Finding a School #3 – the OT visits AND maybe, just maybe…

We have a winner!

Well at least, I hope so.

S’s OT met me at the school I’d decided was ‘most likely’ to be the school of my choice – which was school number 3 (if you’ve been following my journey thus far)!  A quick reminder: it’s a school with about 370 kids, very limited experience with kids with physical disabilities, with a good local reputation but with some access issues and the furthest from our home of the ones I’d looked at.

Despite the negatives, I’ve had such a good vibe about this school since my first visit. I’ve thought over the things the principal had to say in response to my questions and been fortunate enough to be able to get a bit of  ‘inside knowledge’ as one of the integration aides is a friend of a good friend of mine. I’ve also been able to speak to a few parents whose children attend the school already and who are very happy with it.

So I was excited about my visit there last Friday with the OT. Excited, but nervous.

Seeing as I’d been having such positive feelings about the school, I was really worried that the OT wouldn’t like it, or the principal would seem less enthusiastic or say something that made me worried about the school’s attitude.

None of these things happened.

The OT did concede that there were some access issues, but we were able to problem solve our way around most of them. There will still be some access points to the buildings that will be very difficult for S to navigate – steps are too steep to provide for ramps (as I suspected) but there are other entry points that he will be able to use.

My biggest concern was about his access to a toilet in the main school building. The current toilets are just NOT accessible for him. We looked at where the staff toilets are and were excited to find a ‘shower room” (yes, weird I know!) next to the staff toilets that is currently being used as a store room – but would make a PERFECT disabled toilet. Hopefully, the powers-that-be who provide funds for these things will agree!

The school is also about to get a new purpose built building as part of the ‘education revolution’ which will also have a disabled toilet and easy access for all students.

Things were looking good!

However.

As great as it was seeing many problems being ‘solved’, at first, I found the experience a little unsettling. I felt uncomfortable about walking around the school with the principal and the OT with the OT making LOTS of suggestions for changes to make the whole school more accessible (to give a few examples – some of the paths are uneven, some doors have knobs instead of handles, some steps have rails which are wide and square, rather than round and easy to grip etc).

I felt like I was demanding special treatment for my son – like a pop star demanding only a certain kind of bottled water backstage at a concert or a customer complaining about the colour of a table cloth in a restaurant. I know these thoughts are silly. I KNOW that what we are talking about is access, and his RIGHT to have this access, but the feeling still niggled and I felt almost a little embarrassed about some of the little things the OT was pointing out – to the point where I found myself starting to say things like ‘oh, I think that will be OK’.

Maybe I was worried that the principal would take the suggestions as personal criticism? I am not sure. But the feeling stayed. for a while.

Until we got talking about a disabled parking space and toilet and the OT pointed out the school should already have one of each -not just for any current or possible future students who might need them, but also in case a grandparent, parent, visitor to the school etc needed to use them – or even if a staff member had some sort of accident and was, even temporarily, in a wheelchair.

At that point, I realised that of course all of this was not JUST for S. It was for S’s benefit to start with, but naturally, better access and improved facilities would benefit the whole school community and other children in the future.

With that realisation firmly in my mind, I found my mindset totally change – and I even found myself pointing things out that the OT missed . After all, if the government has funds to make a school accessible, let’s make it as accessible as we can !

It was with this new found enthusiasm and energy that I had my only “Oh-oh” moment of the morning.

The OT and I were outside one of the entrances she had identified would be a perfect place to build a ramp. The principal had been called away for a minute. When she returned, the OT showed her where the ramp could be built and mentioned that it was important for S to have a path out of the building at this far end, in case of, for example, a fire.

The principal went quiet. She nodded her head and then sighed. This was the moment I had been worrying about. I was sure of it. I was just waiting for her to make a comment that a ramp would be unattractive or unsuitable here or that she didn’t think access from this end of the school was important.

Instead, this is what she said:

‘But what if the fire is at this end of the building?’

So she’d been thinking only of my child and his safety. Glorious lady!

