen said.

Michigan's adoption law allows for married couples and single people to adopt children, but unmarried couples cannot.

A change to the state law would have to come from the Legislature, the attorney general's office has said.

Robert Sedler, a constitutional law professor for Wayne State University, argued Wednesday on behalf of DeBoer and Rowse.

Sedler countered that the children are "suffering injury" with the provisions of Michigan law that denies them a second parent adoption solely because the parents cannot legally be married.

"To deny this adoption harms these children. To allow it harms no one," Sedler told Friedman, urging the judge to grant a declaratory judgment to the women. "What we have here is irrationality in the literal sense of the word."
I've posted before (Why Second Parent Adoption is a Good Thing) on this issue.  I strongly disagree with the state's argument that the children are not harmed by the adoption ban and that the adoption law that prohibits this adoption "protects children."  No, it does not.  Children who should have two legal parents are left with just one.  Now, as a single mom, it's probably unsurprising that I'd argue that one parent is better than none.  But I'm not so foolish as to believe that one legal parent is adequate when there is another parent currently raising the child and eager to be a legal parent.  As I stated before:
All that a legal second-parent adoption does is makes sure that there are two parents who have the obligation to support the child financially -- even if the couple splits up. It makes sure that there are two parents from whom the child can inherit even if the second parent doesn't have a will. It makes sure that there are two parents from whom the child can receive Social Security disability and death benefits. It makes sure that the child can continue to have a relationship with the step-parent after the parents divorce, or if the biological parent dies. It makes sure that schools, hospitals, Little League teams, etc., can't treat this parent -- who has been living with and raising the child in fact -- as a legal stranger to the child.

Isn't it in the child's best interest to legalize an already existing familial relationship? It's not like saying no to the adoption will end the relationship, it's just have to limp along without the child having all the legal rights the child is entitled to.
 Have you ever heard anyone say, "The fewer parents a child has, the better!"? I didn't think so.  Under our current legal and social system, the first line of protection for children is PARENTS.  Making sure that children have as few as possible is, indeed, irrational policy.
Raising kids with Special Needs.........

How many times have you been out and about and seen a parent with a special needs child and thought "Those poor parents. I just don't see how they do it." You have probably done it a lot, and that's ok, but have you ever stopped to think that every single child out there has special needs? You are feeling sorry for someone whose child has special needs that you can see, but what about your child's special needs? Our oldest son plays on a competitive baseball team. It is on a little higher level that the city league baseball team, so I guess you could say he is on a "special" team. With being on this team he needs "special" uniforms, a "special" bat, and lots of other "special" protective gear. Our youngest son plays chess. If you play chess or know anything about chess you know that it requires a "special" playing board with "special" pieces to move around that board. Also chess requires a "special" type of thinking that not everyone has along with a "special" type of patience. WOW!! This whole time I thought just our daughter was going to be the one with special needs........boy was I wrong! Children with Down Syndrome have an extra chromosome, that's all. I thought it was going to be so challenging to raise a special needs child, but now I know that I have been doing it for almost 8 years without even realizing it. Our boys know about Down Syndrome, their little sister was blessed in having it. They might not be around it at home like we had planned, but they know that they are kids just like they are and we do not treat them any different. We help anyone if they need help, and we never make fun of others. Down Syndrome is a blessing not a disability. I know our sweet Mary Martin was not going to be treated any different than any of our other children. She was going to have special needs that were going to be very different from our other two children, but they are all very special in their own special way! We were prepared to meet all of Mary Martin's special needs just like we meet those of Joncarlo and Hunter.  Children are going to ask questions when they see someone that looks different, they are innocent and mean nothing by it. We teach our boys that God created every single person different in his own special way. They might have "special" needs that are a lot different than ours, but we are all children of God and we should all love one another. So next time you are out and about don't feel sorry for the parent with special needs, he/she is not looking at you feeling sorry for you...........especially if it's your child that is screaming at the top of their lungs crying because you will not buy them this new toy! HA! Just remember every child has "special" needs!

Children with Down Syndrome will always be close to my heart. Every single time I see one I can't help but smile. They are amazing, and they can do every single thing any other child can do! Only difference is they are rocking an extra chromosome while doing it! Please continue to pray for us as the days are still hard. God is showing me new stuff every single day! God is good!

21 x 3 = Perfect in God's eyes

Hands that Hold

Andy and I walk back to my mom’s house across the street from the park and he reaches for my hand. Fireworks explode in my stomach and I cannot help but smile as we hold hands for the first time. He just asked me to be his girlfriend, and made it clear he didn’t just want to date me, but his intentions were to move towards marriage.

Eleven years later – married for over nine of those – and I realize that the simple gesture of hand-holding has changed. We no longer hold hands in the car, or when we sit together on the couch, or when we go out for walks. It is not that our hands are empty, but rather, they are full. There was a time when we only had each other, but now, we have three precious little girls with small hands that hide perfectly in our own.

As we take walks, Nichole needs Andy to hold her hand –even if just to prevent her from wandering – and she happily walks along her daddy, looking up and smiling at him, letting him know his presence is one of the greatest joys in her life.

Nina holds our hand as she learns to balance and take steps. She needs reassurance that we are with her. She walks ahead with independent steps, but we are quick to offer our hand when we know she needs to gain her balance once more. She knows we are proud of her, of how far she has come along in just one year. Her wheelchair gathers dust in our basement while our steady hands offer her the support that she needs.

Although Ellie is almost seven years old, she still holds our hand just because it is a gesture of love, and she likes to show us that she loves us.

Sometimes, we watch our girls hold each other’s hands. We smile watching big-sister and little-sister try to help Nina along. Or how Ellie offers her hand to her baby sister Nichole, and how willingly Nichole follows along.

These precious little hands are so full of love.

Andy and I drop the girls off at school. We walk down the hall and instinctively reach for each other. We hold hands. Our fingers intertwined as we walk through the school, out the door, and towards the car. There are no fireworks in my stomach. Instead, there is a deep love for the man that I get to do life with. We have journeyed together, grown-up together, and embraced whatever comes our way together. And still, after all these years, he reaches for me and holds my hand, letting me know that I am still his favorite girl.

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US: Exporting Babies

A reminder from Mirah Riben, who blogs at Family Preservation Advocate, that the U.S. is both a sending and receiving nation in international adoption, which really seems bizarre in light of the Hague Convention's insistence that domestic adoption should be preferred over international placement:
With thousands of Americans eagerly adopting and more vying to adopt, why then are American-born babies – shockingly ­– being placed out of the US by American adoption agencies?

The United States is one of a very few nations, including Great Britain, Canada and Mexico, that both imports and exports babies for adoption, or in the parlance of adoption is both a sending and receiving nation.

* * *

Why does any American child need to be taken from his or her culture to a home in a foreign land? Is it ever in a child’s best interest or are they simply commodities being transplanted because of the greed of adoption facilitators or agencies who cannot turn down any opportunity to secure a fee of tens of thousands of dollars?

While the numbers, by all counts, are relatively low, each represents the life of a child who will grow into an adult severed from his homeland: a prosperous fully functioning democracy, not a third world country or a nation in political upheaval as are many of the sending nations. How do those adopted out of the US feel when they understand their placement effectively meant that no one in their nation of birth wanted them?

