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…

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Home, preschool, school, high school – what’s the difference?

I just thought I would start this month’s blog theme with a bit of a summary of the different skills that are required in the different contexts - home, preschool, school and high school. These changes can bring challenges for all children, but we need to take special care to prepare children who have disabilities for these changes as many may take a little longer to learn the skills necessary and take a little longer to adjust to the change - expecially if they have developmental delays, Autism and Down Syndrome or find it hard to learn some of the expected behavioural skills.

Just a note: Here I am focusing on the social and emotional factors, rather than academic skills such as numeracy and literacy.


The Physical environment

Home:
Children become safe in their environment as they become familiar with its layout and learn the boundaries. Parents also may have put in place structures such as closed doors, gates and so on to provide physical prompts to those boundaries.

Child Care and other pre-school environments:
The physical environment begins to grow. There will be more space, more people, and it will contain more and different equipment, lighting and noises.

School:
The world opens up even further, especially when we begin thinking about the playground. Here the physical boundaries (ie. what is "out of bounds") may not be as easily to identified.

High school:
Moving to high school generally means attending different classes in different rooms unless the child is placed in a specialist classroom. It will mean more movement during the school day into a range of different spaces that might have different noises, smells, people and sights associated with them. The child may need extra help in learning to navigate around the larger spaces and identifying physical boundaries.


Relating to Adults

Home:
At home your child will spend most of the day with you or with a small number of familiar adults. For the most part, they do not have to adjust to the different way adults relate to them, or the different ways adults might do things.

Families with children who have disabilities will also grow to know what routines help a child cope in their environment. This means that the environment is less changeable, more predictable – especially in the context of who the child has to interact with.

Child Care and other pre-school environments:
If your child goes to child care the first thing that will happen is that they will have to learn to trust and relate to a number of different adults. Secondly, there will be more children for the number of adults available, so they will have less one on one time with adults.

Children’s services Regulations 2004 state that the teacher to child ratios should be:
1:5 for children who are under the age of 2 years,
1:8 for children who are aged 2 to 3 years of age, and
1:10 for children who are 3 or more years of age but under 6 years of age.

While good centres do focus on consistency, there will be a range of different staff in one room each day. The staff may work shift work, and some of the staff may be part-time, casual or leave the centre during your child’s time there so further new faces may be introduced. So your child needs to be able to adjust to these changes, and interact with a range of adults who may have different expectations or routines, and relate to them in different ways.

School:
When your child goes to school, they will have one teacher in class, and a range of other teachers they will need to learn to trust and relate to on the playground. So, again, the change in the key adults in their lives will need to be considered. Further, there will be even less time that a teacher can spend with the child one to one.

According to the NSW Department of Education and Training class sizes on average so far in 2009 were:
- 19.3 for Kindergarten students;
- 21.3 for Year 1 students; and
- 22.6 for Year 2 students.

High school:
If your child is not placed in a specialist classroom, they will be taught by a range of different teachers. If your child is in a specialist classroom, they may integrate into regular classrooms for different subjects such as Personal Development, Health and Physical Education - being taught by different teachers in these classrooms.

As students move to middle school/high school, the relationship with their teachers changes. The are expected to be more independent. And because they spend much less time with individual teachers, they may form a closer, supportive relationship with only one or two of their teachers, their special education teacher, and/or their teacher’s aide.

Class sizes in high school vary depending on subjects and whether they are special education or general education, but there can be about 30 students in one classroom.


Adult-directed routines versus child-directed activities

Home:
At home you might have some set routines for meals, bathing and bed-time. You may also have some more irregular routines such as grocery shopping. But for much of the time at home there is freedom for a child to choose their own activities according to their interest.

Child Care and other pre-school environments:
The routines begin to increase. One of the times children struggle to adjust to the most is mat time, or the time where all children are expected to sit quietly and listen to a story or sing songs. This is often the first time children have experienced this type of group, adult-directed activity.

School:
While Kindergarten or prep classes often have set free-play times, the day is full of routines. It usually starts with assembly – and lining up and being orderly with the rest of the school brings unique challenges for all children new to the situation, but especially for children who have sensory sensitivities, problems staying still, difficulties following instructions and so on.

Then the day alternates between in-class, teacher-established routines, and the relative freedom and “orderly chaos” of the playground. And all these routines are determined by the clock, rather than by the preference of the child. This makes it a big change, especially if the child is coming to school having not experienced a pre-school environment.

High school:
There are added transitions and routines in high school due to the movement from class to class. And students are expected follow the routines more independently. For example, as they move through the high school years they are increasingly expected to follow timetables and get themselves to their allotted classroom at the appropriate time.


Social interaction and rules:

Home:
Social skills and expectations that might be important in the home might include politeness, sharing with siblings and following parent instructions.

Child Care and other pre-school environments:
In these settings, children will need to use further skills that relate to communal living. For example:
- sharing and taking turns with toys and equipment
- Sitting quietly on the mat during group time, waiting for their turn to talk
- Communicating using the conventions of language, rather than eccentric language or gestures used at home

From age three children are usually starting to form friendship groups as well, which requires another set of skills including empathy as children are expected to become less egocentric.

School:
Children are expected to become increasingly self-regulating. Some skills that they will need to learn include:
- sitting quietly and working at their desks
- sitting quietly on the mat to listen to a story
- putting their hand up to speak
- lining up and waiting
- staying in the class during lesson times
- participating in activities they are not necessarily interested in
- asking to go to the toilet

Friendship skills will also be important to help them participate more effectively in the playground.

High school:
The thing that is expected more in high school than in primary school is independence and what we might call maturity. That is, the ability to judge for themselves what might be appropriate behaviour based on where they are, who they are with and their knowledge of the social rules and consequences for their actions.

So, in short, home means fewer people, a smaller physical environment, more freedom and perhaps less social demands. School can be a tiring place as children need to practice self-control, follow routines and relate to more people - both adults and children.

Throughout this month I will try to discuss ways that you can help your child prepare for the next stage in their schooling career.

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