As we were leaving, the principal suggested that it would be nice for me to bring S in to see the school for himself and for her to meet him.

We”ll be lining that up very soon.

So yes, I think we have a winner.

I have almost finished filling in our application form.

Very, very excited and relieved to hopefully have this part of the journey over.

Next up is the applications for funding (for both S and the school) and then, school transition sessions with his kinder and the school, discussions with PT, OT and Speech therapists about how best S will access all aspects of the curriculum etc etc… I will also be visiting another child who has similiar speech and mobility issues to S who is currently in grade 3, to see how it all happens with him in practice. I think this will be a very valuable experience.

So the journey will continue, but I definitely feel one major step closer to my little kinder  boy becoming a big school kid!!!

The business of busy-ness

It’s been such a bussssssyyyy time since term started.

S has had an amazing start to the term. He’s blitzing at kinder. Suddenly interacting confidently with the other kids – taking himself over to join in on games and activities and not relying on the staff to facilitate these opportunities for him. This is a REAL step forward and a very positive one for school next year. He has also been doing some great horse riding and at his swimming lesson on Tuesday he showed off how he could paddle with his arms, kick with his legs AND put his head under the water for the count of ten. Cool. He has grown up so much since turning five. It’s so lovely to see.

On the downside, his eczema has flared up dramatically. No idea why. And after paying $150 for skin prick testing today we’re none the wise either. We might as well have stayed at home.

This morning we also took baby A to the chiro – to be told (as was expected) that he is going great guns. He’s such a healthy, easy little bub (3 months old now, egad!). There was so little to say about baby A that we talked about S instead. The chiro suggested we try withdrawing cows milk for the eczema. We’ll give it a try. I will give ANYTHING a try. I can’t tell you how frustrating it is to be the mother of a 3 month old who sleeps through the night but to still be getting up because his poor 5 year old brother is too itchy to sleep .

M on the other hand, has barely any eczema. Since moving to our new house his skin, his temperament, his attitude, his speaking skills etc etc have improved dramatically. He’s like a new boy. He has started at a child care centre on Mondays while S has his early intervention program. This was a bit of a disaster last term with him liking the first day but hating the next two.  Last Monday he was so hysterically upset at home that I almost cancelled. But then relented and decided we needed to give it one more try. When we arrived he clung to me, crying his eyes out. Until they bought out the train set. Then he let me go, and barely noticed when I left. He had a great day, and another this week. Thank-you so much Thomas, and all your friends. You really are a very Useful engine .

The search for the school takes another step tomorrow too. I’m heading back to the school that I really like, with S’s OT in order to check the school for access issues. I am looking forward to getting another point of view on the school as a whole even more than I’m looking forward to hearing her thoughts on the access issues – it’s being drummed more and more into me now that access is a lot easier to change than attitude. I hope that going back there, I get that great vibe that I felt at the last visit. Fingers crossed!

I have also decided to diet/exercise so fitting in time for preparing separate meals for myself and going from swim/run/walk etc is adding to the busy days we’re having…….. some may say it’s unneccessary seeing as I’ve just had a baby etc. BUT I am determined to end this year as a size 10. I’m close to the big 4-0 age wise and I need this little boost to my self esteem. And now that I am done with making babies I want my body back. Also, I have an awesome wardrobe of size 10 clothes. I’ve refused to buy many size 12 clothes because I have been determined that I SHOULD be a size 10 and don’t want any excuses to stay as a size 12. One week in and the batteries in my bathroom scales have died, so I have no idea if anything has changed, but I feel good for the effort so far.

I am looking forward to this upcoming long weekend. We have NOTHING planned. It’s going to be just what the doctor ordered. Looking forward to us having some time to hang out again at home. Before it all starts again….

Easter Holidays Wrap Up

I love school holidays at the best of times, but after the super busy few months that we had to start this year, I was especially looking forward to these.

It was also the first full school holidays in our house – noteworthy because when we lived at our previous address (a crumby rental unit), M hated staying at home and was constantly dragging us to the door to go out. I couldn’t blame it. It was a dump, we didn’t have much room to play inside or in the tiny back-yard, his eczema flared up because of the trillions of dust mites living in the very old carpet and it was either incredibly hot or terribly cold due to lack of any kind of insulation.