How can we rationalize this practice while America is the biggest recipient of children from other parts of the world?

Happy birthday to me!

I turned the great big 3-3 last Thursday. As birthdays go, it wasn't a huge deal but Adam and I always use our birthdays as an excuse to snag a sitter (ie, guilt the grandparents into watching the kids) and head out to dinner. Sometimes we even go out without a coupon (living dangerously!) and we always have a  good time.

This year, I ordered my present earlier in the month. I have been lusting after a planner from Erin Condren.com. They are pricey but oh-so-pretty. I already have a giant wall calendar that serves as the hub of the house. Our schedules go on there (color coded by person) along with our dinner menu. I have a sheet of paper that serves as our lunch menu (mostly for the older two and their school lunches). I tried using google calendars and, well, I just need something to write on! I got the custom notebook with the calendar added to it. It was a bit cheaper than planner and had the little extras I want to keep track of notes, doodles, blog ideas and more. (Yes, this is in addition to the small notebook I keep in my big ole 31 wallet. I should not run out things to write on, ever.)

The actual day of my birthday was nice, quiet and relaxing. Adam brought home pizza for dinner and the kids went to bed early. On Saturday he took the kids to the end of the summer pool party and I stayed home to blog. His parents came over to baby sit and we went out to Holihan's. They now have a small plate section. It's real dinners but in normal portions. I had a small steak and fries and it was just enough food to make me feel like I had a yummy dinner without over doing it. (A few weeks ago, I went to Cheesecake Factory with some friends and noticed they have a small plate selection too. I am not sure if this is a new thing or if it has just been that long since I have been to a restaurant that is not a fast food joint!)

After dinner (and dessert!) we went to the mall... only the mall closes at 9! We were surprised but the bookstore stayed open an hour later. So, yes, I went to the bookstore and browsed and read titles and flipped through books to my heart's content. I know it doesn't sound like much but I've had a bit of a boo-hoo crisis this summer. I've been feeling like I am missing out on things I want, need, or love: swimming, the East Coast, time alone, reading. It was wonderful to spend just an hour  reading bits and pieces of books, seeing what is new and giving Adam ideas for Christmas. It definitely recharged my batteries!

My parents are coming this weekend to visit and take us out to lunch or dinner. Adam and I might sneak off for lunch alone and to visit a friend who is in the hospital. I'm thinking of making Basil Lime Chicken, a new recipe I found on Pinterest that is really, really, REALLY good. My father and Adam are taking two of the kids to a baseball game (if they get their act together-which is a whole nuther post) and Mom and I are taking the little dudes shopping. We also have a couple of Weekend Warrior projects that need to be done and the extra hands keeping the kids out of paint, wood, nails and the springs that hold the garage door together is going to be nice! I'm looking forward to the last weekend of my birthday celebration!

Mums sew together a new life for disabled kids

sewing project is changing the lives of two dozen Kenyan mothers of children with disabilities. Malaika Mums, run by the humanitarian group Comfort The Children International (CTC), produces and sells reusable cotton tote bags and coffee sleeves. In addition to providing the mothers with a good wage, the income supports a school with rehab services for their children. The sewing project and school sit side by side in the town of Maai Mahiu, just northwest of Nairobi, breaking local stereotypes about disabled children and their families. I asked Martin Milimu, a CTC occupational therapist who works with the children at school and home, to tell us more.

BLOOM: What stigma is associated with disability in Kenya?

Martin Milimu: In Kenya, some cultural traditions hold that handicaps are a curse from God, shameful and reason to ostracize a child and his or her family. It is believed that the mother is a sinner and the child is her curse. Many children with special needs never leave their home, hidden from the community.

BLOOM: How are children with disabilities and their families treated and what does having a child with disability typically mean for a family there?

Martin Milimu: Children with special needs are often considered cursed and continue to be systematically excluded from public schools, creating even more stigmatization within the larger community. Malaika Kids was created to combat this injustice by providing therapy and education to children with special needs in Maai Mahiu. Public rehabilitation funding is an area that is starting to be explored here in Kenya... On assessing a child with special needs, we sometimes find that fathers have left the mother…”

BLOOM: Do mothers typically become full-time caregivers?

Martin Milimu: The extent of the impairment a kid presents with dictates whether the mother will become a full-time caregiver or not… Most mothers whose children have severe special needs struggle with the difficult choice of going out to work and leaving the child dangerously unattended, or staying home to provide care all day and thus not earning any income.

BLOOM: When did you begin the sewing project and why?

Martin Milimu: The Malaika Mums project and Malaika Kids program were started in 2008 by CTC. The vision is to provide a sustainable, income-generating project for mothers of special-needs children in the community. The mums have an opportunity to earn an income for their families, support an education for their children and create products that improve the environment.

Malaika is a Swahili word which means ‘angel.’

BLOOM: What are some of the products?

Martin Milimu: They’re called LIFE (Livelihood, Invest, Future, Empower) Line. They make reusable cotton bags with graphics related to our programs, messaging or individual customer needs. One of our current bags features a group portrait of the women that make them. They also make reusable cotton coffee sleeves that protect your hands and the environment. One LIFE Jacket can save almost 18 pounds of trash a year.

BLOOM: Is Whole Foods the major buyer of the tote bags?

Martin Milimu: Yes, Whole Foods Market is our major international buyer for the LIFE Line products. The products are purchased through Allegro Coffee, Whole Foods’ coffee supplier and can be found at the Allegro coffee counter at Whole Foods. We also sell these bags locally here in Kenya and in numerous shops throughout the U.S. Whole Foods is also our major client for coffee sleeves – LIFE Jackets. Zazzle.com has also been a huge supporter of the LIFE Jacket and feature them on their online retail website. We also have partnerships with several coffee distributors and have merchandise in over 25 smaller coffee shops around the U.S. Bags and sleeves can be ordered online.

BLOOM: What is the goal of the sewing project?

Martin Milimu: By working together, helping each other, and building a sustainable business, the Malaika Mums have breathed new life into the community of Maai Mahiu while supporting the development of Malaika Kids, the only special-needs program here providing rehab therapy, structured education and nutritional support.

BLOOM: Do all of the children of the sewing staff attend the school while their mothers work?

Martin Milimu: Nineteen of the mums have children with special needs in Malaika Kids, and two of the mums have physical disabilities themselves. The Malaika Kids are located next to the Malaika Mums so the mums can check in on their kids throughout the day. Another 12 kids attend our children’s program, but their mums do not work with the sewing program.

BLOOM: What types of disabilities do the children have?

Martin Milimu: They have various physical challenges that include cerebral palsy, rickets, spina bifida, hydrocephalus, one-sided weakness and muscular dystrophy. Cerebral palsy is the most common medical condition. Some kids have dyslexia, Down syndrome and intellectual disability.

Twenty-five students aged three to 18 are enrolled in the school. Two students commute weekly from hospitals nearby to participate. Three specialized classes – Shooting Stars, Happy Angels and Busy Bees – cater to children with varying needs, from physical impairments to brain and development disorders.

BLOOM: Do you find that the mothers’ attitudes toward their child’s disability change as a result of working with other mothers?

Martin Milimu: Almost every Malaika Mum has said that before joining the program she thought that she had the only child with special needs in the entire community. They have expressed great gratitude at having a community of support where they can share the difficulties and triumphs as they raise their children. Knowing they are not alone has been one of the most widely-stated benefits of the program.

The mums are happy to have their kids receive these fundamental services and they feel as though CTC has helped their kids reach the next level in their development. The mums are empowered to be proud of their children instead of ashamed.

BLOOM: What are typical daily activities at the school? How is the school funded?

Daily activities include developmental therapy… to promote function and reduce dependence and structured educational programs to help these kids attain academic skills.

Income from LIFE Line products helps fund the Malaika Kids program.

BLOOM: How is the sewing project funded?

Martin Milimu: The sewing project is mainly funded by the sale of LIFE Line products. It's also supported by individual donors.

BLOOM: What are some of the changes you’ve seen in the mothers – and in their children – since they began the program?

Martin Milimu: These women now have a steady source of income, the comfort of knowing that their children are receiving the attention they deserve and a true sense of pride in themselves. This income allows them to fully support their children’s special needs, the needs of their entire family and break the cycle of poverty. The Malaika Mums are well respected members of their community, reshaping conceptions of women and special-needs children.

BLOOM: Have you seen any changes in attitudes toward disability in the community?

Martin Milimu: There has been a series of changes from stigmatization to acceptance of special-needs kids in the society as a result of the [programs], following sensitization about special needs and the fundamental services these kids... benefit from. Currently, many children in the community with special needs are being brought here for assessments and advice and many are on a waitlist to join the Malaika Kids program. Unfortunately we can’t accommodate all of them because of our limited space and inadequate resources (staff and equipment).

Check the winter issue of BLOOM for an interview with Joyce Njeri, 23, mom to Tabitha, 7, who attends Malaika Kids. Photo by Chelsea Dee. You may also be interested in:

Kenya National Survey for Persons with Disabilities 2008

State of Disabled People’s Rights in Kenya 2007

Inequality in Inheritance Rights of Adopted Persons

I'm teaching Adoption Law this term, and it's always interesting to cover the history of adoption with the students who tend to have never really considered the legal treatment of adoptees over time.  One issue we talk about is inheritance rights, which in the past excluded adoptees from inheriting from adoptive parents or extended adoptive family unless they were specifically named in a will.  But, I tell the students, that's the bad old days for the most part.  Now, in every jurisdiction, adoptees and biological children are treated equally under inheritance laws.  But, a new case from Massachusetts, reported at Boston.com, reminds us that the effects of the "bad old days" are still felt today:
Adopted children do not have the same rights as biological children to inherit the family fortune under wills written before 1958, the state’s highest court ruled today in a closely watched case.

The ruling grew out of a dispute between Rachel A. Bird Anderson and her adopted brothers, Marten and Matthew Bird, over the meaning of the 1941 will of their great-grandmother, Anna Child Bird, the matriarch of the famous Walpole family who donated Bird Park to the town.

The Supreme Judicial Court said the law in effect when Anna Child Bird wrote the will applies today, not a 1958 law that gave biological and adopted descendents equal inheritance rights, or the 2009 law that made those rights retroactive for all time.

Anna Child Bird’s will “was created by a private person operating in the private sphere, bestowing expectations and interests on her descendants," Justice Margot Botsford wrote for the unanimous court.

“The settled law in this Commonwealth is and has been that one executing a will or trust and distributing property thereby is entitled to rely on the law in effect at the time the instrument was created," wrote Botsford, who called the concept a “bedrock principle" of Massachusetts law.

Before 1958, adopted children were not considered heirs, unless they were specifically named as such in the will.

The Boston Bar Association was one of the legal groups filing “friend of the court” briefs in the case. Lisa C. Goodheart, the association president, said today that the way the court handled the dispute will ease the minds of many families and the estate lawyers who advise them.

“This decision avoids a radical change," Goodheart said. “The long-settled rules of the road and expectations have been reaffirmed with this decision."
So certainty and predictability trumps equal treatment, which is not a terribly surprising conclusion under the law which prizes certainty and predictability.  And, even when the testator's intent is based on discriminatory notions of who counts as family, the law will insist that those biased intentions be carried out.  Sigh.

How do culture and disability connect for you?

By Anchel Krishna

Like many others in the Toronto area, my parents are immigrants. They came to Canada in the 70s from India, their first date was at the CN Tower and after a few years of being married they started their family. My husband, Dilip (above with daughter Syona and I), is in the same boat.

Our marriage started with a pretty typical Indian wedding extravaganza (several days of celebrations filled with music, food, lots of colourful, traditional clothes and hundreds of our closest family and friends). And like many other newly-married couples we enjoyed a few years of dual-income, no-kids living before settling into suburban life and starting a family.

Almost two years ago our daughter, Syona, surprised us with a slightly early arrival. Shortly after she was born, we learned that there had been some unknown issues with the pregnancy that resulted in a specific type of brain damage that increased the risk of several conditions, including cerebral palsy, seizures and learning delays. As the year progressed and Syona continued to miss milestones, she was diagnosed with cerebral palsy.

The saying “it takes a village to raise a child” is definitely true in our case. Our house has a revolving door and the regular players include both our sets of parents, my sisters and their husbands, some cousins and Dilip’s brother and his family when they visit from Vancouver. Similar to many other cultures, this type of closeness is the norm for us. We have a built-in support system, Syona is surrounded by so much love and we have a half-dozen ready and willing babysitters on speed dial.

When Syona was diagnosed, there was one thing we knew for sure: we wanted to be as open as possible. As the Special Needs Parenting blogger for Today’s Parent I’m fortunate to have had that opportunity. And though I don’t delve into Syona’s MRI details with every person I meet, I don’t shy away from telling people about Syona’s diagnosis and how her abilities impact our lives.

There are a few strategies that might make talking about your child’s special needs easier:

• Get comfortable with the information you want to share. I used everyday situations to practise telling people about Syona’s condition, without sharing unnecessary details. My favourite place to practice? The casual conversations with other parents at our local park.

• Focus on your child’s abilities. I’ll usually start off by telling people about what Syona can’t physically do, but I spend the majority of a conversation sharing Syona’s likes, her progress and what she is able to do.

• Set and share your comfort zone. When Syona was diagnosed our family wanted to know if they could tell people. We encouraged them to share Syona’s diagnosis and also gave them some information about the condition so that they were informed and could answer some of the questions that came up.

• Model the behaviour. We tend to be annoyingly positive people most of the time (don’t get me wrong, we have bad days, but mostly, we’re a happy bunch). So many people have asked me how it is that we stay positive and the answer is simple: we truly enjoy our life. Syona is a funny, spirited and happy little girl (most of the time). There are a lot of small joys that we experience every day. We take time to laugh. So far, I don’t get a lot of pity or sympathy (and that makes me happy). I’d like to think it's because people see that we are happy with our life.

• Be respectful. Like I said before, Syona’s “village” is made up of lots of individuals that all have their own ways for accepting this unexpected turn of events. Some of them turn to religion and prayer for comfort, others look to us for guidance and many just accept things after seeing how happy Syona is. Let people get comfortable in their own way.

• Use community resources. Your child’s case manager or therapists might be able to provide insight. You may even have a community group or leader that advocates for special needs in your community.

