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.

Shoes

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!

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.

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.

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.

glasses

Bugger - lost her glasses today. I didn't have my mobile with me. Her teachers were phoning to see if she had them on this morning - of course she did! Little bugger - her teachers and all the other kids looked - but no luck yet. Expecting the unexpected - isn't that what all kids do? She's been os good at keeping them on that none of us thought about it anymore - one pair of expensive and necessary glasses - last seen at morning tea - or about 11am. Hope they find them!

School Support

I attended a meeting tonight with our EI provider - it is a private org although gov funded and non profit. They have a programme to help kids with sepcial needs in school settings - well to help their families and offer support in parents' negotiations with schools and advocacy roles. It sounds quite good - expensive although I know they are flexible on fees for those in need. I walked out of the meeting feeling empowered - I am already feeling that the school is open to positively supporting Hannah's education albeit they don't have a lot of funding/resources or even experience etc and this programme can help them in helping us achieve set goals for Hannah. Next year is still looking so rosy to me - I sometimes wonder when the bubble will burst. We all know it isn't going to be easy - but at the moment I have the sense that it is all hands on deck - we are on Hannah's team. It's a good team.

Planning the planning meeting

I got a call from the principal today - to try and set up a planning meeting for Han next week. She is keen to include her EI spec ed teacher - let's hope that we can all be there for it. The main issues I think we need to have a plan for are:
- communication (I will try and laminate afew key signs posters for the room) and bring the pecs folder I have been developing. I also will need to establish email (or an alternative) communication with the school - and also for the ST who I am hoping will be able to come into the school once a week to work with Hannah (from about half way through term 1).
- social - Han has great play skills (I see them when she plays at home with Kit - and she is fine with older children but she tends to lack confidence with her peers. She will need some specific opportunities to interact with them and in particular to flow on class group activities to the playground. I think this needs to be a priority cos 'patterns' establish for all thekids pretty early in terms of who is their friend and who they play with at lunch and recess - I don't want Hannah to miss out.
- motor skills - Hannah may need adjusted scissors to be available. I also need to know any other skills in this are athat I can work on over the long Christmas break.
Hannah's gross motor aren't up to her peers but she does manage pretty well. We could help improve her ball skills but i'm not sure what else?
- literacy - Han loves 'reading' and can recognise her name as well as everyone elses in the family. She also recognises some other simple ones like I and can and like. We use the same phonics programme and Han can say and recognise quite a good number of them. From a speech point of view she can imitate or sound out the ones a typically developing 3 year old can.
- numeracy - Han LOVES counting. She needs to be reminded to slow down. We are refining her 1-10 - she knows it but needs massed practice to be able to use her knowledge quickly and 'automatically'.
- self help - Han is great on this. Fully toilet trained, self sufficient with food and follows routine well and is able to follow 2 step directions pretty well.

I'll have to give some thought as to what resources I have that may be helpful for her teachers - I don't want to just 'dump' stuff on them but if I have material that might help I want to share.

Not sure whether they want to cover my involvement in the class at this meeting or leave it to whent hey address it with all the other parents as they recruit volunteers from all the parents. I can't think of anything else that we'll need to cover - I'll try ad remeber to take notes so I can refer back to what we discuss and agreed upon.

I'm looking forward to a practical and caring, realistic approach - fingers crossed!

Done - what's next?

I rang the 'other school' today to let them know that we wouldn't be sending the twins there next year. I felt a bit sad just cos they'd really been so welcoming but still I feel that the decision we've made is the right one for now. The princiapl was lovely of course.

I haven't heard from the school they are going to yet - I expect to have another meeting re Hannah's transition soon. I am glad that her ST is open to visiting the school and having Han withdrawn for ST each week for half an hour. I need to tee it up with the school. If I don't hear from them soon I guess I'll have to give them a call. Han's speech is really coming along well and has inthe past 3 months. Still I feel we can't give up - it is only improving due to the drill and practice that we have been giving her.

I am starting to wonder about uniforms - when is the optimal time to buy - especially school shoes? I don't want to go too early sos those little feet'll keep growing - but I also don't want to have both brats in a shopping nightmare at peak time. Will pick up Hannah's new orthotics and go talk to the local shoe shop...

Kindy orientation at our preferred school went better than I had hoped. It was great. We were greeted by some students. Teachers came up and chatted to us. There was a welcoming feel and I don't think any parent could have felt 'lost' in the corwd - it was very well organised and although catholic schools do tend to have larger class sizes - they had split the new kindys into 2 groups over 2 days so the children could bbe individually observed more effectively.

The principal spoke to the new parents about school stuff - everyday organisational issues as well as providing an overview of the various programs available and the curriculum followed. As she spoke mentioning withdrawing kids for different things - I though of Hannah and her private ST sessions.

Last visit our ST gave us a standard letter - just getting us to think about what we may need from her as Hannah prepares for school and then next year - as starting kindy is very tiring. I don't know that she is that keen on withdrawing kids but given han's speech needs I think that it might just be a great way to continue the intensive sort of therapy that Han needs until she settles in and has greater energy for the arduous school day. I mentioned it to both the kindy teacher and the principal and both were keen for me to organise that - so I'll certainly discuss it with our ST at her next session. I also hope that just as I learn by observing Han in speech - so might her school teachers informally gain a little professional training - not that I am expecting them to do a lot of specific follow up on speech therapy - but they might be able to adapt some of the strategies in the classroom.

I showed them the homemade folder of pics we use (pecs) and they were keen to have a copy - I stil want them to let me know of ones that are particuarly useful to them - but I loved the enthusiasm evident. I gave them a copy of our current ISFP goals, a hannah's profile - which detialed her strengths, supports I thought she'd need, my concerns, info about others who work with her, Contact agencies for help and Resources. I also gave a revamped letter - which is basically pitching how to explain DS to her peers plus some simple DS Myth/fact material.

There were a million different forms to fill in. I hate forms!! and with twins - it is the one aspect that is definitely 'double trouble'.

I liked the fact that at the end of the teachers observations 2 teachers aids and one of the kindy teachers approached me to talk about how Han had gone - and I really liked the fact that the kindy teacher mentioned how Kit had gone too - cos although I angst a lot more over Hannah in formal education - he is my baby and I want to know how he is too. he is a very bright little boy - quite advanced emotionally, verbally and socially amongst his peers. He already enjoys working out simple multiplication and division. He prepares powerpoints to help Han with ehr talking using clipart correctly. He's going to love school - I want him to be challenged appropriately.

Before we left we handed in our wad of forms and bought - the school bag and hat. Hannah was so excited she put hers on straight away.

Nuffield

Have been doing a lot more drill type speech activities - often with hannah. She is amazing - so tired but still complying as she yawns through just '2 more' sheets. I think it is already helping a bit. Drill and practise - seems to be the key strategy that works for her -as well as using as many visuals/cues as I can.

So she is doing great on the drillsheets - bee/bow and boy/bow. She has almost mastered pea/bee/me. Still working on two/tea/tie and bee/knee/dee. With Ants in the Apple I have been getting her to 'slow down' so that she is being drilled in 'possums peeping' and 'apple' rather than getting away with 'po, pee' and 'pple' which she has been doing a lot of the time. Her use of the individual sounds in Ants is pretty good on the ones we have been doing - a, b, l, k, h, o, u, d, n etc.

We ready Maisy Big, Maisy Small - and I have been clapping out 'Mai/sy' so that she pronounces both parts of the name. Then trying to get her to say all parts of the describing words - like 'Maisy spots' and 'Maisy wet'

Her ST has done some powerpoints - one of action words where I have been emphasising (using cued articulation) the 'ing' sound at the end of the word - trying to help it sound more rhythymic for Hannah. There is also an 'f' word one which she is doing better on and a end sounds one which she has really improved on some of them - to the point where she doens't need to 'fix it up' after a couple of them - like 'be-d' and 'ba-g' or slee-p etc. I also made up a presentation story for her - took photoes of Hannah with an apple - for I am: getting, holding, washing, cutting, eating which she really enjoys doing.

