Transitioning… what worked for Mac?

A mum’s reflection one year on – a guest blog by Gina from Inky Ed!

Mac is six years old in Kindergarten at his local school. Mac has severe CP [cerebral palsy] and significant cortical vision impairment. He has no language and little to no purposeful movement.

We had embedded Mac into mainstream day care since he was three. We were strategic in our choices of centres in the hope Mac might eventually go to school with many of the kids. And we were lucky. Mac knew 13 of the 40 children starting kindergarten. They were confident with him and not phased by his multiple, severe disabilities – he was ‘just Mac’. For some, he was also their safe haven, feeling vulnerable they would seek him out and hang onto his wheelchair until they felt better. Others were very proud to call him their friend (maybe even a little ‘superior’) as they explained about how his muscles don’t work properly and about how he drinks from a hole in his belly.

Already having a network of friends made building more relationships much easier – the other children were seeing interactions between Mac and his friends modelled naturally and constantly. In fact, at times a moderator was required to ‘manage’ the process – so keen were the kids to interact with Mac. And Mac, we he was just thrilled to be going to a ‘party called school’ every day. Some of the children he had known socially for years. They knew how to tube feed him. It was wonderful to remove the unnecessary ‘fear factor’ many adults feel about tube feeding by highlighting if they ran into any problems they could seek out one of the other five year olds who could help them out. We also knew some of these five year olds would be fabulous ‘dobbers’ if the adults were doing things “wrong” because of course they knew, as five year olds do, how to do everything.

For the actual orientation days in the year prior we paid for one of Mac’s aides from day care to attend with him. No one else was taking their parents, it allowed Mac to send the message “I’m not precious, I don’t need my Mum and Dad, I’m not sick or frail… but I do have a disability”. It was also so we could enjoy the process as the other parents do – it was nice to enjoy the ‘fleeting sense of normality’ to drop him off with a kiss on the cheek and walk away, just as everyone else did.

First term was very much about setting expectations (they should expect him there all day, every day), settling in and literally giving the teachers and aides time to ‘learn how to drive Mac’. The school were keen to learn all they could.

We worked as a team – the school had willingly admitted this was new for them, but they wanted to learn. This was refreshing to hear – at the heart of all this is attitude and an expectation that all children can learn. We are very fortunate our school staff all strive to have a ‘growth mindset’ – they want to learn as much as they want to teach.

It hasn’t always been smooth sailing, but we have kept communications lines open and every ‘negative’ has been used to learn/develop/change/shift to a positive. The key things we have found help is that as parents we need to understand the system and then help the school manoeuvre within it. The school needs to understand the process and educate the parents and share information. And teachers, well they simply need to be confident they ‘know how to educate’ and not get ‘flummoxed’ by the disability – and as parents we need to support them as best we can.

The introduction of technology, strategies to help him access his curriculum and adapted teaching techniques has been gradual and natural. We certainly aren’t completely there, but we have set a nice groundwork for future years.

Mac has recently spent a week with alternative and augmentative communication expert Rosemary Crossley. “Wow”… now we really have some goals to strive for and IEPs to ‘reset’. With her intensive focus on finding appropriate switch sites for Mac, determining how he can give consistent and purposeful answers based on auditory scanning techniques and testing his knowledge and maturity we have allowed ourselves to increase our expectations for Mac significantly.

So we will all start term four with a renewed focus. With a new ability to consistently answer ‘yes and no’ using technology rather than his more discreet ‘yes’ facial expression Rosemary believes Mac needs to access the same curriculum as the other children at the same rate. More focus will go on ensuring the curriculum is accessible to a child who is essentially blind. Less modifications (or dumbing down) will occur and Mac will essentially need to start working a little harder.

We think he will still enjoy the ‘party atmosphere’ of school… he just won’t be given as many chances to ‘get out of the hard stuff’ from here on in.

It is an exciting time for us all…