• When people ask us questions, we treat them as opportunities to raise awareness and educate. I’ve found that questions usually are inspired by lack of knowledge (yes, even the offensive ones). Instead of getting offended, steer the question back to what is appropriate. And if you’re not comfortable answering a question or don’t know, just be honest.

Like any culture, there are varying levels of acceptance about special needs in the South Asian culture. Our family is a little more immersed in special needs advocacy than most. My husband’s aunt and uncle both have muscular dystrophy and run a school in India that integrates special needs kids with typically developing children. My mother-in-law is the founder of Handi-Care International, a charity to help raise funds for the school in India.

But not all our interactions have been sunshine and roses (both inside and outside our cultural community). There are people who look for those miraculous “cures” to what is “wrong” with my child and those who act as though our life is a tragedy or a curse.

Because of Syona’s diagnosis I’ve met several amazing friends (those who have kids with special needs and even many of her therapists). The truth is, I’d love to meet some South Asian parents that have children with special needs and start building a community network (Imagine a Bollywood dance class for kids of all abilities. How cute would that be?).

Since Syona’s diagnosis, both Dilip and I have become more optimistic than ever before. And many days, I look around and think that our life is perfect in its own imperfect way.

How has your cultural community reacted to your child’s special needs? Please share the ups and downs here in the comments! We'd like to include a piece on culture and disability in the next BLOOM magazine and would like to hear a variety of perspectives. How is disability viewed in your culture?

Anchel Krishna is a freelance journalist with experience in strategic communications who cares for her toddler while attempting to string together coherent sentences. She is also the special needs parenting blogger for Today’s Parent Magazine. You can connect with her on Twitter or email her at anchel.writer@gmail.com.

The celebration party!

Ellie's birthday celebration was a blast! I often don't enjoy planning birthday parties, there is just so much that goes into planning food, games, crafts, little gifts to send with the guests, cake, snacks, invitations, and all of that. Not to mention the set-up and the clean-up. I am not a detailed person, and birthday parties require a lot of details when you have several small children at your house.

So, this time, we decided to go with a party hosted somewhere else where all we had to do was show up and bring the kids and the cake. It also happened to be that Monkey Joe's was having a "special" for the month of August. So on Saturday, Ellie had a birthday party that was not only perfect for mom, but for the kids too. And I won't lie, I also love big inflatables. I also have children that require me to help them, so oh boy did I have fun!

Ellie even got her own throne in the party room. It was pretty sweet. And did I mention that I had a helper too? She served the kids juice and pizza, she cut the cake, and she even helped with the opening of the presents. We basically handed her the presents and then she put them all away as soon as Ellie was done admiring the presents. it really was awesome!

 I asked the kids to make a silly face. They happily obliged.

Ellie with Monkey Joe, who also brought her a birthday present.

And Andy with the rascal. Right now she refuses to have pictures taken, so this is as good as it gets!

Almost all the kids with Monkey Joe. Notice Nina is not there. Nina is TERRIFIED of stuffed characters that move and talk, so we made sure to keep Monkey Joe away from her.

 Nina having fun. I just love this picture of her, she was loving being bounced around!

 This is my proof I was there! It was fun!

I wrote more about this day on my writer blog. I would love for you to stop by and read about what this day was like from my "mom" perspective. And if you have any stories to share about a time of celebration, I would love to hear those. So hop on over and leave me a comment, will you?

More than words, part 2

I said I would write more about our journey to give Ben a conventional voice. This is primarily a recounting of an enormous number of things that we "did" over many years, not really an examination of how it "felt" as a parent to be doing these things, which is probably more  enlightening. That will be for another day! Louise

I was visiting my family doctor. Ben was in his stroller, babbling exuberantly and charming the others in the waiting room.

The doctor came to get me and listened in. "I cannot WAIT to hear what he says when he speaks!" she said.

That was the hope that pushed me for the next eight years.

From the time Ben was two I pursued every known therapy and medical intervention that might bring us one step closer to speech. These are documented in stacks of binders of speech, hearing, swallowing and medical assessments and program plans.

I had big dreams and was capable of mounting large campaigns on my son's behalf.

At two years, two months, I had Ben privately assessed by a PROMPT therapist in Toronto (publicly-covered therapy didn't begin until age three in Ontario way back then). PROMPT was the "big" speech therapy here then, where therapists support a child's oral-motor movements by cuing the mouth and lips with their hands. The therapist said he had mild to moderate low tone of his oral/facial muscles that made it difficult for him to control phonation, jaw, lip and tongue movements. "Ben was observed to use up to three word utterances for a range of communicative functions," she wrote.

Over the next year we had many different therapists work with Ben. One PROMPT therapist saw him weekly. "I really like the new therapist," I wrote to a friend at the time. "I love the way she interacts with Ben. She always has some specific activity ready to work with him. They generally sit at a little table together. Ben usually loves whatever she has him doing, and really listens to her and does most of what she asks. He said two things at the last session -- 'oben' for open and 'go away.' He still has just about five to 10 words that we hear often. There are many sounds he is physically unable to make. The therapist says the problem is oral-motor low tone. She said everything is in place to help Ben now, and to give it a year and hopefully we will see some real progress." This therapist also suggested he had auditory processing problems, because he didn't respond to sound the way he should.

In fact, Ben had a permanent, moderate hearing loss in both ears -- which was magnified by constant middle-ear fluid due to structural problems with his eustachian tubes. But that hadn't been identified yet.

At 18 months Ben had his first set of ear drainage tubes put in to combat severe chronic ear infections and middle-ear fluid. While still under anesthetic he had an evoked potential hearing test and we were told he had moderate loss in both ears and needed hearing aids. I just looked up the hospital note (which I only purchased years later) and it says results showed a bilateral, moderately severe sensory neural hearing loss. However, the surgeon said he'd never drained such copious amounts of black fluid from a child's ears before and there was a question as to whether the hearing test was a true reading.

I thought about leaving that part that way.

But to be honest, the question about the accuracy of the test was raised by me. I called the audiologist and asked whether the reading could be affected by the huge amounts of liquid that had just been removed from his ears. Part of me couldn't believe that Ben's hearing was that bad because we had taken him religiously for hearing tests since he was a newborn. And part of me didn't want to put hearing aids -- and their associated stigma -- on my 18-month old. The audiologist said it was possible that the middle-ear problem had compromised the results. She suggested we hold off to see if we might get a closer to normal hearing test in the studio.

On sound-field tests -- where they pipe sounds into different sides of a room and if the child turns to the sound a box with animals dancing in it lights up -- he was testing in the borderline normal range. And following the evoked potential test, he continued to test in that range on what I think is a highly subjective measure. We now know those tests were wrong. Ben was visual. I believe his eyes were peeled for those dancing bears and his visual perception was mistaken for hearing. Despite frequent trips to audiologists, Ben wouldn't wear hearing aids regularly until age five. In an audiology report from our local audiologist at age five it says: "Ben has persistently demonstrated borderline [normal] hearing levels.”

It wouldn't be till he was nine that he had a videoscope (on a private consult we had in the U.S.) which showed he had abnormally small, compressed eustachian tubes which caused the fluid build up and malfunctioning of eight sets of drainage tubes. They blocked almost as soon as they were put in. We were forever squeezing ear drops (that never dislodged anything) in Ben's ears. But the drops caused him great pain. In anticipation of the dreaded drops, he quickly learned to cover his ears when I put him down at night.