On the weekend she was playing with lego - which she loves - and I worked out that she was telling me that she'd made a robot - although her approximation was more like 'obo' which is very hard to work out without context!! Today she came in carrying a box of made up lego - to show me what she'd made and much more clearly she said 'ro-bot' Yay!! so it seems (fingers crossed) that this is the way to go with her. It is a pot pourri of strategies - I use signed english, cued articulation, signs, pecs and anything else I can think of - but it is working.

She has also been practising her piano - just her right hand but she understands what to do - and needs to just practise so that she can get more fluent. Adding in the left hand was just too much for her - next year.

On the health front - T and A surgery happens on the second day of kindy - a bugger but hopefully it will help maximise her potential at school so worth it in the long term.

Dyspraxia

We haven't had an assessment done - as this diagnosis brings no funding I don't see the point of one - but the ST thinks that is what we are dealing with - she mentioned that we are already doing lots of strategies that are appropriate. I have been reading up on it. From what I have gathered I think we are talking about verbal dyspraxia. DSANSW has mentioned a workshop being held nearby next week - I wonder if I could convince DH to go to it? I can't cos I have to take a day off work as it is for kindy orientation.

I am still trying to grasp what the implications of it might be.

Orientation

Well we had a our practice run yesterday. This sint' the school where I am thinking I'll send the brats - but it is a good one and it is our current back up plan if things go horribly wrong at the other school next month.

Hannah seemed very happy and a bit excited to be in the playground. She wandered around freely and obviously wanted to 'run'. Discovered the bubblers - which she loved and can use easily. Kit found a little bo he knew who started to play hopscotch - so the twins joined in for a bit (They don't really know how to play it - except for an older boy at after school care last term who taught Kit a bit).

The kids were asked to hold hands - Hannah went up to a little girl she didn't know and held her hand - unfortunately the little girl looked at her like a weirdo and so Han looked around for someone else - and then the teacher asked to hold another little boy's hand and off they went - upstairs to the kindy rooms.

I followed the other parents to the hall for a talk and some Q and A. I have to say that I was impressed with the three key selling points that the president of the Pand C gave - we encourage our kids to be independent and courageous/risktakers. We promote acceptance of difference - and she mentioned diffeerent ethnic backgrounds and socio economic circumstances as examples. All good, I like that.

The AP mentioned that they currently had 22 kids in each of hte kindy classes plua her class was a composite - of grade 1 and kindy - 17 kids, 3 with special needs and a teachers aid too. Then she said something that made me thinkt hose kids with special needs would be put in other classes next year - so I asked whether that would continue for next years intake. She looked at me quizzically so I clarified that I was Hannah's Mum. The response I got was that she would be 'fully integrated' so I still don't really know!!! It is a reg school with no special units - one ofhte reasons we applied there - they don't really have any alternative options do they? So I don't know - and I guess as DH said they probably don't yet either - until the meet all the children, do their observations and have a clearer idea of 'real' students - those who will attend there next year.

Anyhow that is one fo the things that I find disconcerting about this place - I think they have started trying to train me to 'let go of the apron strings' and let them get on with it already. And I am not sure I like it - although I am probably crazy not to want to just relinquish her to their lovig care and expertise and be done with it.

At the end Hannah found me in the hall and came running over happily calling my name. When I asked her what she had been doing she told me using words and signs - she'd sung 'incy wincy spider' and yes she had had a good time.

Then in the afternoon she had her private ST session. It looks like we are dealing with dyspraxia when it comes to her speech - and the ST didn't say 'mild' she simply told me that it varies from mild to severe - so I'm guessing that Han might be in the 'moderate' range - otherwise she would have hastened to tell me that Han's was pretty mild wouldn't she??

Pecs

After our interview with the primary school (which included the area school support coordinator and our EI special ed teacher) it was decided to investigate assisting Hannah's communication with a visual system. I spoke with her ST and we are now using pictures from PECS to help increase Hannah's utterance length and to encourage her to attempt more words - using the pictures to assist the listener understand just what word she is saying if her clarity is not adequate.

Today I am home with Kit who is sick -so I got the laminator out and put some thought into next week's kindy orientation. I have met the kindy teachers but haven't actually spoken to them specifically about Hannah. According to the letter - the kindy teachers take the children for 'activities' and the principal takes the parents - no doubt for a good 'talking to!"!!! lol.

