That’s a wrap!

We have now dived into the school holidays… well more like a side-way shuffle into bed on a Friday night at 7.30pm after watching eps of Peppa on the iPad!  Mikey D has had a great term 2, and his report card was just perfect!  And by perfect, I mean no crap about what he couldn’t do but all about what he could do, what he has achieved, what he is working on and how as an individual, he is making sense of his new school environment.

This is such a different experience for me.  When we entered the Special Schooling system at the start of the year, I had no idea what to expect.

Instead, I have enjoyed the learning process of the new structure a special school brings.  No homework.  Why?  Because all these kids, have extra-curricular activities.  Some sport, some therapy based, but all to help them progress in their making sense of the world and their ability to learn what is important to them, in the way that suits them best.

To me, it’s a beautiful model of learning and one in which I try to remember when I deal with the mainstream setting for Mikey D’s twin, who is currently undergoing the verification process.  It’s a long-winded process when there is no clear defining diagnosis.  But that is the way it is, at the moment, and despite what the report card says, it doesn’t indicate that Jaz has any ongoing health issues (despite the reports that I continually have to produce!)

I feel for the teachers in mainstream schools with the enormous pressures they are under to reach the targets that are set for them to prove their ‘teachability’ (I’m not even sure if that’s the right thing to say, but you know what I mean, right?!)  I have had meetings in this past term at mainstream with HOSE (head of special ed), teachers, teachers aide and guidance officers and have just been left feeling that it is a complicated process when you have a child, or children who require a lot of extra assistance.

There is simply not enough support for any teacher and/or teacher aide, to give the children what they truly need.

gap

On the flip side, I feel that Mikey is getting that support incredibly as the numbers are so much lower in a Special School – 5 students to 2 teachers.  Remembering also that a lot of the time the children may have reduced physical ability – Mikey has hemiplegia cerebral palsy so needs assistance requiring anything bilateral, as he has one functional arm/hand.  Don’t even get met started on toileting and the assistance that is required along those lines of the necessities of self care, a basic human need!

It will be really interesting to see what develops in the second half of the year.  I will be sure to come back and let you know!

The most important thing for me is that my kids are happy as they are being supported in their journey to adulthood.  So to get the following comment from Mr D’s teacher, warmed my heart:-

His outgoing and happy nature endears him to others, and he has made many friends at school. His amusing antics have also brought a lot of laughter and joy to our class.

What a great start to his schooling days 🙂

The elephant in the room.

At times it can be hard for me to keep smiling.  Oh yes, I’m very good at slapping on a fake smile – aren’t we all?  It’s easy in this fast pace world to fake it, til we make it, but that’s not really healthy for our mental health in the long run, is it?  Sooner or later we snap.

I have seen a lot of people close to me suffer with not speaking up.  In some respects, even though the dialogue is out there and many awareness campaigns, there is still somewhat a taboo about admitting that you are feeling worn down, emotionally exhausted and the physical exhaustion that goes along with it.

During our time as parents to MrD, it has occurred to me that over time things have become easier in some respects.  The transition of pre-prep to school has been amazing.  The structure of the classroom to meet his needs has really helped.  It’s the meltdowns at home, I never realised that would get to me so much.

I had a little getaway to Melbourne over the weekend, and as usual, couldn’t see everyone I would have loved to, but made the most of who I did see.  When I returned home, I was shattered, and it wasn’t just that I’d been in Melbourne for a long weekend, dancing into the wee hours to some of my favourite 80’s/90’s bands… (!)

Because I had 3 days ‘off’ when I got home, I was back ‘on’ and the first day back ‘on’ we were back at the hospital.  The whole reality of life with chronic health conditions, disability – both intellectual and physical, really hit me again, as I came back from my respite.

It dawned on me, like it was a new thought, that this way of life is actually bloody relentless.  And unlike my neurotypical child, there will be a time, when she is so independent she will take off into the world and not really need me.  Of course, I know she’ll need me for money and advice(!), but not in the same sense that Mikey will always need me and Bryce.

I guess this is one of those things that is always at the back of my head, and I know I must not look too far into the future, but the relentlessness of it all at times does and no doubt, will continue to play with my mental health along the way.  It is a bit of a silent one, because as soon as I open my mouth about it, I feel that I need to justify and readjust my thinking pattern to the here and now, which is really hard when you are mentally exhausted!

The reality of the amount of help Mikey needs and will continue to need, even post-surgery, is a reality that I must face and be realistic about if I want to embark on this adventure and keep my sanity in check!

Do you agree?  Do you think it is a constant process that we have to readjust our thinking patterns and expectations? Let me know! 

Today MikeyD got verified!

Today MikeyD got verified at his Special School!

What does that even mean?  For the first few months, MikeyD has undergone assessments at school for his cognitive abilities as well as physical abilities.

All kids that enter the school need to be verified for ID (intellectual disability).  As MikeyD’s physical disability goes hand in hand with his intellectual disability, he has been successfully assessed as verified!

That means that up until Year 12, he will be fully supported in his school environment, accessing a cirriculum tailored for him!

If you had told me early on that MikeyD would be fully supported in this way, I would have called you crazy! Everything seems to be geared up nowadays about whether you fit into a box and if you grade well.

But guess what?  When we have to navigate a system for our kids with a disability – and I am talking about all of them – educational, medical and societal… there is great support out there.

I think if I had known this early on, some of my anxiety would have definitely been alleviated!

Onwards and upwards Mr MikeD!

Mikey D’s Update on Prep Life!

We have had a kicking start to the school year and now we find ourselves in Term 2!

Mikey has a great class with 4 other little fellas, and 3 incredible teachers.  1 Teacher and 2 Teacher Aides makes sure that all the kids get the assistance they need to thrive in school.

This term, they are checking on their plants, that they planted in Term 1.  The school has a little garden where the budding green thumbs go to check their progress.

There is also a break-out room with a nest swing (one of MrD’s faves!) as well as big padded mats, wedges and tunnels.

There is a trampoline room, where, yep they go trampolining!,  and a pool also for hydrotherapy.

There is tonnes of sensory activities and science.  One day I went to pick Mikey up early for hippotherapy, and for science they were tasting different foods for the different textures and tastes – that was a big hit with MrD!  They also had a popcorn making day 🙂

Mikey is learning independence and how to communicate with his class mates.  They use a combination of Verbal, Pic Com Cards (Picture cards) and Makaton Sign.

He catches the bus everyday, except for Thursdays, when I take him. When we arrive, there are so many friendly happy teachers and volunteers to greet us and high five Mikey and all the other kids as they arrive.  It is simply the best way to arrive at a place – can you imagine if you went to work and every morning you were greeted with friendly faces, cheers and high fives?!  What a difference to the start of the day that makes 🙂

Before Mikey started at his Special School (also known as Developmental School) we were very keen to have him start with his sister in a State (Mainstream) school.  After we were told that he would be in a class with 25 other students, there came a point where we knew that it would not have been the right fit for him.

I think, as parents, we thought that keeping the twins together was the best way to go. It wasn’t.  Since he started at his Special School,  he has not looked back.

Unfortunately there is still a bit of stigma attached to Special Schools.  But as time goes on, this IS changing.  These schools have a very firm place in our communities for some very special individuals.  For successful inclusion in our communities we have to acknowledge that it takes different environments, to foster great foundations of our future generations, unique as we all are!