For all those years I'd been convinced that Ben's ear infections were caused or exacerbated by my bottle-feeding him. I'd failed the cultural edict of "Breast is best." When I raised this question at the appointment at age nine, still consumed with guilt, the specialist laughed (but in a good way!). "His ears are structurally abnormal," he said, pointing to the image on the screen. "This has nothing to do with breastfeeding."

Sometimes I wonder what might have happened if I hadn't questioned the veracity of the evoked potential hearing test and been so persistent about it. And we had simply proceeded with hearing aids. That said, it was impossible to keep aids in his ears when they were infected.

I think we got his first pair at age four. The audiologist still wasn't convinced that he needed them. It was quickly apparent that the behind the ear aid wouldn't work because Ben's ears were so outstanding that the aids flopped forward and waved about. We got in-the-ear-aids, but because of his painful ear infections, he would not keep them in his ears. At one hearing test, when D'Arcy tried to put them in, Ben fought and cried until D'Arcy ended up in tears. The audiologist said she thought he was getting good sound input without them and we didn't need to persist. At the time Ben was in a junior kindergarten program for kids with physical disabilities but he didn't wear them there either: we were told that a staff person couldn't follow him around constantly to make sure he didn't pull them out and lose them. And at the back of my mind there was always the fear that if in fact his loss wasn't significant, the aids could cause damage.

In addition to speech therapy, we decorated the house with picture symbols and had a picture communication book. Ben was good at getting the book to show us what he wanted. When a therapist wasn't willing to prescribe a sophisticated voice device for Ben (because she wanted us to start with one with only four messages on it) I got a distributor to loan us one for free. I then videotaped Ben using it and went back and complained. We got the Dynamite funded under the assistive devices program. But though Ben became quite good at using it, it wasn't functional for two reasons: It was heavy and he couldn't carry it by himself and it wasn't organized in an intuitive, user-friendly way. It was based on pages and pages of embedded vocabulary, much like a dictionary. Can you imagine having to locate a word in a dictionary in order to use it? And then look up the next word? It took so long he lost incentive.

Because I was on American parent e-mail lists for kids with disabilities I began to hear about types of speech therapy we couldn't access in Toronto.

In addition to his low tone, Ben had picked up the diagnosis of apraxia -- a disorder where the child knows what to say but can't sequence the motor plans necessary to produce words.

And before he turned two he was diagnosed with an uncoordinated swallow, which had been the cause of many choking episodes when he started to eat real food. When Ben swallowed, not all the food went down. Some pooled at the back of his throat. So he needed to do extra swallows or he would choke.

"I thought I had accepted that he had a swallowing problem and that it was related to his low tone," I wrote at the time. "Yet when the OT came out after the feeding study and told me he did in fact have a problem, but that it was an uncoordinated swallow -- probably to do with his genetic condition rather than low muscle tone -- I was shocked and full of grief. My husband couldn't understand why I was so upset. It was then that I realized that somewhere in my heart that little flame of hope had been burning, the one that can lead me to believe things may be all right, even in the face of insurmountable evidence."

When Ben was 4 1/2, we took him to see Nancy Kaufman in Michigan. Nancy was the North American guru for treating apraxia by getting kids to do word approximations: boo boo (hurt finger); neigh neigh (horse); wuh wuh (dog); wa wa (water).

A few weeks before we left, I went back to church. I didn't know how to help Ben speak and my best rational attempts weren't working. I was desperate. During a snowstorm one Sunday only a handful of people turned up. Instead of a regular church service, the minister had us sit on the stage together for an informal gathering. We had an opportunity to ask for prayer and I asked that they pray for our visit to Michigan, and that it would help my son Ben, who was unable to speak. An older man turned to me and said: "Maybe God doesn't want your son to speak. Have you ever considered that?"

"No" I railed. "I don't believe in a god who won't allow my son to speak."

Nancy felt Ben’s speech problems were largely physical -- due to low tone, oral-structural deviations (small lower jaw and mouth; tight, then lips; receeding chin; velopharyngeal incompetence) and apraxia. She was thrilled when he scored well on the Peabody Picture Vocabulary, which tests single-word comprehension. She said he wasn't ready to begin her apraxia program because he first needed to improve his oral muscle strength and coordination. She also felt we needed a second opinion about whether surgery could fix some of his structural problems.

I was ecstatic that Nancy seemed to be drawing a more precise path to the treatment of Ben’s speech problems.

I was the one driving all of our therapy efforts and I had to convince D’Arcy of the merits of these expensive consults. I can see now that I had blinkers on. In order to research, arrange and afford these trips, persuade D’Arcy and make the long drives manageable for our two little kids, I had to be single-minded.

Five months later we drove to Westchester, New York to see Sara Johnson, the renowned expert in oral-motor therapy. Ben was four years and nine months. Sara diagnosed him with a severe oral-motor/feeding/speech disorder secondary to weak muscle strength in the muscles of the abdomen, velum, jaw, lips and tongue; motor planning deficits -- dyspraxia; hearing loss; and structural deficits.

We had to focus on strengthening his muscles through oral and feeding exercises to give him a base from which he could speak she said. Her recommendations were oral-motor/feeding/speech therapy two to three times a week. And 15-20 minutes of oral exercises daily.

We couldn't find a therapist locally who followed this program, so Ben's worker and I did our best with the daily exercises.

They included pre-feeding massage of his face; rubbing swatches of fuzzy, soft, smooth and rough fabrics on Ben's cheeks; rolling a vibrating toothette in Ben's lips in a variety of ways; and having him kiss a small ice cube.

Feeding exercises included using a particular curly straw and getting Ben to chew cubes of food at the side of his mouth.

Oral-motor exercises included blowing exercises with candles, bubbles and whistles. It was suggested I "construct a birthday cake out of styrofoam, tin foil and other decorations, place a candle in the cake, and provide jaw/lip support while Ben blows out the candle five times."

I'm not a crafty person, and I often felt defeated before I had even begun the set up for these activities.

Other oral-motor exercises included making ice straws and having Ben bite in a certain pattern on each side (this could also be done with veggie stix, which weren't yet available in Canada, so I purchased them in bulk in the US). Finally, we had a number of exercises related to Ben chewing gum on both sides of his mouth.

For the next year or so we would travel to Albany, New York (half the distance to New York City) to see one of Sara's associates every couple of months.

When Ben was five we got a second opinion on surgery to correct his oral differences at the New York University School of Medicine. Again, because I was on parent e-mail lists, I heard about monthly team meetings that were held at NYU bringing together multiple specialists to assess children with complex cases.

One mother wrote about a plastic surgeon there who had the highest rate of success in performing velopharyngeal flap surgery, which is used in kids whose palate doesn’t close properly during speech, causing air to escape through the nose and making consonants impossible.

It was thought that Ben had this problem, particularly since as a young child when he drank, liquids came out his nose.

This mom had contacted all of the surgeons across the U.S. to determine their surgical effectiveness – because a rare but scary complication of the procedure is that it can cause sleep apnea.