So - Hannah has a keychain tag that she can put through the loophole of her jeans - she has it for preschool but I doubt that she uses it much - she can manage the communications on it without using the visuals or for some like 'Can I play' really needs an adult to help her use it with her peers - or it just wouldn't be used. Anyhow I think that it is a good idea and perhaps a new start in a kindy with some aid time might revive it - so I added a few visuals - My name is Hannah, sad, happy, tired, I like and I don't like. I hope it is enough to get her started at orientation.

I also did some more pics that might be useful like toilet routine, assembly, school bag, body bits, shapes, and a few others. They go in a homeade pecs book - I will wait and chat to the teachers though before I give that one to Hannah to use - it is more a tool for them to govern the use of but I must say that the sentence strip idea is really helping.

Time to put up some sightwords around the house too. After that I want to work on a Hannah Profile -a one page summary of just what she can do at the moment and any 'this works...' type of stuff so the teachers have an overview. I also have a letter explaining DS that I gave the preschool teacher with the view that if we felt it necessary it could be given to the parents too - it wasn't necessary - I think cos the kids were all a bit young. Still if she is going to be the only child in the school with DS I might revisit it and have a copy ready for the teachers - to use if need be. Any ideas on how to distribute such a letter if we do decide to use it?? It is basically an "I'm the same as you but learn some things more slowly ' type of letter and on the back were a few 'common myths' Q and A material I got from DSAssociation including what I think is a subtle lesson not to refer to her as a 'downs'. First some afternoon tea though.

Progress

The twins are back for the last term of the year. They were obviously happy to return to their routine. The preschool teacher commented on what a good day Hannah had had. She commented that Han had used a few new words - and that she had been able to understand them as her speech is getting clearer (YAY!!). Also she has put up sight words in the classroom - labels on the furniture. Well one boy noticed them and soon all the kids were looking at them and the teacher was talking to them about first sound and the next sound etc for recognising 'what word'. Hannah got one - House. Then the teacher got her to go and put the word on the dolls house in the room. Good work Hannah!! And good work Mrs S - this teacher has had no extra support in including Han in her class of 20 'regular' kids - except for the visit I arranged with Han's EI teacher. I think she provides a great program and given her lack of resources has done a great job with hannah.

Preschool has helped prepare Hannah for inclusive kindy - she has had to cope with 19 other 4-5 year olds en masse - not the easiest thing for her - but she has done it. She likes going to preschool. When I showed her a photo of her class and asked which kids she wanted to come to her party - she said very clearly - "everyone!" so even though she can be a isolated (from our perspective) and doesn't have any special friends there - she is accepted by the other children and sees herself as just part of the group.

I am taking her to orientation of the school we probably won't go to next week - just in case. ALso it is probably good practise to give her a few opportunities to see what 'big school' will be like.

Pianorama

When the twins were little I used to walk up to our local shopping centre regularly with them. Ond day a tall woman with long black hair had set up a table in our suburban centre peddling her music school. On a whim I approached her. Now my family LOVE music - always have. I can't sing a note and tried but failed to learn the guitar as a teenager. DH loves music too - and he actually can play guitar and at the moment enjoys writing lyrics and music too. He has a few other friends he plays with for fun and has been in the 'work band'. I didn't know anything about ways of teaching music except what I had read in a book about Ellie - a young girl with DS whose Mum got her lessons in the 'suzuki method' to help her learn the piano. I had by this time learned about the wonderful Sujeet Desai too - so I knew it was very 'doable' but wasn't sure of the 'how' - besides they were very young.

Miss M was lovely. When I asked specifically whether it would be ok for Hannah - she said someting along the lines of "What is DS?" I explained a bit about her low muscle tone and speech delay. "Nevermind I'm sure she'll be fine. We have other kids with special needs like autism. We'll learn as we go." "Yep, she'll be fine." - or at least those snatches of our conversation linger in my memory. She was right on all counts - it was fine and we all learnt as we went along.

