Sunday, December 27, 2009

Help

I have been wondering on and off what to include in my talk with the teachers at Hannah's school - the principal (and I agree - in theory!!! yelp!!) thinks I should be present as well as someone from our EI provider - to talk to the whole staff about DS and Hannah in particular - so my contribution is to 'make it personal'. I was thinking powerpoint - hoping their staff meetings are in a place where this is possible. But I also want it to be informal. I want the staff to feel comfortable to coment and ask questions. I know some of them will no doubt already have experience with down syndrome.

Anyhow - I was thinking of starting with a lovely comment Sue left here (but I haven't found yet!!) about how I'd find a teacher who loved Hannah as much as I did - then maybe what sort of questions they might have that I hoped to answer in my presentation. The last bit I think could be about our expectations and dreams - for an inclusive education and for Hannah in particular. Maybe mentioning our 'inspiration' - people like Sarah who have graduated (Class of 2008) and a local girl who got her HSC this year. In the resources I thought I'd mention a few - like DSA NSW, our EI providers who support us as a family and in doing so the school, the CEO who support the teachers and school and in doing so us as a family, internet resources (yes Amanda I'm putting it out there a little!!) like Downsed and Teacher's Space and Learning to be Buddies etc and of course - them - or 'you' as professionals and the ones with experience. Is that too twee? I hope not cos what i'd like to leave them with is the quote "When a child is born with DS, the most important thing that has happened is that a child has been born." - Hence they are our greatest resource because although Hannah has 'special needs' she is first and foremost a child just like all the many and varied others they deal with on a daily basis.

Any alternative ideas or suggestions of how I could approach it - please!! I'll no doubt be pondering it all January - lucky I'm a teacher myself so I can view it a bit like my own lesson prep - imagining I am in class as usual - talking with my students and developing a conversation - which is how i usually operate. If I stuff one up there though - there is always a second chance - this one is so important to me.

Friday, December 18, 2009

Saturday, December 12, 2009

Story about School

I had a great time taking pics of the school to organise a booklet for the twins - put it as a powerpoint for the minute - they love it and are both fascinated by what they might do at school. Sucha simple thing but I thinka lot of kids would benefit - Kit was really enthralled and I am sure it will reduce his anxiety about the unknown. For Hannah it will help her find her way around and meet some of the expectations being in kindergarten means.

Now if anyone knows any good general books about going to school? I bought Hannah a Dora one for Christmas and the brats have one about a dinosaur and how to behave at school. If you know of any relaly good ones let me know as mid Jan I will probably be looking for some.

Ordered school shoes for Hannah yesterday - sizing for her (especially with her new orthotics) is atricky. I was actually after a little shoe she could wear with dresses for the Christmas/New Year party circuit - but givent hat non fitted ehr well I decided I might as well make do with some Mary Jane style school shoes - 2 birds, one stone!

Thursday, December 10, 2009

Preschool and Kindy


Today was the preschool concert for the twins - they had a ball and all the children put on ag reat performance. It was wonderful (and not surprising) to see Hannah participate so well - following ehr peers, doing all the actions, 'singing' in her way. She had a lot of fun. Afterwards I was thinking the teacher's aid for all her good work this year with han - and she commented on how in just the past few weeks Hannah's confidence has really grown adn she is able to get up infront of others etc. She also commented that Han would have partnered with any of the kids (in the song requiring one) except that Kit decided to play 'big brother' today. I had wondered whether they had specifically put them together - it didn't bother me - not if it helped her stay on track - but it was nice to hear that that wasn't necessary.

This morning I plan to drop in some of the books discussed with the shcool at Hannah's planning meeting as well as her homemade pecs folder. I want to take some photoes of te environment so that I can prepare a social story for the twins for next year. I have also got a Christmas card - I do aprreciate the time and effort the school principal and teachers have already put into our family.

Tuesday, December 8, 2009

Same post different picture...

I posted this on Shamptons too - but thought it belonged here as well - perhaps it helps explain our commitment to the crazy journey of inclusive education that we are about to embark upon. Hannah still loves this song - the pirate song: "We'll go this way, and that way, forwards and backwards, across the rolling sea. A bowl of jelly to fill my belly and that's the life for me. Hoy!" - maybe I can blame EI for our spirit of adventure too?
As this year ends I would like to write a special thank you to Hannah's EI team. It is the end of our family’s involvement in EI. We have learned so much and will forever feel grateful for the role they played in our family life.