We drove the 10 hours to Manhattan and stayed for a nominal amount in a medical resident building right across from the hospital.

Ben was ‘presented’ in a large meeting room to a bunch of doctors and therapists and promptly crawled under a table.

He was seen by a plastic surgeon who said he definitely needed the pharyngeal flap surgery. But the catch-22 was that he couldn’t do the surgery until Ben had more speech (which would determine the type of closure needed).

We also saw an audiologist who insisted that Ben must wear hearing aids. He told us that even a mild hearing loss can turn into a major disability in a child with complex problems. Armed with this knowledge we returned home and succeeded in getting Ben to wear the aids (I don't remember what bribes and enticements were used).

We continued on with PROMPT therapy at home – at one point having four 30 minute sessions a week that cost about $700 a month. In addition, we were also able to get some blocks of publicly covered therapy.

Ben’s PROMPT therapist wrote: “Ben is a boy who demonstrates significant delays in body awareness, oral motor execution and sequencing skills, language skills and possibly auditory processing...Ben’s ability to plan some oral motor sequences independently is increasing, such as “no,” “yeah” “me” “on” “one, do/two, dee/three.”

When Ben was six we took him to see a developmental pediatrician at Holland Bloorview. I was frantic about his lack of progress over time. He always had a handful of word approximations but they never blossomed into anything more and sometimes he lost words. I'd never worked so hard at something in my life and had so little success.

"Things would have been different if Ben hadn't had severe constant ear infections for so long during such a critical period," the developmental pediatrician said. But he did, and the doctor felt his problems with speech were related to a central language output problem.

"It is my firm conviction that he has much more 'language' in his head than he is able to express with oral language," he wrote in his note. "I strongly encouraged Benjamin's parents to consider reinstitution of sign language."

We had introduced Ben and Lucy to sign earlier on, but Ben had only picked up a few signs and he couldn't manipulate his fingers into some signs. The doctor felt Ben would never make progress with spoken language but that sign held much greater promise.

He wrote to our schools for the deaf to ask about Ben receiving services or attending their school, but was told that his moderate hearing loss didn't meet the threshold for service. I feel that was a critical juncture where the system let us down.

A few weeks later we registered for a sign-language immersion camp for adults run at the Bob Rumball Centre for the Deaf. We rented a nearby cottage where a worker stayed with Ben and Lucy during the day, while D'Arcy and I and a SECOND worker went to sign-language immersion for adults. This was a costly endeavour but we felt it was valuable.

Under the sea, on wheels

British artist Sue Austin shows off her self-propelled underwater wheelchair developed with the help of dive experts and researchers. It's powered by two dive propulsion vehicles and steered with a bespoke fin and foot-operated acrylic strip.

Adopting Out the Children of Illegal Immigrants IV

I wish this wasn't a continuing series, but you can read part I, part II and part III here.  And now another entry, from the Washington Post, of adopting out the children of illegal immigrants:
Nearly 45,000 such parents were removed in the first six months of this year, according to Immigration and Customs Enforcement (ICE).

Behind the statistics are the stories: a crying baby taken from her mother’s arms and handed to social workers as the mother is handcuffed and taken away, her parental rights terminated by a U.S. judge; teenage children watching as parents are dragged from the family home; immigrant parents disappearing into a maze-like detention system where they are routinely locked up hundreds of miles from their homes, separated from their families for months and denied contact with the welfare agencies deciding their children’s’ fate.

At least 5,100 U.S. citizen children in 22 states live in foster care, according to an estimate by the Applied Research Center, a New York-based advocacy organization, which first reported on such cases last year.

And an unknown number of those children are being put up for adoption against the wishes of their parents, who, once deported, are often helpless to fight when a U.S. judge decides that their children are better off here.

* * *

Critics say the parents are to blame for entering the country illegally in the first place, knowing they were putting their families at risk.

“Yes, these are sad stories,” says Bob Dane, spokesman for the Federation for American Immigration Reform, which advocates tougher enforcement against illegal immigration. “But these parents have taken a reckless gamble with their children’s future by sneaking into the country illegally, knowing they could be deported.”

“Not to deport them,” he continued, “gives them the ultimate bonus package, and creates an incentive for others to do the same thing.”

* * *

ICE, meanwhile, maintains it tries to work with such groups to ensure “family unity.”

“ICE takes great care to evaluate cases that warrant humanitarian release,” said spokeswoman Dani Bennett. “For parents who are ordered removed, it is their decision whether or not to relocate their children with them.”

But immigration lawyers say that is not so easy. A recurring complaint is that clients “disappear,” often sent to detention centers far from where they lived. They are routinely denied access to family court hearings, phones and attorneys. Many immigrant parents do not fully understand their rights, or that custody of their children might be slipping away.

* * *

In the little mountain town of Sparta, N.C., the family of Felipe Montes is facing a similar fight. When immigration agents deported the 32-year-old laborer to Mexico two years ago, his three young sons — American citizens — were left in the care of their mentally ill, American-born mother. Within two weeks, social workers placed the boys in foster care.

Montes and his wife want the children to live with him in Mexico, saying they are better off with their father than with strangers in the U.S. He works at a walnut farm and shares a house with his uncle, aunt and three nieces.

But child welfare officials have asked a judge to strip Montes of his parental rights, arguing the children will have a better life here. Such a ruling could clear the way for their adoption.

* * *

There are some signs of change. . . .

In another rare move, Felipe Montes, the father who wants his children from North Carolina to join him in Mexico, has been granted permission to temporarily return to the U.S. to attend custody hearings, though he must wear an ankle monitoring bracelet.

Still, Gonzalez and others say the changes are too haphazard and random, open to interpretation by individual ICE agents. And many say it seems particularly cruel that deported parents who return illegally in order to be with their children should be a priority for removal.

In Congress, California Rep. Lucille Roybal-Allard has proposed legislation that would make it more difficult for local agencies to terminate the parental rights of immigrants. She calls it “heartbreaking ... that in the U.S., immigration status in itself has become grounds to permanently separate families.” It is, she said, “absolutely, unquestionably inhumane and unacceptable, particularly for a country that values family and fairness so highly.”

One cool life

Nike steps up to the plate with new shoe design

Here's an exciting update from Matthew Walzer, the Florida teen with cerebral palsy who asked Nike to make a shoe that doesn't have to be tied.

Bravo Nike!

Disney Show Jessie Celebrates Gotcha Day

I mentioned last year about this time that Disney Channel was debuting a show about Jessie, nanny to a family with 4 children, 3 of whom were adopted. My kids have been avid watchers, and told me excitedly earlier in the week that they'd seen an ad for a new episode where they were celebrating Zuri's Gotcha Day.  So we're watching it now.

The show gave a pretty standard definition of Gotcha Day as the day an adopted child joined the family.  Oh, and we discover where Zuri is from -- Uganda.  Up until now, it's been the irritating information that she's from "Africa," as if that wasn't 54 different countries and countless different cultures. Almost immediately the show backslides, deciding to use "Africa" as the decorating theme for the party. Sigh.

Ravi, adopted from India, says for his gotcha day celebration he wants curry and an ice sculpture of the Taj Mahal.  That's where Jessie comes up with the idea of using "Africa" as the decorating theme instead of rainbows and unicorns, which Zuri wants.