Now there was Beeboppers for 2 year olds - with lots of movement and percussion and Jitterbugs for 3 year olds which was more of the same really with the addition of the 'music house' for beginning to read music/rhythm. I still recall the day DH took the brats to music cos I had changed the class to Saturdays for a semester - he came out flabbergasted - I'd told him - but seeing it was quite different. She really was one of the best in the class. She LOVED the movement and the singing and the actions used in the songs. She had a ball.

This year at 4 they started Pianorama - now it is trickier. She isn't the 'best' in the class by a long shot. She still has fun and enjoys it. There is still movement and actions which she manages well. There is percussion too. They are also learning to 'read' music - she can recognise 'doh'. They are learning the keyboard - now Han can play with her right hand (Mrs Treble Clef) adequately - it requires a lot of fine motor skills to isolate each finger to play doh, reh, mi, fa, soh. But she gets it and tries her best. The left hand is harder for her to get the necessary control and strength to play with but she gives that a go with occassional success. Just now at the end of the year they are beginning to use both hands together - she doesn't really get that yet at all. Regularly each child stands in front of the group and says "My name is xxx, and I'm going to play yyy." and then they 'solo' a song they have been learning - Hannah LOVES to solo.

The classes have always had a rapid pace that she has had to work to keep up with but she generally manages that well. She is learning and developing - oral skills, motor skills, concentration, listening, reading and counting to name a few. Still it is sometimes hard to watch her have to 'fit in' all the time to work so hard to 'keep up' with the regualr kids. Recently they had their first 'concert performance'. She and her brother were really excited and did beautifully. DH and I LOVED watching them. I snuck up on stage to kneel beside Hannah to 'help' her with the 'Mr Bass Clef' bits.

The following week I spoke to Miss M about next year. DH and I had been discussing it. We really want her to be able to continue as we can see her learning so much from it - but at the same time we can see that she will keep falling behind her typical peers. We discussed the option of getting her private lessons if necessary - one of their former music teachers has been on mat leave - perhaps she'd be ready to work with Hannah using something like what they already do but modified a bit for her? The drawback of that was she actually benefits from the group stuff - and a lot of the activities are designed for small groups - I decided to discuss it with Miss M.

When I approached her the twins were in the middle of their lesson with Miss A and Miss M was doing paperwork at the front desk that is in the classroom. "I was just thinking about that!" she said when I approached her. Anyways the decision is for the twins to have back to back lessons on a Saturday - Kit to go to level 2 book and Hannah to stay on Level 1 book. Miss M says it will be different songs etc so she won't be just 'repeating' the current book although the skills they teach will be the same.

We'll see what happens from there - but what I am happy about is that we got to that point. From 'what is ds?' to the teacher knowing Hannah, seeing her strengths and weaknesses clearly and coming up with a plan on how to best meet those needs. Fantastic - that is what I hope will happen at school too - cos I do have a wee concern that the princiapl doesn't really beleive Han will 'cope' there for very long - yet I know of other kids who have been able to stay in a mainstream class for all of primary - if the school thinks like Miss M does then that may just be 'doable' too!
Here's the address for our music classes http://www.ismaustralia.com/

Specs4us

I think everyone should have their child's eyes checked before they start school. Kit has had his tested twice in gov't funded programmes for preschoolers. Hannnah has seen an opthamologist before so for her it was a case of follow up. Specs4us make frames designed with some of the facial features of kids with DS in mind - apparently lots of 'typical' kids specs are too big for hteir little faces or keep sliding down their face cos of the shape of their nose bridge. There are not many places that have them in Aust - they are US made but Edgecliff Eyes has just started stocking them - lucky for us. Anyways she has only had them for half a day - so far so good!

Letters and experiments

Well our offer of enrolment letters came today. I was pleased that Hannah's was identical to Kit's with the exception of 'Please read the "conditions of Enrolment" sheet enclosed' ... which had been replaced with a more specific paragraph that referred to regular reviews of adjusted curriculum to meet Hannah's needs, that she'd be in a mainstream class with other students who also required support and that our ongoing support in the classroom would help her successful integration and provide support for her learning.

So I am happy with that - it was positive (mostly) and reflected the discussions we have been having with the school. Orientation happens next term and I will use that time to investigate specific individual orientation activities that may help Hannah.