In Oct 2004 I gave birth to twins. Within a couple of days we knew that the little girl, Hannah had Down Syndrome. We left the hospital after a couple of weeks in the special care nursery and had our first meeting with the then area coordinator and the physiotherapist. They came to our house and explained to us just what early intervention was all about. We knew that Hannah would be having heart surgery to repair an AVSD before Christmas. They were wonderful. They made a point of mentioning that there were other EI providers around and for us to let them know later whether we wanted to go with their service model - family focussed and transdisciplinary.

We rang the other main provider but in the end we had met this team and liked what we saw and heard so I rang to confirm our membership of the cooperative. The PT visited us with some tips on how to best carry Hannah and get her lifting up her head things like giving her tummy time to build up her muscles and Heather asked about feeding issues. We were on the road to early intervention.

The surgery happened as planned and after some worries we brought both babies home from Westmead children’s hospital. It was the long school break and in early Jan I got a call from the PT to see how we were doing and if there was anything she could help with. It was wonderful to know just how caring this EI team were. We arranged a time for her to see Hannah when the new term began.

For that first year Hannah had home visits where we’d look forward to seeing what on earth the PT would bring out of her little car into our house. We lived in a small workers cottage and she would arrive with a variety of toys and other things (like an old tyre). She was fantastic at looking around our house for things that could be used and obsessed with beads and sensory play.

As Hannah was bigger now we also started to go to ‘group’ in the EI classroom. Being family centred I took the twins and my MIL with me – it was so much fun!! There the PT ran a ‘group’ with the speech and occupational therapists. We sang ‘Guess who’s hiding down in the box...’ as each child got to’ lift the lid’ on frog in a box so many times but I still love it!! We read Dear Zoo again so many times I was hearing it in my sleep. We signed and smiled and encouraged and watched the kids grow and blossom. Hannah was in group with two other kids with special needs. They were an awesome trio – well matched and complementary to each other – and we parents all got along well too. It really was fun.

The organisation also ran a short course called ‘After the diagnosis’ with a social worker – I went and along with other parents we discussed our experiences and particular concerns related to having a child with special needs. The following year they ran a Hanen course which I attended and that too was very worthwhile in building up ideas for facilitating longer and significant communications with Hannah.

We went to some lovely Christmas parties, attended fundraisers and the twins were able to enjoy Music Therapy a couple of times – which Hannah really LOVED. Her first music therapy was very young – in a session with just her and Kit and then a year or so later she was able to participate in a group session based on the Sing and Grow programme.

Informally at group we saw first hand loads of strategies being employed that we too would then go on and copy. If parenting a child with special needs means a post grad in parenting – then our first classes happened here. After group time the kids all work at different ‘stations’ playing games, completing puzzles, learning basic literacy and numeracy, doing craft and other activities – all under the supervision of a speech therapist, occupational therapist, special education teacher, and physical therapist – or a combination of these specialists as well as with their parents – watching, learning and helping.

When it was time to return to work part time I applied to a community childcare centre. Once again the EI team were very helpful and supportive. The PT visited the babies room a couple of times to help give staff some ideas on how to best help support Hannah’s development. When she moved up a room her current teachers also visited to offer some help so that Hannah’s development could be maximised in this inclusive environment.
In our third year of EI Hannah continued in group with the same kids but a change in therapists. She now didn’t see the PT as much and instead was seen by the spec ed teacher and a new speech therapist. Both these women were fantastic and very good at including Kit and using him as a ‘typical’ role model for the other kids – which was important for our family as I wanted him to stay involved as much as possible.

Hannah also began to receive some one on one sessions with alternatively a speech therapist and a special education teacher. These were tricky to build into our day – I had to drive in a different direction from home to drop Kit in at LDC before doubling back past our home to take Hannah to her EI session. Once it was over I had to go back to LDC to drop her off and then hare back, past the EI centre to get to work on time. Arriving just in the nick of time for my first class – I often went straight to the classroom – no time to even call in at the staffroom and check the emails first. It was worth it though. I really appreciated the time given by those staff.

When the twins were 4 we felt it was time to enrol them in a mainstream preschool program in order to prepare them for kindy in 2010. Once again an EI teacher attended the planning meeting and then throughout the year a team member also visited the preschool – this was very important as the teacher did not receive any particular support to help her work with Hannah and assist her development appropriate to her special needs. The EI teacher was able to offer her professional advice – teacher to teacher which I know was appreciated.

In our final year at EI Kit and I waved goodbye to Hannah as she began group on a different day with a different group of kids and different staff. She now had 3 therapists there: a spec ed teacher, OT and ST – all quite new to her plus up to 6 other kids also pretty new to her. She loved it. When Kit and I picked her up she was always happy and tried to tell us what she’d been up to. She particularly liked one of the books they read – Mouse Mess.