Now we're hearing Luke's gotcha story, or at least his version of it -- he's a superkid from Krypton they found in the park.  Ravi's story reveals a secret, that they were expecting a baby instead of a young boy.  Now Ravi thinks he's a big disappointment.  And the parents are mad at Jessie who spilled the beans that the family was expecting a baby.  They say they weren't planning to tell him until after they died (though they hadn't quite figured out how).

Now the parents are apologizing for not having told him the truth sooner.  Oh, joy, the parents say, "There's no doubt that you were the kid we were meant to have." Family hug!

But the butler knew better than Jessie, and decorated the whole place with pink unicorns and rainbows.  Success.  But in a nod to Zuri's heritage, Dad brings her a zebra. Oh, and we discover that Dad is the one who told Luke he was from Krypton.  And he asks, "Was that wrong?!"

Zoe and Maya say they liked tonight's show.  But Maya says the parents should have told the truth to Ravi and Luke from the beginning. If he knew the truth from the beginning, Ravi wouldn't have been so sad when he found out. 

Another Adoptive Parent Tells Adoptees How They Should Feel

A new documentary, Somewhere Between, that follows teen Chinese adoptees, is generating disparate reactions. This New York Times review describes it as "[s]hining a relentlessly rosy light on international adoption and the policies that enable it."  But even "relently rosy" seems too much for the adoptive parent who wrote this review for NPR.  She acknowledged that the documentary gives voice to adoptees, but then proceeds to discount those voices as much as possible! 

She notes that one of the girls has returned to China several times to find her birth parents, but the scene where she found them makes the reviewer "squirm:"
And Haley, raised in a Christian family in Nashville, Tenn., makes several trips to China to find her birth parents.

Astonishingly, she finds them. (This almost never happens, given that the only information most families have about their daughters' origins is a form letter stating the child's drop-off location.) And though their reunion makes for a riveting set piece, it made me squirm.

To her credit, Knowlton never falls into the trap of blaming birth parents, most of whom are dirt-poor peasants forced by government policy into making terrible decisions for their newborns.

Yet watching a nervously co-operative Haley receive the DNA results confirming the paternity of the man who had stepped forward as her biological father; perch uneasily on the lap of a man she barely knew; and bear up under the caresses of the woman who, as her birth dad thoughtfully offered, had "thrown her away," I wondered whose crummy idea it was to expose the poor girl to this orgy of photo-ops, and how this "celebration" would affect her sense of who she is, where she belongs — and whether she will ever go back.
Is it the fact that the reunion is public that makes the reviewer squirm?  I don't think so. Her reaction to a scene where an adoptee describes her feelings of being caught between two countries? "Watching the tears roll down Fang's otherwise cheerful face, I wondered whether she'd be this sad if she wasn't facing a camera."  And she goes on to complain about the "dogma" in the adoption community that adoptees might actually feel loss and grief.  She admits, "I parted company with my chosen adoption listserv when I got tired of hearing about 'the holes in all our daughters' hearts.'" So in this adoptive parent's view, all those feelings are illegitimate, made up for the camera, "taught" to adoptees as part of the "dogma."
She also has a problem with any suggestion that these teens might experience identity issues: "Inevitably, though, the film makes it seem that these girls' lives are dominated by worry about who they are and whether they'll be emotionally crippled by conflicting allegiances."  How silly!  After all, this adoptive parent knows better than these teens how they actually feel as well as how they ought to feel.  HER adopted daughter experiences none of this angst! "My Chinese teen was bat mitzvahed last year; she celebrates the Jewish, Chinese and any other New Year that comes with a party. On Facebook, she brands herself as "Jew Crew," "Asian, so deal with it" and a Yankee Brit, among others. Accustomed to a polyglot world, she takes it mostly in stride."

The only time her daughter expressed any adoption angst, the adoptive mom seems to suggest, it was because someone else -- Stuart Little -- told her she should:
Her only visible adoption crisis came when she was about 8, just after we'd watched the excellent movie Stuart Little, about a mouse adopted into a loving family who nonetheless has an "empty space" in his heart. A couple of hours later, my ordinarily sunny, unflappable child burst into tears and asked piteously why her mommy had let her go.

Caught off guard, I opted for honesty and told her it made absolutely no sense to me, and who wouldn't want to be the mother of a great kid like her? After a moment, she asked for her drawing materials and drew three female figures with Chinese features ("You, me, and my other Mommy"), then said firmly, "Okay, let's play something else."
But, see, you don't need to worry about her child being "emotionally cripppled by conflicting allegiances."  See how fast she got over that artificially-created angst?!

The reviewer notes how valuable it is to hear from the adoptees themselves: "but until now most of the copious commentary on Chinese adoption has come from the parents' point of view. Now some of the girls are old enough to speak for themselves." And almost immediately thereafter, she has to tell the story of these adoptees by HER point of view, discounting any reaction from them that doesn't comport with her adoptive-parent worldview.

I haven't seen the documentary, though I want to.  I figured I wouldn't like it much because of the "relentlessly rosy" view of adoption it supposedly presented.  But this adoptive parent seems only to want a relentlessly rosy view, and this documentary didn't deliver it for her because these teens' views contradict how she thinks they should feel.

The upside of weakness

Elizabeth Aquino kindly passed me a link to this interview (click on the podcast at top left) with French geophysicist Xavier Pichon who believes that fragility and empathy make us human.

"...I was very, very impressed by...the way earthquakes are fabricated, which is in the lower layer of the earth where the temperature is high, then the defaults that are within the rocks are activated and the rocks are able to deform without fracture – they become what we call ductile, they flow. But when the temperature is low and cold like in the upper few miles of the earth, then the rocks are rigid, these weaknesses cannot be expressed, and as a result the rocks are much more resistant...and they react by reaching their limit of resistance and suddenly – bing – you have a major commotion and an earthquake.

"The difference is in one case the defaults play a role in putting weakness in that and making things much more smooth. And in the other case it’s very rigid and I find in the society it’s very often the same thing in the community. The communities that are very strong, very rigid, do not take into account the weak points of the community – the people who are in difficulty – tend to be communities that do not evolve. And when they evolve it’s generally by very strong commotion, by revolution."

Parenting, off the grid

I can't remember how our paths crossed, but I've followed Sara Pot's blog The Pot Family for a while and it was a treat when Sara and her husband Ralph attended our talk with Ian Brown. I asked Sara to tell us a bit about her family. The photo above was taken by Elma Regenerus. Check out this post of Sara's for more photos of this one-of-a-kind family. Louise

I've been told that I am a reflective thinker  or maybe even too reflective. Truth is, since the birth of our two youngest daughters, I find myself questioning all the patterns and parameters I had previously assumed. Raising children who need unique care plans and unassuming expectations (can't assume any typical milestones) has challenged my perspective on living. We're in a society that is inundated with information and advice on how to parent and live, but many of us are raising kids that don't fit a typical pattern, whose lifestyles don't fit a tidy set of parameters.

Ralph and I have four daughters: Emily is 10; Sophia is eight; Rachel is six; and Janneke is three. Emily and Sophia achieved the typical milestones in their early development. As they aged, we also grew as parents, learning from our mistakes and celebrating their achievements. Their personalities are very different from each other, yet they both make us laugh and they both have a passion for their little sisters.