Little brat will be getting glasses to wear from tomorrow. Her opthamologist noticed that her right eye is 'turning' a bit - she thinks it will be able to be managed quite well with glasses - so fingers crossed! I'll try and psot a picture cos she sure looks cute in them.

There is also a research experiment that I am hoping to participate in - literacy and numeracy - Hannah would be randomly assigned to one or the other. It requires me to attend 8 training sessions though - so I have written up a proposal for work as I can't afford to lose pay. I am lucky that as a social science teacher - a large part of my course relates to research methods - I can (possibly) justify it as professional development. Also we should have stopped formal teaching for the bulk of it so it will only affect 2 (hopefully!) afternoons where I will need to leave lessons for my students. Also I am not asking the school to cover any additional expenses and I have offered to share what I learn with other staff in my faculty. Fingers crossed I think it would be fun, may help Hannah and should help me in my work too.

Puzzles

If you follow this link [ http://shamptons.blogspot.com/2009/05/another-part-of-puzze.html ]to an earlier ost on shamptons you can see the farce that is reality v notions.

Today was the brats first day at after school care and given my previous conversations with the person in charge there - I was quite nervous. Yelling at hte kids to find Hannah's 'talking tags' - as I call the auslan pics she has attached to her waist on a keychain to help with communication at preschool. I thought it might allay the fears of hte after school care workers. It wasn't to be found anywhere - so I took them off to preschool all dressed up in their animal safari glory without it.

They looked gorgeous in their costumes. We passed lots of kids in animal outfits on their way tot he school and the opther preschoolers when we got there were very excited. Hannah was overwhelmed. Poor love - it broke my heart. Eventually I went and hid just outside the door as I know that sometimes hanging around feeling terrified for her just gives her an opportunity to avoid going along with the class. Anyways it worked although she was still abit upset she did go and line up with the others and hold Kit's hand. I was worried - this would just exhaust ehr and then she had her first after school care experience - and I really wanted her to make a good impression. (I know that sounds silly - but given everything we have been through this year in terms of getting people to see past her disability perhaps it isn't as crazy as it sounds now as I type it!). I felt sick. I didn't go to work. I worried all day. I cleaned up a bit and did a grocery shop, found her 'talking tag' and laminated some new pics just in case they might be useful next week and as soon as I could acceptably go there - I went to pick them up.

Well - they were on the other side of the school. Kit was sitting with an adult and a few other kids watching a lot of boys play football - he was taking it all in as he does. Cautiously assessing the situation and seeing who he could make friends with. Hannah was in the hall - dancing. The carer was very happy with how she'd gone and as I hoped a little girl (Olivia) had taken her under her wing - and had asked the carer if she could look after Hannah each week while she was there. She had a ball. I asked about the talking tag - they'd been lent the preschool teacher's copy - but no - no need for that I was told. Clearly Han had managed to take her queue from the other kids very successfully. I was very proud of her. I know she is looking forward to going again next week.

Progress

Today Hannah had an individual session with her special ed teacher - it is great to see how much she has progressed - and how she is starting to get some of the numeracy and literacy concepts we have been working on. Her SpEd teacher is great - very comitted - we are lucky to have her. Anyways - Han was matching die spots with the written numeral up to 8 quite well. She 'read' simple sentences such as My name is Hannah. I am a girl. I am 4 years old. She also dis some counting and reading ina great little resource that I plan on googling later on - How Many? 2 shoes, 3 pigs etc - it uses velcro for her to select the correct ones to attach to the different pages. She did a fantastic version of This old Man - I still recall one fohte teachers at Uni commenting on how teaching rhyming to our kids is really hard - well if there is any chance they'll get it - I can see that this song using simple pictures and the corresponding numerals will surely do it! They also read Kit and I a wonderful story book - Mouse Mess - which clearly Hannah loves so I will have to see if I can buy it locally. She attends morning EI playgroup which Kit and I don't stay for - when we were driving home she told me that she had read a book and when I asked which one she said 'Mou Mea' which I was totally at a loss to interpret - but then this afternoon the penny dropped - Mouse Mess - yep definitely one for the library if I can get it. Some great work - but also some naughty behaviour - as has been seen at preschool this past couple of weeks - falling to the ground and refusing to move - hope that one doens't last.

