Mac has just spent a week of his school holidays with Rosemary Crossley at DEAL communications in Melbourne.
It has probably been one of the more incredible weeks of our life.
We spoke with Rosie some months back to determine who, if anyone, she recommended for us to see. We knew Mac had a yes ‘facial expression’ but we needed help with the next step of getting consistent yes/no options for him. We were starting to get overwhelmed with the next step in technology to better allow him to access more learning and increase his chances/options for communication.
The upshot, she recommended herself, so we trotted off to Melbourne knowing this was the best option for Mac and us. Within two hours Rosie had provided Mac a YES/NO option using two jellybean switches with his feet being the ‘conduit’ for his decisions. His cheeks will work equally as well, but as I was more unfamiliar with him using his feet we concentrated on them this week.
The rest of the week focussed on helping Mac develop a process for auditory step scanning.
Rosie’s piece of technology of choice for Mac is the Macaw 3. It is an older piece of equipment but it’s capabilities are perfectly suited to Mac’s needs… and the best bit, it bounces, it is a sturdy bit of kit.
Mac uses his left foot and a jelly bean switch for auditory scanning where he controls moving through the choices and removes his foot when he reaches the desired answer. The machine then repeats his answer more loudly to show that is what he is wanting to say (as opposed to the quieter scanning volume while he is making his choice).
Some of Mac’s appointments with Rosie went for 4+ hours. He was incredibly tolerant and determined. I know he is a great natured little kid, but it was nice to hear Rosie comment on how much she enjoyed working with him because he just ‘kept on going’. He did ‘nod off’ mid switch at one stage, but it was a fleeting micro-sleep, then we pushed on.
So where to from here…
Our directive from Rosie is that Mac needs to be accessing the same curriculum as the other kids but designed for a ‘blind child who won’t/can’t use braille’. She believes his level of cognition is easily on par with his peers and therefore we need to keep pushing him along the mainstream curriculum that is merely made accessible, not ‘dumbed down’.
This is the first time anyone has suggested to us that Mac may not have a developmental disability.
It is generally assumed based on his physical condition, lack of vision that there is most likely cognitive delays… but it seems, this is not so!
Some of the questions Mac was answering were pretty interesting.
- We now know for sure he is a Sydney Swans (AFL) supporter.
- He thinks I am meaner than Rosie.
- He’s pretty good with his numbers.
- He knows the wolf didn’t actually eat the three little pigs.
- He knows which letter he needs to turn ‘mat’ into ‘mate’ and ‘hat’ into ‘hate’… although he did suggest we ask him something else when asked to spell ‘dog’ (funny kid).
He did remarkably well on comparative relationships including:
- are watermelons bigger than apples?
- are lemons sweeter than chocolate?
- is night darker than day?
- are parents older than their children?
And even better on the passive relationship with questions including:
- John was hit by Eric, was Eric hit?
- Mary was driven by Alice, was Alice driven?
- Paul was chosen by Steve, was Paul chosen?
These are great insights for school. We will now be able to have a more focussed approach with a much clearer IEP. We now have the opportunity for Mac to be challenged and, subsequently, the ability to collate results and progress more readily.
On reflection I do believe all early intervention and early childhood services need to set goals far higher than they do. I guess I always suspected they needed to (as did Mac, explains why he disliked it so much) now I KNOW they do.
They all need to set a goal for consistent YES/NO by any method as a basic requirement for every student. Communication is power, communication is opportunity.
Any centre, therapist (or even school) who sets a goal below this should be challenged – we all need to play a role in demanding higher expectations for all children… after all the the least dangerous presumption is that of competence, we all know that… now we need to ‘DO THAT’.
Mac’s world has just grown from one with reasonable (primarily because we don’t think small) but limited opportunity to unimaginable, endless opportunity.
This is a wonderful place to be.