In our new house with its three bedrooms, polished dust-mite free floorboards and big backyard we have the opposite problem – he never wants to leave. So these holidays have been the perfect time to just stay at home. And we did.

The boys spent every day bar about 4 in their pjs all day long and we had a great time. It was such bliss just being able to enjoy each other’s company at home, with no appointments or therapy to rush off to and no place that we had to go or wanted to go to.

The few days that we did go out, we had a great time too.

We took train crazy M on the Puffing Billy steam train for his third birthday (happy birthday to my beautiful boy!). It was a great day out. The only time M ever sits still is on a train and he was particularly mesmerised by the steam train. Equally train mad S loved it too. Baby A just slept all the way there and back – but the odds are pretty much in favour that once he’s old enough to appreciate them, he’ll love trains too!

We also had 2 days out catching up with different parents and kids we know with CP. These outings are always great. So much shared unspoken understanding.

And finally, we took the same annual trek that I have taken since I was little to meet up with my extended family in a small country town about 2 hours from Melbourne for a very cute little Easter parade and then on to a beautiful mineral springs nearby for a picnic. I love my family. It was great to spend time with them. M and S had a great time with their cousins and I enjoyed catching up with everyone’s news. It’s a long trek for just one day, but it’s always worth it. Being there always brings back happy memories of my mum, my childhood and my family as a whole. I love that we’ve kept up the tradition and love that it’s now a special day for my boys too.

Back to business today, we were all up at 6am and out the door by 8am to drop M off at childcare and head off to S’s day of EI. We’ll be off to horseriding tomorrow, then swimming, then kinder, then speech therapy, then the chiropractor, funding applications, school visits….. YEP. It’s term time again. Sigh!

It won’t help us but…

I am still excited when I read about any developments that could possibly prevent brain injuries in new born babies and children.

This article talks about how UK doctors ‘used an inert gas to prevent brain injury in a baby boy who was born in critical condition’.

Apparently the gas cools the brain which can reduce the risk of damage. It will be a long time before they can say for sure that this baby hasn’t sustained any brain injury at all, but so far, so good. A trial is continuing.

If you’re interested in a more detailed account of what they did and how it worked, read this article.

As a total coincidence, not 5 minutes before I read these articles, I had been wondering about this very idea of keeping the brain/body cool after I read this article about a German boy who was rescued from a lake, unresponsive, but who was resuscitated after over 3 hours – a fact doctors are attributing to the fact that the water in the lake was very cold, slowing his metabolism so his body could cope without oxygen for much longer.

As an aside, the boy is reported to have said that he met his grandma in heaven who told him to ‘go back really quickly’. I’m not much one for the supernatural, but I can’t help but love the thought that S might have had a similar experience with his grandma (my mum).

I really hope that the UK trial of this gas continues to show success because these sorts of developments are exciting. It won’t help us, but it gives me some comfort to know that in the future other babies and other families might not have to go through the trauma of a child experiencing a brain injury.

Of course it would be even greater if such developments happened years ago, but there isn’t much point in going down that ‘If Only’ path…

Mad As Hell!

It’s Easter Saturday. But before I rendezvous with the Easter Bunny to collect some eggs for my lovely boys,  I wanted to chip in a word for a campaign that I am more than happy to support. The campaign is in support of the government introducing a National Disability Insurance Scheme - a scheme which makes a lot of sense and which I have been pleased to see getting a lot of positive support in the media from a wide variety of sources .

Click anywhere on the powerful words below from the the ‘Mad as Hell’ website to take you to the ‘Pledge’ page.

I’ve made my pledge, encourage you to do the same AND to pass on the link to your family and friends.

And I hope everyone has a happy Easter .

“We’re Mad as Hell that Australia has a Third World disability support system.

Millions of us are affected. It’s time to make our votes count.

It’s time to take the Pledge.”