Early Knowledge Of A Child With A Special Need

You have a beautiful new baby and he/she has a label that may scare the begeebees out of you. First off, congratulations! Your baby has finally arrived and despite the possible fear that may reside within you now, if you embrace your child and not your child’s label, I promise the pro’s will outweigh the con’s.

You have the wonderful opportunity to learn a new language, the likes of which you may never have imagined. Within your first months together, you’ll learn biological words, baby words, and you will likely learn some therapeutic lingo that invariable comes with having a special needs child. However, the most amazing language you will learn will be the very unique one between you and your child.

If you don’t have a social worker for your child, you need one now. Go to your CLSC and get your child’s name on a waiting list. It’ll make your life easier. Yes, you may have up's and down’s with the whole process, but without a social worker, you probably won’t get anywhere. The social worker has many suggestions of what can be done next. Believe me, there are a lot more things to do, but get your child’s name out there.

The first few months can be overwhelming, but early intervention with the baby and the parent is the best start.

When my babe was born, I quickly heard of Emily Kingsley’s ‘Welcome to Holland ’. It helped to remove my metaphorical blinders. I hope by passing it on, it will help you like it helped me.

Erika Tencer is co-founder of Empowerment - A Special Needs Network and a therapeutic recreation specialist. She can be reached at 1.514.603.4446.


Welcome to Holland

c1987 by Emily Perl Kingsley. All rights reserved


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy . You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice . You may learn some handy phrases in Italian. It's all very exciting.


After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland ."


" Holland ?!?" you say. "What do you mean Holland ?? I signed up for Italy ! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."


But there's been a change in the flight plan. They've landed in Holland and there you must stay.


The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.


So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.


It's just a different place. It's slower-paced than Italy , less flashy than Italy . But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.


But everyone you know is busy coming and going from Italy ... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."


And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.


But... if you spend your life mourning the fact that you didn't get to Italy , you may never be free to enjoy the very special, the very lovely things ... about Holland .

Slavery or freedom . . . We have a choice.

Emancipate yourselves from mental slavery;

None but ourselves can free our minds.

- Bob Marley -

Almost one year ago, our daughter was diagnosed with a rare genetic disease called Familial Dysautonomia (FD). Miriam was 18 months at the time and although she had curious health issues from birth, no one put the pieces together. Some symptoms of FP include: insensitivity to pain, inability to produce tears, poor growth, and labile blood pressure; vomiting crises, pneumonia, problems with speech and movement, difficulty swallowing, inappropriate perception of heat, pain, and taste, as well as unstable blood pressure and gastrointestinal dysmotility. She's had quite a few of these symptoms and, all in all, it's been a very all-encompassing condition, both for our child – and for us. FD is a syndrome that is specific to people of Ashkenazi (Eastern European) Jewish descent. It is also a complex neurological disease that is both progressive and chronic. Oh yeah, there is no cure.

Ironically, Miriam’s diagnosis was made right before Passover, a Jewish holiday that recounts the story of the Jews being slaves in Egypt and their subsequent emancipation. Why ironic? In many ways I felt that with the diagnosis, my freedom was taken away. The Miriam-Webster dictionary defines slavery as:

“1: drudgery, toil
 2: submission to a dominating influence”

Drudgery? Check. Toil? Check. Submission to a dominating influence? Check, check, check.

Part 1 of the story was being paralleled in my life and, as a result, the life of my family. We felt trapped, overwhelmed and, with our heads down, we submitted to a life of slavery, to being dominated by a disease that is beyond our control.

So what of Part 2? What of emancipation? I looked again to the story of Passover. Who gave Moses the strength to stand up to Pharaoh and say “let my people go!” It was his sister, Miriam, (ok, and God) who stood behind and beside her brother. It was Miriam who saw adversity as a stepping-stone to freedom, not a barrier. She was said to be an amazing woman, a prophetess and a midwife.

We weren’t thinking of the biblical figure when we named our Miriam, but it somehow fits. In order for her to be free, to face her challenges head-on and with courage, we have to emancipate ourselves, hence the lyrics from Bob Marley’s song.

This is a process that we are still working through and we can definitely use some coaching on how to do this. Still, there are few things that we did that have made a huge difference:

1. Accept help. I had to accept that I am super but not a superwoman.

2. Get help. We are fortunate to be able to hire a shadow/babysitter/nanny to help take care of our kids, the house and us. It’s clearly not possible for everyone but there is respite care available through various organizations, the CLSC, family and friends.

3. Take space with your partner or confidante. It took us months to make decisions. It was when we had a few hours to ourselves that we were able to share our feelings, articulate our needs and make decisions.

4. Take some time away alone. I think this is the hardest one for me. I always feel like I should be doing something. Back to superwoman? Perhaps. Just do it. Clear the brain.

Slavery or freedom? We do have a choice. And, do I feel like I am a slave in Egypt some of the time? Absolutely. Do I cry and rail at the unfairness of it all? Absolutely.

Then I choose.


Julie Kristof grew up in Montreal, lived in Toronto and Halifax. Now back in Montreal, Julie's husband Murray is doing his medical residency in anaesthesia and Julie is working in market research and communications. Murray and Julie have 2 children, Alex is 5 years old and Miriam is 2.5.