Rachel and Janneke are similar to each other but unique from other children. They are globally developmentally delayed, with a diagnosis that is currently under investigation. Both girls are affected in all areas of living, including eating, communication and mobility. Rachel and Janneke are g-tube fed 24-hours a day, and their sounds are similar to a baby, still exploring her voice. Janneke is able to use a Pacer (a walker) to move around on her feet, and Rachel uses a standing frame for periods of time throughout the day. Both girls are unable to independently stand or bear weight on their feet.

Rachel and Janneke are cheery girls, with smiles for those who provide their care. Their joy balances the tears, frustration or middle-of-the-night anger I might have when managing the tube-feeds, dealing with doctors and specialists, and recognizing the limitations placed on our family.

Ralph and I cope with humour and, more importantly, with our faith in God. We might wrestle our entire life with why our girls are disabled, but there are some questions that will remain unanswered. I'd rather choose joy and figure out how to make the most of what we've been given. We trust that God will give us the strength we need, one day a time. And hopefully, the better days will outweigh the crappy ones!

Birthday Girl

If you are my friend on Facebook, you know that my oldest just had a birthday on Tuesday. Yes, my sweet Ellie is a year older and right now her favorite question is, "How old are you?"

We had a full and fun day on Tuesday, followed by a full and fun day on Wednesday, and today was also a fun and full day. Not all related to her birthday, but it has made a great birthday week. Now we await the arrival of grandma and auntie, and then Saturday is the fiesta!

I have not been able to update the blog all week, but I had to share just some pictures of the birthday girl on her special day.

Ellie woke up to balloons, a present that helped get her ready for the day (dress, necklace, headband) donuts, and a birthday girl pin.

We then had a string scavenger hunt. I basically string some yarn around the house and she has to follow the string all around and find presents hiding along the way. I did this for her when she was three years old and she wanted me to do it again.

She opened presents from us and grandparents, which made the sisters a little jealous (it happens every birthday, regardless of who's birthday it is). You can see here how excited Nina is to see Ellie open presents!

One present I got for Ellie was the game "Guess who?" I always wanted it as a kid and never got it. I loved it, and I won't lie, I still do. Ellie and I played all day. She loves it, I love it, we play. Oh the joys of being a mom! For real friends, this was an awesome present!
Then we went to Cherry Berry to celebrate some more. I would have chosen Coldstone, but what can I say, the kids like Cherry Berry.
The birthday girl and I took a self-portrait, just to prove I do exist and I am not just the one that snaps pictures.
And a picture with daddy, the favorite in our family. Seriously, all 4 of us fight for his attention. What can I say, he is a lucky guy! He has 4 girls that adore him. Or maybe we are the lucky ones, he is an incredible man and a great daddy.
 And we had some chocolate cake!
Next up, the birthday party. It is going to be so much fun!
Do you know where you shop? Well let me just tell you!

Most everyone loves Target and probably shops there on a regular basis, well did you know that Target is "Down" with Down Syndrome!!! That's right folks Target uses children with DS to model in their ads.
This ad came out earlier this year and features Ryan (in the orange shirt) a six year old with Down Syndrome. I came across this information by reading the blog "Noahsdad.com". It is a really awesome blog that you should check out!! I have to admit that most of the info I am posting did come from his blog. This Target ad wasn't a "Special clothing for Special People" ad. There wasn't a call out somewhere on the page proudly proclaiming that "Target's proud to feature a model with Down Syndrome in this week's ad!" In other words, they didn't make a big deal out of it!

5 Things Target Said By Not Saying Anything:

1. They said that people born with Down Syndrome deserve to be treated the same as every other person on this planet.

2. They said that it's time for organizations to be intentional about seeking creative ways to help promote inclusion, not exclusion. (It's no accident that Target used a model with Down Syndrome in this ad; it was an intentional decision. If we want the world to be a place where everyone is treated equal we can't just sit around and watch the days tick away. We have to be intentional. We have to do something.)

3. They said that companies don't have to call attention to the fact that they choose to be inclusive in order for people to notice their support for people with disabilities. In fact, by not making a big deal out of it they are doing a better job of showing their support for the special needs community.

4. They said it's important for the world to see people born with disabilities with a fresh set of eyes. That it's time for us to lay down all the inaccurate stereotypes from the past and move forward embracing the future with true and accurate ones.

5. They said you don't have to spend a lot or you kids to look good! (The shirt's only 5 bucks!)

Even though Target didn't make a big deal out of the fact they used a boy with Down Syndrome as a model in their ad, they said plenty. They said the same things that Nordstrom said when they used Ryan as a model in their catalog this past summer!

I probably would have never seen this one if Noah's dad hadn't posted it. There is not a Nordstrom locally, and I don't do much online shopping, but I am very glad to know that even a high end store like Nordstrom uses models with Down Syndrome in their catalogs without making a big deal out of it!

And last I am sure most everyone has heard about 10 month old Valentina Guerro....... the new lead model for Spanish swimwear designer Dolores Cortes 2013 children's swimsuit collection, DC Kids.

The Daily Mail reported that Valentina is the first person with Down Syndrome to be the main model of a campaign for a prestigious fashion designer! She made her debut at the Mercedes-Benz Fashion Week Swim in Miami Beach. Dolores Cortes walked down the runway holding Valentina in her arms. The designer wanted to make the point that all children deserve opportunities regardless of their appearance or a medical condition. She also said "People with Down Syndrome are just as beautiful and deserve the same opportunities. I'm thrilled to have Valentina modeling for us." 

It warms my heart to know that in this day and time people are showing more and more support for those with disabilities. There is not a cure, it doesn't mean anyone has done anything wrong, it's simply an extra chromosome. It's the "happy" chromosome that many people miss. These children might not catch on as fast as others, but I can promise you this they are just as happy if not happier than most children. They don't see the bad, they don't want for the material things, they are simply happy to be here, and love you like you have never been loved before! Mary Martin didn't get the chance to model for Target, Nordstom, or some big time designer, she got the chance to model for someone much better.......GOD! With her sweet angel wings she is modeling patience to me every single day. When I think I can't go on another day without her she reminds me that I can go on. I need to go on to help others right now, and then one day when God is ready I will be with her again. She is modeling a love that I have never in my life felt before. I love my husband and our 2 boys with all my heart. I see them every single day and I get to remind them of that, but with Mary Martin I don't get to see her, all I can do is whisper in the air "I love you" and know that she hears me. My heart grew in a way that I never knew was possibly. She models inspiration to me and through me to everyone around me. I want to be involved like I have never been before and help people in a way I never knew I could. My eyes are truly opened. Next time you get mad at the car in front of you for going to slow, or the guy at the check out line that is taking forever, stop and think. They might be going as fast as they can with their disabilities. I cry almost every single day......I miss my sweet Mary Martin, but I am so grateful for the time we had, and for God choosing me to be her mother. Everyone says "I don't know why bad stuff happens to such good people." Nothing about our journey was bad. The Lord gives perfect peace to those whose faith is firm. So always trust in the LORD because he is forever our mighty rock! The Bible never once says, "Figure it out." But over and over it says, "Trust God." God is good! Please keep us in your prayers and share Mary Martin's story!!!