M r I

Tomorrow is the day of Hannah's mri . I'm not looking forward to it. Not a fan of hospitals. Tonight I have a headache and a daughter in tears because she doesn't want to miss school - she tells me she needs to learn. I wish these blips weren't there for her to deal with.

Tomorrow will be difficult for her. She'll work hard to understand what the adults want. She'll be brave when they place the canular and a bit scared when they take her into the room with the machine and ask her to ly on the table. She'll struggle to climb up and be awkward in trying to lay herself down but she won't give up. She'll laugh at the headphones designed to dull the noise of the machine and startle when the noise starts for real. She'll enjoy lying there watching a DVD but struggle to lay still for 45 minutes. 

I'm hoping she pulls it off though cos this way is preferable to needing a general anaesthetic for the procedure. After this one we should be able to go straight home.

Wish us well - I'm feeling nervous.

Cranky

I have to say that I'm feeling anger right now. White hot if I let it but I'm tamping it down, as best I can. Maybe smouldering red hot coals.

A diagnosis of Down syndrome might bring fear and unknowns and 'chronic sorrows' but it also brings so much spectacular joyousness.

Just today my beautiful girl brought our family together with charm and grace. She had spent the better part of last week planning a celebration for Boo - the monsters inc character she cuddles to sleep every night.

She allocated tasks in the preparation for all of us. Her father was on cupcake duty duty with her. She had explicit diagrams to help with the shopping list:

It involved 6 eggs, flower, milk, limes, rocket, chocolate, and rice etc. Her brother was on bed making duties and I was to decorate the house.

On a lazy Sunday where we each did our own thing she brought us together - because her task was to perform a dance to Somewhere over the Rainbow for Boo followed by afternoon tea featuring the lemon muffins she'd made earlier in the day with her father.

So yes when I think of Down syndrome I have to smile. That girl, including her extra chromosome brings so much joy to our world. There are so many wonderful things about my daughter that may or may not be partially attributed to the fact that at her core she is both the same and so different.

But on Friday a paediatric rheumatologist confirmed that she has juvenile arthritis. I have to book her in for an mri and the anti inflammatory drugs have started.

I'm furious. This isn't a syndrome to catch us by surprise and them hold us close in a loving embrace. This f@@##er is just about pain and damage and I don't like it one little bit. No pluses or bonuses. It is a disease. It is about 'suffering'. It is nothing like Down syndrome.

So lucky this girl is our guide as our journey takes this difficult side road....for she is mighty indeed. (But I think I'll be calling in favours from our 'team' - I'm feeling rather overwhelmed at the moment).

Why I'm no longer musing in the mainstream...

'Mainstream' hmmm I did think it was time for a name change. 'Mainstream' is one way of indicating that this school is NOT a 'special' school..... yet there you stand with your 'special child' looking for admittance. Surely this term is superfluous by now? I KNOW it isn't a 'special' school, ahem, that IS why I am here smiling sweetly through your patronising elitism!!! The Disability discrimination Act has been in place since 1990 and the Disability Standards in Education since 2005. What is the point of 'mainstream' tag when schools have been places of diversity for years?

Now I understand that this is a fraught issue - but perhaps one of the reasons I can still feel excluded with the 'it's a mainstream school you know' line is the agenda it alludes to. And I use the term 'alludes' to loosely as it isn't very subtle and with 2 new 'special' schools opening up in my area next year, well you get my drift....Why is it that these schools are referred to as 'special' yet other 'specialised' schools such as government selective schools are not?

No I am not in the 'mainstream' I am just in the world. It's my world, I hope it's yours. It's a mixed bag sort of world, a one size fits no-one sort of place. It's somewhere where the learning never stops. It's a hard road, it's a good road. The bad days can be pretty low but ultimately it's a worthwhile road.

I've had 2 interviews at a high school regarding enrolling Hannah and I've spent an evening hearing all about anew special school that will be opening in our area soon. That high school looks good. It's a regular school. It's in our area. Hannah will be learning in her community. There will be a number of students in each year group who know her from primary. It's a place that offers a good chance of duplicating the successes of inclusive primary schooling for her. I have to say I'm even looking forward to it!

The information evening about the special school was interesting. Loads of interest. That says a lot about how well schools are managing inclusion doesn't it? It also reflects upon the way resources are allocated too. There are special schools for gifted students too. I guess there is an awfully large amount of interest in them too. How much of it is for similar reasons I wonder? I worry that the school will struggle to meet Hannah's needs in a satisfactory way (due to expertise and resource issues) and at the same time I worry that I haven't been selective enough in choosing a school for Kit. Will his school have the expertise and resources to challenge him? To assist him in reaching his goals?

I am perhaps spoilt for choice and yet I don't feel as though I truly have much choice at all. I want an inclusive education for both my children and the fact that I am looking at them attending different schools indicates that my choices are not unlimited, and that my children whilst both needing inclusive education experiences, are sufficiently different that I am currently considering separate schools for each.

And so I no longer muse in the mainstream for I am not sure what that is anymore but I am definitely exploring notions of inclusiveness every day.

Inclusive Classrooms

I love this post  - now to transfer these same principles into the High School classroom - it can be done!
Inclusion begins with....

One of my challenges is that as a part time teacher I am at the bottom of the pecking order for classroom allocations - and rooming is tight - so my class of year 7's transitioning into the big world of HS is in a different room every lesson. Such a silly thing - but it really helps disrupt the students' learning. Every lesson has a different 'feel' and it isn't because of my teaching or the boys personality - it's the lottery of room and who ends up sitting where and with whome - and the constant unpredicability of it all.

