Letter to a new mom, who was asking "What will she be like?"
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.
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.
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).
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.
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'.
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.
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
pays to expressing her love.
most 'accurate' assumption is probably to say, "We don't know".
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".
back to your question of what will she be like?
best answer I can think of to 'what will she be like' is, "It depends".
The secret is that it depends on us.
'she' will be is one question, and we can only discover that.
'we' will be is another, even deeper question, and we can create and welcome
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.
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.
big fact is that you already know how to do the most important things: