SCHOOL TRANSITION TIME......

Hi everyone, I know it’s been an awful long time since I posted in our blog. It’s been a busy time for us in the last 6 months preparing for Kye starting school in February 2018. What a tough and hard road this Duchenne Journey can be at times. I have taken for granted how easy it was to transition Kye’s siblings into school. Wow so much to deal with when you put Duchenne into the mix.

Well here I was thinking okay we just enrolling him like the other kids….boy was I so far out on that one. Here in NSW the department of education decides if the local school is suitable and can handle his needs, we can’t just send him where we want, it seems kids with disabilities have to go where they are allowed by the government!

We have to apply then they have to asses Kye’s needs and decide how much care he needs, in turn how much funding the school can get for those needs. So eventually we get him enrolled after a lot of meetings and paperwork… Finally his first transition day was upon us. It was a day full of upset & concern. The school has been very helpful and seem very keen to help Kye’s transition be a easy as it can be, but there are definitely some issues that need dealing with. I have questioned my judgement to send him to a main stream school, and questioned whether I should send him or just home school him. I have cried tears. Kye has cried tears. I have been frustrated and outspoken. Totally overwhelmed by the whole situation.

Well first day and already I see the segregation. The teacher was very reluctant to talk with myself or Kye. Her first instinct was to hand Kye over to the Teacher Aide who hovered over our boy all day, just further showing the other kids, he is different. Many kids reluctant to play with Kye, who was hanging out with a teacher. I understand she is doing her job, but I really don’t want her hovering – she is there to help him should he need help, not to prevent him from mixing in with the other kids and being treated as an equal.

I watched awkwardly as they were taken to have a food break, All the kids ran to sit on the stage in the quadrangle area which has quite steep stairs and is completely out of Kye’s reach. All the kids go sit there, but Kye is left sitting down by himself with the teachers Aide. I was appalled, but mostly just heartbroken for my boy. That afternoon when we went to collect him from the classroom we had a major meltdown as he just wanted to play with the toys in the classroom and not go home (I guess that was a bonus he didn’t want to go home) but the throwing himself on the floor and screaming and crying was not my idea of a great end to his first day. The other parents are staring and shaking their heads at my son’s behaviour, completely and utterly unaware of the struggle, the Duchenne, the learning difficulties, the OCD tendencies and the border line autistic behaviour.

Our initial transition also pointed out to us how much the school really is not disabled friendly, considering they have had a student in a wheelchair go though every year there. The step incline on the small ramp on the heavy sliding classroom door was a nightmare for Kye to get in out of the room. The steep step up to the boys toilets is totally unsuitable and so many other things are going to an absolute stress for Kye. The OT has prepared a report and the school will fix these things if the department allocates them the funds…. Not holding my breath. Why do things have to be so difficult, people just seem so ignorant to the needs of Disabled kids, we don’t want their pity, but we could like their understanding that things are not so cut and dry for us.

So a Week later we are suppose to have our second transition… that didn’t happen! The night before this planned transition Kye decides to fall of his bed and split his head open. After a night in the emergency department Kye could not attend school due to his busted head. We had to wait until the next week to attend another session at the school.

The Second Transition went better than expected and Kye had a really good time, however when we were greeted again at the classroom the teacher pretty much just passed Kye over to the Aide and did not treat him the same or greet him the same as the other children. I am at a loss how they can do this, my son may have dmd but he is till just a little 5 year old boy who is in a new environment. We want him treated the same, given the same respect and dignity of the other students, which I feel is not too much to ask for.

I am so apprehensive at to what 2018 will bring us, this whole experience has opened my eyes up to how different kids with disabilities are treated, how society sees them and the stigma that is attached to being “different”. Why can’t we be a more understand race, more accepting, less judgemental and more empathetic?

So we go forward with much trepidation, waiting to see how things work out. I am hopeful that Kye will have a very smooth transaction, but I am also realist and know that Kye’s days at school will have moments of heartache and segregation, I am hopefully also for acts of kindness, Inclusion & friendship.

I give the teachers and staff the benefit of the doubt, this is a new experience for them too, Kye is the first person with DMD they have had at the school, so they may be just afraid themselves on how to best help Kye, time will only tell. Kye is excited to start so that is a positive. Fingers & Toes Crossed for a smooth transition.

Love & Peace to you all 😊