This year was our most stressful as a family since the heart surgery at the very start. We had psychometric assessments to do and a school to find for the kids for next year. It wasn’t easy – the EI team were there to listen to our experiences and offer support and advice. They held an information evening too that was helpful. The special ed teacher came with us to school meetings – an invaluable support which we will always appreciate.

At the same time it was obvious that Hannah required some individual therapy sessions. Our family arranged some private ST sessions as these were our priority and once again EI managed tight resources and time constraints to provide fortnightly therapy sessions with an OT and Spec ed teacher. All of which helped to consolidate Hannah’s learning and also provided me with some modelled ideas on how to further work with Hannah.

So now we are approaching our last weeks with this EI team. It is no wonder that I feel both sad and happy. It is wonderful to see just how far Hannah (and her family) have come from those very early days. She LOVES the idea of school and learning thanks largely to her positive experiences at EI. It is also a bit scary to be ‘going it alone’ as we have felt that in learning to advocate for our daughter – the EI team has been there to support and guide us.

We wish everyone in the EI team all the very best for the future and wish to let them know that we really benefitted as a family from your work and efforts in ways that will be felt and seen in our home and hopefully in the twin’s school journey for years to come. Thank you very much – God bless. In fact I have rejoined the cooperative in order to access School Aged Services – the next step on our family’s journey has begun.

Tuesday, December 1, 2009

Today's meeting went well. It took about 2 hours. I then had to do a mad dasht o get Hannah over the odther side of twon to the opthamologist - a feat we achieved (just) so I think maybe God was really on my side today. Must remember that in my prayers!

So - the meeting - present were Han's EI special Ed teacher, myself, the principal, the school's spec ed teacher and the 2 kindy teachers. The regional person who I have spoken with before and liked was not able to make it.

The EI and I outlined what Han is up to - her strengths as well as some of her weaker areas. The teachers asked questions. We set 5 goals for Hannah - things like - she will be able to write 'Han', recognise the symbols for 1-5, use visual supports in class setting, approach peers and play alongside them. I think there was 1 more -- ??? The principal took notes.

I had given the teachers a 'profile' of Hannah as well as a couple of other things (I hadn't wanted to appear too pushy- so just a couple of key things - including a 'letter' written in Han's voice that could be used to explain to her peers and their parents about her - plus a few 'myths' about DS - to answer some common questions that they may have). The Principal thinks it would be good to give a copy to the parents.

We discussed strategies for expaining to the other kids - I'll see what i can find and we might look at Victoria's Day Out. The spec ed teacher felt it was important to talk with all the staff about Han - the principal thought that perhaps myself and someone from EI could talk at a staff meeting next year.

We discussed expectations related to behaviour - eg attention span, sitting in group for extended periods of time - and discussed how to deal with difficulties that she may have with that - eg using an eggtimer to 'stretch' her but then allowing her to go and do a more favoured activity if she has been attending well for her 'limit'. I gave the school a copy of 'common makaton' signs for the classroom - as discussed with one of the kindy teachers at orientation.

How these things might impact on Kit was raised and also the issue of the playground - so the plan is to put out a few toys like dolls etc for the start of the year so she has something to 'do' also using the library was discussed which is a good option in the heat of Feb. I think. Agreement seemed to be that the computer (which she loves) could be used as a'reward' for Hannah. We spoke about what to do with her if she falls asleep (as I am sure she will do at some stage at the start) in the afternoon on the floor somewhere.

We also discussed resources - I have access to 2 good libraries - thorugh DSA NSW and the EI provider. I need to see if there is a way the teachers can use or find resources directly without having to rely on me. We ahve 'pencilled in' a meeting in Week 4 of Term 1 - with a view to organising 2 meetings a term to see how things are going.

My Actions:Make a 'pecs' folder and leave it at the school before end of term this year.
Find Victoria's Day and any others to leave for the teachers to have a look at (I have copies of these)by Term 1 2010
Make a booklet based on others about DS - that can be used as part of a lesson with the children. By Term 1 2010
Prepare what I might say to the staff at the school about Hannah - by term 1 2010.

Smile!! I was very impressed with everyone at the meeting - walked out totally agreeing with our EI teacher who said "I think you've made the right choice'. Yes I think so too. I know it won't be easy - but it is possible and it might be fun!

As the meeting ended - I gave them my copy of Win-Win Advice for the Inclusive Classroom to read - I had stuck in a photo of Hannah in her school uniform - it made them smile. I hope they find it helpful and inspiring too.