It’s a boy! It’s a girl! Twins!! Each with 10 fingers and 10 toes and peach fuzz blondish hair for both. The girl is examined and all seems to be well; rosy cheeks, a hint of a smile on the lips. She’s sleeping, with arms outstretched, legs outstretched. Her brother is restless, crying. Wait a minute --- something’s not right. In fact, something’s terribly wrong! The legs seem twisted on the boy, his toes curled; his fists are clenched and won’t release. What is going on?
The ‘perfect little family’, a boy and a girl arriving as a 2 for 1, with the months leading up to ‘the day’ being unremarkable in that there had been no identifiable problems. How could life be so cruel? Or was it? Let’s stop and take stock. The most important thing is being overlooked --- both babies are ALIVE. They are here and now! How is that cruel? After examination and consultation, it was determined that the boy may have cerebral palsy. Passing hours and days would reveal more.
Life is about to take two new parents and two brand new lives on an amazing journey to explore feelings that the Mom and Dad never knew that had – until now!
What’s going to be added to the mix, not just for these new parents, but for every single person involved in the lives of these little persons they created is something no one expected - an attitude adjustment.
I’ve come across many families where there are twins with one having cerebral palsy, sometimes very mild and such that it won’t significantly impact the child’s daily living and learning. In other case, however, the implications of cerebral palsy are profound and life altering for both the child and for ALL those around him. As with many deficiencies to ambulation, how we alter the landscape at home and at school often determines how well a child will adapt. Coddling is not an option. Just say NO to the C word and you won’t have to deal with that B word! This is especially critical when the child goes to school, whether the informal infant school or kindergarten. The importance of grade one preparedness cannot be stressed enough. Twins will make life interesting!
How we perceive others is often borne out of how we conduct our own lives and our tendency to have certain expectations of those around us, those we draw into our circle based on how well suited they are to US. What is called for when parenting or interacting with children who have ‘special’ or ‘different’ needs is how we must adjust OUR attitudes about them, about their circumstance and about how they will respond to the challenges of living in a world that will never fully ‘fit’ them and what we can do to smooth the path. As parents relinquish parts of their ‘job’ to others, namely teachers, educators must fully embrace the notion of nurture and nature. It may take some time to get a sense of a child’s strengths so it’s critical not to focus a lot of time and energy on deficits.
It’s been said that I’m in a rather unique position when it comes to speaking of issues surrounding cerebral palsy; that is true as I’ve had over 60 years of practice and am still at it. Each day has a different set of challenges for me as I age, and the same will be true for ‘challenged’ children growing up in today’s world. Even with advances in modern technology and a range of teaching and learning tools, the emotional impact of parenting a child with disability is universal. It hurts the heart! The emotional impact on the child living in and with the disability is such that those on the outside often misinterpret behaviours, triggers, ‘signs’. This is especially true for teachers and others involved in interactions with the child outside the home.
My message to teachers is - don’t assume anything. What you see in terms of a particular behaviour or a sequence of behaviours of the child who lacks expressive language is often misleading and misconstrued as ‘bad behaviour’ or ‘brattiness’. Look closer! The non-verbal child, especially, is beyond frustrated at not being able to articulate wants and needs. Intellectually intact children with mobility disorders have challenges that may impinge not only on learning but peer interactions, so it’s necessary to pay attention to those ‘hidden’ messages their behaviour may be communicating.
For myself, when I was actively involved in training and educating children of various ages, I was then as I am now, an advocate of the buddy system — pairing an ‘able’-bodied child with he who requires a hand up. Parents must allow themselves to simply step aside and watch the youthful relationships develop and see where living and learning takes their little ones. Teaching and learning is for life!
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca
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