Decided - I think!

We have let the old school of choice know our decision. It is still our preferred option. They are very blunt about how inclusion will look for Hannah. The principal mentioned her concerns and some of the other negatives too. We talked about strategies to help Hannah in that setting. Then we went away and drew up a comparative table of pros and cons. 1 school had 7 pros the other 9. Both had 5 'cons' - one of which was 'recorders' which are taught at both schools. So not that much between them really - 2 good schools.

Negatives and positives
2 classes in open plan setting - 58 kids, 2 teachers
Hannah's speech is very unclear, she is less 'mature' than her peers in that she parallel plays (unless she is at home). We also discussed her reaching the toilet seat - will need a step in the kindy toilet. They were pleased to hear that her stability when walking is getting better all the time as there are steps down to the playground. Eating isn't a problem as we have sorted out containers that she can open for herself. There are other kids with 'special' needs in the class (including language delay and some social/agro issues) - this was presented as a negative in that this would further reduce the teachers' time available for individually helping Hannah - yet for us it was also a positive - teachers might be able to share strategies with these kids that also work with Han and she might not stand out so much as she could if she was the 'only one' the 'sore thumb' in the class with additional needs. The other positives came from the organisation's supporting officer who seemed very professional and supportive (of the principal and inclusion). Forseeable situations were stated and strategies to deal with them were discussed - like keeping Han on task in a whole class activity - eg when the teacher is reading from a book or presenting to the whole class in a group on the floor - how to stop Han losing interest and wandering off around the room. Her speech is very unclear - how to best support her communication? I will be asking her EI and her private ST for recomendations on this but basically some sort of visuals - maybe pecs or something? As well as that I will be able to help out one morning a week as part of the parent volunteer program - something I'd like to be able to do regardless of Hannah's additional needs. Hannah will also automatically have an IEP drawn up (this is not automatic int he government system for kids with 'mild intellectual disabilities' although I am sure I could request one and I definitely would! It also means that each 6 months there will be a meeting to discuss how the goals set are going - I hope that process works for us and not against us - I have heard where it can be used to 'move a student on' if the school feels it isn't working - yet I also know that that isn't the philosphy behind them and I can't deal with the school always expecting the negative. We need to build a relationship together for the sake of the twins. I did ask for a communication book - as I don't want ot have to ask Kit what hannah did at school that day (The Dan Drinker Diaries really showed me how useful one could be) - and the principal was happy for that - so long as it doesn't prove burdensone for the teachers - she even suggested considering email - which would suit me (I use it myslef as a teacher too and prefer it). They also have a social skills program that explicitly teaches the kids these skills - each week.

Then there are the other considerations which are not essential but are nice nevertheless - it follows the religious beliefs and ethos that I support. The twins will have an education where religion isn't 'compartmentalised' as such but pervades through things easily. It is very close to their grandparents house - and they will be able to continue to be involved in the daily life of the brats. My MIL is very active in that parish and may even help out at the school too if she still has that inability to sit still that she has had ever since I have got to know her! She is a former primary school teacher and was a principal before she retired.

Added in as a bit of insurance is my own return to tertiary study - in special education. I think we are doing everything we can to make this work - but still like everything until we actually get there and see the dynamics of the group - there is no guarantee. I hope that there is some little group of girls - or just one girl - who will form a special attachment to Hannah - that would be magic.

We took Han's special ed teacher from EI with us - it was good to see the princiapl so open to her suggestions. It was good for us to have a 'supporter' there with us and a more neutral participant - her impression was that the principal was being very realistic in her expectations. She too saw the number of kids as a difficulty as Hannah may well end up 'lost' in the crowd.

The letter outlining their terms of acceptance hasn't arrived yet though - so who knows - I may change my mind again before the year is out! And so provided I don't do that just yet - it is now time to start looking at 'checklists' in preparing Hannah for school - mmmm - what to consider first?

