Dumb

Missy had a speech therapist in her early intervention setting, at least I assume she did…I can’t actually picture a face or recall a name. The focus then was mainly her physical abilities and limitations and accessing equipment. She did have a very basic eye gaze board with a peep hole and two choices displayed. By the time she arrived at school that had progressed to four choices! Without a reliable nod or shake we interpreted her smiles to confirm what she was saying.

As a parent {and a highly strung one at that!} leaving the comfort of early intervention for school was a terrifying prospect. The school staff were familiar with the wide-eyed terror of newbies and were gentle. Two of the gentlest who cemented my choice of school were her teacher…and her speech therapist. In early intervention the physiotherapists had been my go to, her key worker and our safety net. This seemingly new breed of therapist presented  a simple Pragmatic Organisation Dynamic Display {{PODD}} book and my girls world changed.

I learnt from gentle-speech-who-gave-my-child-a-voice, let’s call her Miss Honey, to assume competence. If I thought she reacted…she did. If I thought I saw a choice made…I did. Previously I would have seen myself as my daughters biggest fan and greatest advocate but within weeks Miss Honey was reporting nods when I had only ever seen smiles. And then my kid exploded in a sea of language and expression. Choice is so important and had been our primary concern to this point. I thought I knew her  well so often filled in the gaps but when my “she will never communicate, learn or interact with you” child started to say the unexpected it was a revelation. Her personality began to fully reveal itself and it was a sight to behold.

The aspect of my child’s disability that makes me most sad has nothing to do with her but rather people’s perception of her. Too often people assume having a complex communication disorder means she has nothing to say. That is simply not true. The only thing that was lacking was a reliable and suitable way to say it! As my daughter developed her proficiency with her PODD she showed us her sense of humour. She revealed her observations of life…and reminded us she is always listening…a l w a y s!

Yourdictionary.com defines dumb…”The definition of dumb is unable to speak or someone or something that appears stupid”. Unfortunately many people assume “unable to speak” suggests someone is “stupid”. My pleasure and mission in life is to show those people they are wrong. Thanks to the Miss Honey speechys in our world and a super determined girl we are well on the way.

Change is in the air

The house is so very quiet. It happens every time they head back to school. But this year feels a little different. This year they have both moved up the ladder. The boy is now in VCE with only two years of school left…eeek! And the girl….she is currently enjoying (I hope) her first day of senior school….s e n i o r. Being at two schools with slightly different criteria tomorrow she has her first day of Grade 6…her final year of Primary school. A year of endings and beginnings at the same time.

Many families are tackling the push and pull of change this week. As children begin primary or high school our babies suddenly look like giants . There will be tears and smiles and lots of sighing…and that’s just the parents. If Missy is anything to go by the kids will adjust and embrace their new challenges a little faster than mum and dad. Having said that yesterday my girl was nervous. Her senior campus is on the same site as her old primary but expectations and some of the people will be new.  After a few chats she downgraded her apprehension from “frightened” to “a bit worried”. So is was with trepidation that I put her on the bus this morning. She was wearing a little smile which I hope stayed and grew wider as she saw her friends.

Change is not my thing. So I have been (am) struggling  with newness of this school year. But it is more than that. For a kid like Missy the future after school is less what will she chose to do and more what will she be able to access. Will she be able to access further study if she wishes? Will she be able to engage in meaningful  interaction with her community? Will she be able to work? Who knows. So today is a big step closer to that uncertainty. For now I will try to remain hopeful….and live in the present. To all families heading into new stages this week…all the best of luck. May your children find their feet quickly and may you have a stash of good wine and/or chocolate close by.

How far?

Google can be my friend. Sometimes it is not. Like last week. I was researching “back to school” plans…looking for some new ideas for the girl to use in her mainstream setting. What I found brought red, hot tears. “…function of cerebral palsied people…”, ” Associated dysfunctions”, “…greatest physical handicaps also have the poorest mental functioning.” Gobsmacked! The language…the labels…the assumptions.

Mostly I see my kid just as my kid. The reality of her severe disability hits hard occasionally but she is still a child/girl/daughter/sister/friend first. Like looking at the proverbial car crash I had to keep reading. It didn’t improve. So who wrote this? UNESCO that’s who.

The first paragraph touted a glowing report of how far we have come since the 1950s. I had been thinking it was written about then but no it was 1989 (just?) twenty six years ago. If I am horrified by the attitude of 1989 imagine how 1989 felt about 1951! My realisation….maybe this is how it needs to be. We gradually shrug off old ideas and learn more about cerebral palsy and, more importantly how to support the people who have it.

I have always thought that if Missy must have CP, at least she has it now, in this time and in this country. I feel for parents of the ’50s and earlier who would have had to fight a whole tide of opinion and bureaucracy simply to have their child at home. The knowledge that I would have struggled to live in this time was apparent but my issues with the attitudes of the ’80s surprised me. So it is my turn to say look how far we have come.

Since I was at school {surely it hasn’t been that long} Inclusion has replaced the idea of integration. It is now expected that children with CP will live with their family {if possible}. There have been numerous advances in medical and physical care…botox for one. Velcro* alone has been a blessing. Just imagine the multitude of fiddly straps that used to be on orthotics, splints and other equipment.

I frequently find myself educating folk about cerebral palsy. Whether it be a quick explanation to a kid in a supermarket or discussing the intricacies of non-verbal communication with new support workers, teaching and advocacy can be tiring. Full acceptance and celebration of difference sometimes seems a long march away. But not so much today. In this moment, with this peek into history – as upsetting as it was – I feel grateful. For we have come a long way. And that is good.

*Note: Velcro was actually invented in the 1940s but I have noticed a big increase in its use just in the time I have been involved in the disability sector. Therapists can use that stuff for anything!

Children with Severe Cerebral Palsy, An Educational Guide

http://unesdoc.unesco.org/images/0008/000850/085085eo.pdf