How One Family is changing the Way we see Down syndrome

How One Family is changing the Way we see Down syndrome

How one family is fighting for their child’s right of inclusion; and how this is challenging how Down Syndrome is viewed

Imagine for a moment, selecting a preschool for your child. You go through all the options, make inquiries and schedule appointments to see which fit is best for you and your child.

Now imagine after all that, the school you selected not only rejected you but refused to so much as meet your child.

Imagine hearing these words

“You brought this problem into the world, don’t make it our problem”

For Jodi and Gavin Samuels, no imagination is required. Rather, this scenario and these words were the exact words uttered to them by a board member of a school they had wanted to enrol their daughter Caily into.

Their daughter Caily was born February 25, 2008 with Down syndrome. Down Syndrome is a genetic disorder caused by the presence of all or part of a third copy of Chromosome 21. Caily was diagnosed when she was three days old and the effects of the diagnosis were shocking to the Samuel family.

So many people disappeared from our lives but we also had the rare opportunity of seeing who our real friends are. We also met many amazing people in the special needs world.

Down syndrome, the largest single cause of intellectual disabilities in South Africa, affects one in every 500 children born each year.

Today, October 20, is National Down syndrome Day in South Africa. A day which aims to create awareness and promote the abilities of those with Down syndrome.

The campaign this year is “It’s all in the genes”.  In light of a day created to bring awareness, Jodi shared with us her family’s lessons, struggles and triumphs as they navigate the world with Down syndrome.

Fast forward to 2014, Caily is now a vibrant and thriving six year old girl and has been able to become one because of her parents.

Over the past six years Jodi and Gavin have fought for inclusion, raised awareness and broken down the stereotypes and perceptions of Down syndrome. With the help of Jodi’s blog Metro Imma, the Caily’s World Facebook page and speaking to parent groups, university’s students, high school kids, rabbinic students and even medical students.

“People take your cue for how to behave and interact with your child. We always treated Caily as our princess and gift. We have changed a whole community’s knee jerk reaction to Down syndrome”

A top priority for Jodi and Gavin was including Caily in every aspect of life. Passionate about inclusion, Jody believes that there is a place for every person to be in this world.

There is a place for every person to be in this world

“All our teachings from Torah (Bible) teach us that people with special needs can be included and have a role in society. Some of the great biblical leaders had challenges. Moses had a stutter, Isaac was blind. The world has changed and is more accepting – we have a black president of the US, women have rights in Western Countries, it’s only fitting in this environment people with special needs also be included”.

Finding a mainstream school willing to enrol Caily was a difficult task.

The biggest challenge is getting people to judge Caily by her abilities and not by her diagnosis. Professionals see Down syndrome and they have a knee jerk reaction that she has mental retardation. Caily has repeatedly scored in the normal range on IQ tests but it is so hard to break the stereotype.  I recall once a therapist coming with us in the car to an appointment and Caily was singing all the Chanukah songs and after 5 months of working with her she expressed surprise that she knew the songs.  She was only limited by her own prejudice.

How One Family is changing the Way we see Down syndrome
Caily

For Jodi and Gavin the answer was, “Say nothing” and definitely don’t label Caily.  Explain that different children have different strengths and challenges and that Caily needs help learning to do certain things.  Once enrolled, they enlisted the help of an inclusion consultant who could help guide team meetings and advise on challenging issues.  There was also a need to educate the parents of Caily’s classmates  about her and what they should say to their own kids about having a special needs class mate.

Often our children are excluded because organizations are afraid of including people with special needs or unwilling to put in the effort

While inclusion worked for Caily, Jodi admits it is not for all children in all circumstances. However she does believe that more people can be included than are currently in an inclusion setting.

“As a parent you need to fight to have your child included not because it’s easy but because it’s the right thing to do. Too often our children are excluded not because they cannot be included but because organizations and institutions are afraid of including people with special needs or unwilling to put in the effort. Parents have to both advocate and educate why inclusion is important and can work”

But Jodi warns that it is not easy. “Inclusion is hard work; it’s easier to put your child in a safe special needs environment.  It requires a huge amount of effort but the rewards are worth it”

For the Samuels, looking at their daughter who is happy and extremely confident, they know inclusion was the right choice. As Caily grows older and becomes self-aware of her challenges they make sure she is not stressed or pushed beyond her ability to cope with inclusion. “We always joke that Caily does not see herself as different just better than anyone else. The day I see she is struggling emotionally in her environment is when I will reconsider inclusion.”

One of the reasons why Caily has thrived in an inclusion setting can be attributed to their approach of active acceptance:

“The fundamental principle of the Feuerstein Center  [an international

education, treatment and research center for special needs] is cognitive  modifiability  and that intelligence is not fixed.

If You Love Me Don’t Accept Me As I Am

Professor Feuerstein published a book that is a must read “If You Love Me Don’t Accept Me As I Am”. This approach is about active acceptance, you love your child no matter what and you believe they can change

This concept has helped them from the beginning to treat Caily as someone with potential. “We never treated her differently to our other kids, we never made excuses for her and had typical expectations. The only difference is that we would not be disappointed if she did not achieve or was slow to achieve her goals”

Jodi says that the same approach can be applied to your regular kids, a job

situation or marriage. “With the right support people have a profound ability to change”.

Jodi’s two older children Meron and Temirah adore Caily and like all siblings argue and have sibling squabbles. Their amazing connection is visible to anyone who sees them and Jodi puts it down to Caily’s ability to charm. “She is charming, loving, forgiving and uncomplicated so it’s in a way very easy for them”.

Having a sibling with Down syndrome has also made them extra sensitive and, Jodi believes, better people too. For instance, Meron a sixth grader recently came to Jodi with the news that he was no longer friends with the “in” boys who he had been close with because they were bullying a new kid. “This new kid had been to our place a few times and I had no idea. It takes a strong person at age 11 to leave the “in” crowd for what is right”

It is not only her siblings Caily has changed. Jodi a self-confessed A-type personality has had to slow down and appreciate that success comes in various ways. “I am also very judgmental and she has often made me stop in my tracks and allowed me to reconsider things. I used to be scared of people with disabilities. She has made me realize how important advocacy and education are to change the world”.

Ensuring that each child receives attention and knows how important they are as individuals is tricky, says Jodi. “There is no question that Caily demands more of our time. We try many things and we hope that one day our other kids will not feel that they were less important.”

To ensure this Jodi and her husband have established two rules:

“My husband and I make special alone time with the kids. It could be me taking my daughter with me for a manicure or my husband taking my son to a game. It does not matter what, just as long as we do it regularly.

The second rule is if it is important to them it’s important to us. So we will move mountains to be at a ballet recital or we will make sure they have the best birthday party.”

How One Family is changing the Way we see Down syndrome
Meron, Caily and Temirah

Caily, like many people with Down syndrome is often stubborn and fixed in her ways. Travel and change have forced her to be flexible and that, Jodi says, has been amazing.Travelling is a favourite pastime of the Samuels family which has exposed them to environments and cultures.  With travelling being normal and a family that asks questions, discusses topics and reads a lot, Caily has become an avid learner who is exposed to so many stimuli that keeps her engaged.

The biggest misconception about Down syndrome according to Jodi is that it is widely assumed that people with Down syndrome cannot learn or be independent adults.

“It’s only in the last 20 years that families stopped institutionalizing people with Down syndrome. By hiding them away and giving limited intervention, people with Down syndrome were not given the opportunity to grow or achieve. This is no different to typical children in abusive environments or in extreme poverty where they fail to thrive.”

To the Samuels Caily is simply a child who happens to have some challenges. These challenges are being approached with early intervention and a strong therapeutic approach which is still relatively new. But the amazing success stories of people now in their twenties give encouragement and hope at the opportunities that await Caily.

As for advice to parents facing these challenges, Jodi says the most important thing is belief. “Believe that your child is capable of growth and change”.

Parent support groups are invaluable and Jodi says she learnt more from other parents than anyone else. She suggests also following parents with inspirational blogs which gives you hope and shows you what is possible.

As Jodi reflects on the past six years, she realises that she has redefined perfection to mean appreciating the good in every situation and she now lives by the mantra is “Life does not have to be perfect to be good”

Life does not have to be perfect to be good

________________________________________

Jodi’s Resources:

–      Gigi’s playhouse. It’s both an advocacy and support environment for people with Down syndrome

–      The Feuerstein Center for Enhanced Learning Potential founded by Prof. Reuven Feuerstein. They provide therapies but most importantly a mindset to guide you through the challenges of navigating the world of inclusion.

Down syndrome and Inclusion in South Africa

In South Africa, a public school may not discriminate unfairly by refusing to admit students. Furthermore it is illegal to use tests to determine who will and who will not be admitted to the school.

When placing a special needs child into the school, the school must take into consideration both the wishes of the child and parents. It is not enough to just accept the child, the school must also provide support for them.

More information on Inclusion education in South Africa can be found here

You can support this year’s campaign by wearing Jeans on October 20 and giving R5.00 to DSSA or your local branch/support group for doing so. More information on this initiative can be found here

This article was originally published on 20 October 2014 on The Treaty Life

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Zissy Lewin

Zissy Lewin

Zissy is the co-founder of Nutreats. She likes to make things, do things and wear things.
Zissy Lewin

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