Expecting and welcoming each student - having a place for everyone - now that is doable. It builds trust and achieves lots. Meeting the students half way helps build successful relationships.

Reinvigoration - A new page in the journey....

This blog was set up to follow my family's journey in the NSW education system. After a while I found that the negative tone of the posts was not providing an accurate picture of that journey - even though those negative posts were all valid - so I stopped adding to Mainstream Musings..... fast forward a few years ...... I have 2 children requiring special education instruction. One has been identified as 'gifted' the other as having an intellectual disability (she has Down Syndrome). They are heading into middle school next year - and so my focus on High School for them will start in ernest. Oh and I have started working in a local High School as a special education teacher and just to ensure that there is no doubt that I am a somewhat psychotic overbearing control freak mother - I am currently studying a certificate in Gifted Education. Welcome travellers.... I hope that this blog becomes a place of positive practical advice and support. This schooling business isn't easy but it can be very rewarding.

My Piece of Advice - for Parents and Carers

Beware the assessments of High School - this seems to be an area where even sensible and caring teachers lose perspective. If your child has an intellectual disability - then ALL tasks should be adjusted in some way. A simple clear task may need extra time to complete or greater adult supervision/assistance to help the student. A breakdown of what the student needs to do should be provided - a scaffold. As the curriculum gets more complex (stage 5-6) then alternate tasks may well be needed. INSIST on them!! Please! Too often a student has to 'make do' with a task that doesn't test what they know, that doesn't provide the student with a valuable learning process. Instead it seems as if sometimes our kids are dragged through tasks by parents and learning asssitants who feel trapped by the system and the task rigidity.

BEWARE these tasks. Refuse to accept reports based on non adjusted tasks.

Adjusted tasks require teachers to have a clear idea of what is the essential skill/information that students need to know/demonstrate and a good working knowledge of what their special needs students can/can't do. Surely that is not an unreasonable demand. It's inclusive education.

Day one

Well we all got through our first day... way too soon to tell yet BUT This morning the twins were very happy to get ready for school and as they are older now I changed their routine a bit to include them packing their own school bags. As we walked to the playground I chatted to Hannah about needing to find the Year 2 line etc. We ran into one of her new teachers just outside the gate and Hannah went happily although a bit shyly to her for a wee hug, then we greeted the principal who Hannah was also very happy to see. He mentioned that he had printed off the Victorian DSAs Guide for Schools re DS learners = and given a copy to Hannah's teacher. Once inside the gate I stopped to chat to another parent and Hannah happily went off to try and find where to put her bag (gotta love the independence!) after a bit though she seemed a little lost although she was in the right vicinity so I went over and helped her...then she sort of looked around, couldn't see anyone to play with and so went off on her own and was playing with some cardboard and leaves she found. It was almost time to line up so I headed over to guide her - and ran into her best friend Z (who is in another class this year) on his way to do the same thing. In the end I cuddled her and asked how she was feeling. I mentioned the Christmas cake that she had been so excited to take to school and share with her friends, and she happily held on to Z as they went over to the lines. Because he is in a different class I also went and made sure that she let him go to his line (!she was clearly excited but also a bit unsure). Anyway I couldn't stay until the end of the assembly to watch them go into class like I normally do because I had to get to my own work a bit early...I felt torn leaving and not seeing for myself that she was ok but at the same time I knew that she wanted to be a 'big girl' and that the school would take great care of her... The lyrics of a random song that I love happened to be going through my head all day: "I got a mother at home with a tear in her eye as she kissed her only baby girl bye bye She doesn’t want me to go, she doesn’t want me to try… You know I just gotta try…" It was sung by an Aussie band Flying Emus in the 1980s that I absolutely loved and although the context was different I could absolutely relate to them today - it isn't that I don't want her to try but I am terrified of her being hurt... I felt the same at the Powerhouse Museum yesterday watching her climbing high up on the roped dome structure in the playground...she has grown up and matured over the holidays. She is more confident with her skills and is wanting to do more. For example: At the beach she actually came out into the water (usually she gets dumped by a wave no higher than her knees right near the edge and quickly moves onto building sandcastles instead - not this time. My girlfriend and I were holding a hand each and she was 'jumping' waves - getting mouthfuls of sea water and occasionally 'drenched' by a wave - and laughing and looking for 'big ones' to jump - I got totally dunked on more than one wave trying to make sure that she stayed safe and fearless :) Then in the pool she swam without an adult in the water with her - in backyard swimming poodles with only a noodle for safety. Also she wants to climb. The first time was at a local park when before I had even realised she had shimmied up a small tree with great excitement and confidence. Next was the large roped dome play construct at the powerhouse which had my heart in my mouth! Then last night in returning to a more settled night routine she read her father a reader and then we all read a story book together - not only did she do pretty well on her reader - but she insisted on having her turn at 'reading' the story book. It was Room On The Broom and her reading level is nowhere near enough to read it but she followed the text with her finger and looked carefully at the pictures on the page and 'guestimated' some of the key words correctly and made sounds (with some clear words) as if she was reading... then Kit read a page, I read a page and her father read a page - we are such a lucky family that even though I desperately wish that learning to read was easier for her apart from the fact that she so wants to do it - I couldn't really care less...I am so very proud of her achievements and her spirit. And today she actually brought all of her lunch box home. And so it is that spirit that means 'she's just gotta try' and I hope that I can hide my tears and do everything I can to support her growing independence... PS I did take the obligatory first day of school photo - it looks surprisingly like the one at the top of this blog! Will post it later.