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"What Will She Be Like?"

Letter to a new mom, who was asking "What will she be like?"

Dear T.,

First, let me introduce myself. The people on the Our-Kids e-mail list know me as one of the 'old guys'... I've been involved in the field for twenty-five years, and Faye (my wife) and I worked together for many of those years. In 1984, Faye discovered Amber living in a children's institution in Winnipeg (Amber was three at the time), fell in love with her, adopted her and brought her home. Seven years ago, Faye and Amber and I joined together as a family.

So Amber is 20 now, but I've known her since she was 3. Although I seldom talk about her diagnosis on the OK list, it is probably helpful for you to know that she carries the same label as your daughter - spastic cerebral palsy. She has a very powerful form of spasticity which makes it impossible for her to control the movements of her body on purpose, and she has many uncontrolled movements that are extremely powerful. I joke with her that she's the strongest kid on the block, but also tell her seriously, and lovingly, that she's keeping me and her mom strong as she grows.

As a result of the movement problems, Amber needs us to be her arms and legs. Simply speaking, we do everything for her. More importantly, the CP limits her ability to communicate with words, gestures (although her facial expressions speak volumes), and other methods of communication such as eye-gaze or working a switch (you'll probably be learning a lot about alternative forms of communication, which is a very exciting area).

Now, because she couldn't communicate directly, and couldn't move her body 'on purpose' when someone would ask her to point, or work a switch, or direct her gaze, the professionals who surrounded her gave her a label of [some unmentionable level of] mental retardation. Actually, when she was three, she was labeled with a 'developmental quotient' of 16 - that's 16 out of 100, which is considered pretty profoundly handicapped. The developmental quotient is a score that's made up of many components: physical, social, emotional, communication, and 'intelligence' - whatever that is.

The fact was (and is) that with Amber, there's no real way to accurately measure what people want to measure when they're thinking about 'intelligence'.

But the label - the assumption - that implies that she's not capable of learning very much, that she's not thinking about things, or that she's not 'really there' has the potential to limit the way we think about her, connect with her, talk with her, teach her, and create opportunities for her. It can also limit the way we invite other people to think about her, connect with her and engage her.

My personal assumption about Amber is that she 'gets' everything, and that she's thinking deeply about a lot of things. I get that from paying attention to what she thinks is funny, what seems to worry her, and how kind she is - how much attention she pays to expressing her love.

The most 'accurate' assumption is probably to say, "We don't know".

The most helpful assumption, in my view, is "Let's work on the basis of the idea that she 'gets it, and even more importantly, that she has something wonderful to share with us".

So back to your question of what will she be like?

The best answer I can think of to 'what will she be like' is, "It depends".  The secret is that it depends on us.

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If she is surrounded by love, she'll be a loving person - regardless of 'IQ'.

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If she is surrounded by people who know her, and love her, who believe that they will be an important part of her life and that she will be an important part of their lives, she'll know committed friendship and she'll blossom In that friendship - regardless of 'IQ'.

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If she is surrounded by people who believe that she has something important to share with us and that she will make a contribution to our community, she'll be in the company of people who are always looking for that gift, discovering it, celebrating it, and finding their lives enriched by it - regardless of 'IQ'.

bulletmaybe the gift will be that we learn to love each other more deeply
bulletmaybe the gift is a gift of intimacy, or invention, or a spirit of faithfulness
bulletmaybe the gift is a gift of words (Amber once spelled out, "a child love family")
bulletmaybe it's a gift of silence, and what we learn in silence
bulletone thing I am sure of is that it will be a surprise.

Who 'she' will be is one question, and we can only discover that.

Who 'we' will be is another, even deeper question, and we can create and welcome that.

Whatever her condition, or her 'IQ', or even how much time she has with us, the fact is that she can have a good life, and the people who surround her can have a good life as well.

A little fact (but a very important one) is that there is a lot you can do to encourage and support your daughter's development, and it can be helpful to connect with the professionals and parents who have walked this road before you. You will find people who know a lot about the specifics of helping her communicate, and how to help her body, and how to support her learning.

A big fact is that you already know how to do the most important things:

bullethow to let her know she's loved
bullethow to engage her (I'll bet you spend a lot of time looking at each others' faces, smiling, cooing)
bullethow to invite other people to connect with her
bullethow to stay connected yourself

It's not always easy.   But itís full of hope.  And a big part of that hope is in what we decide to be for each other.

Fair winds!

David Wetherow

Vancouver Island, BC

 

© 2003 David and Faye Wetherow ! CommunityWorks

 
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