Pushy

I have confessed on Shamptons to being a 'pushy' mum - no point denying it once I enrolled in a Masters of Special Education program specifically to do an early intervention unit! Anyhow - I completed a third of the course - and really enjoyed it too but just couldn't cope - emotionally and mentally with fitting the demands of study into an already packed schedule and the financial costs of sacrificing 2 weeks pay a year when we were finding money pretty tight - as well as the fees for the actual course - although to be fair that is heavily gov't subsidised - it still cost us money that we didn't really have. Given our leanings regarding schools for the brats next year I am hoping to stay part time for a year or two - and resuming some of that study. I rang up today - enrolment is in Sept. I am going to change to the Diploma programme which I can later change back to masters if I want - and so it means that next year I will be able to study a semester on Literacy and another on Numeracy - PERFECT! Just what I want to do. I will get credit for the other subject as I have already completed it as part of the masters course I was in. Looking forward to it! Bring in on!

Good day

Well I have just come back from a meeting with the school counsellor - I walked out feeling very positive even though we still probably won't get any additional funding for Han - she is going to try again as a 'special case' so fingers crossed. Regardless I left feeling good - something that rarely happens at the old 'school of choice'. I observed the kiddies playing together. Chatted with a mum I know who's son (with DS) will probably be starting there in a year or two. The teacher that will have Han was telling her about the lovely little girl with red hair that would be starting next year. Yep - that sounds like they are looking forward to having Hannah there! Fancy that... well no - that only surprises me cos the old 'school of choice' speaks like a lawyer every time - and clearly doesn't give the message that they would be LUCKY to have my daughter there - which seriously - they would be. She also recommended my friend start her little boy when he is 5 - so if he needed to repeat it could happen early. They are just so matter of fact about kids with disability. Very accepting. I watched a little girl with disability being greeted by another little boy when she arrived at school. It's small. They were all playing so wonderfully in the playground before the bell rang to go inside. The school counseller used to teach a class for children with mild intellectual disabilities which she raved about. Today I am really feeling good about entrusting my unique little girl to their loving care. A good day.

Checked out

Well the principal visted the LDC centre today. WHo knows what she made of it but the carers there tell me that Han was a 'model child' - I hope so. I have had that sick in the stomach feeling all day.

The ST's speech assessment came today - and based on it htere is some funding for Han - her receptive language has mild-moderate delay but it is her expressive that causes the most concern - and hence word structure too - it is hard to demonstrate a good understanding of tense when you still leave off end sounds etc.

Tomorrow I will go to see the school counsellor at the other school - I'd like to understand a bit better how they would be able to meet Han's individual needs - eg using visual aids in class, facilitating some social skills and peer interactions etc, and what the speech funding might actually mean in practical terms. At the bare minimum I am hoping that whichever school we end up at - they will make good use of a communication book for us - especially as Han has speech delay and I don't want to have to grill Kit about what his sister did at school that day. It will also help me work on similar things as they are doing at school. I am sure that I'll feel tense about tomorrow's meeting beforehand but this school is so pragmatic and welcoming of Han that I also feel positive about the meeting. DH reminded me just before of how when we went tothe open day and the principal didn't know us - and I asked about speical needs - she really shifted focus on what she was saying tothe whole group and ade it clear that they had special needs kids there 'but you wouldn't notice' and then talked about how they are accepted and assisted in the school. She didn't have to do that - it wasn't in the marketing spiel she was delivering - but she obviously has a genuine and inclusive attitude - now if only they didn't teach 'we're in the army now' to the kids on the recorder!!

Shall we dance the Fandango?

Got the call from the principal. She was obviously aware that the conversation with DH didn't go very well. Anyhow - I think that the aim of today's call was to try and encourage a more positive ambience for the scheduled meeting. Her focus seems to be on 'what can the school do' to meet Han's individual need, and some of the 'cons' like class size and teacher time, other kid's competing demands etc. Anyway - I still wish she'd request the conversation AFTER having said that Han could enrol in the school - cos that will impact on what we say - it is hard to view things as 'we are on the same team - let's come up with a plan' when half the team is jealously guarding the right to walk away from us and our beautiful Hannah. Still I really feel that here is our best chance of a school that matches our values, that is able to offer something of value to BOTH our kids. So fingers crossed.

Soon we will be attending a fundraiser there - let's hope it goes well and DH and the principal don't come to blows!

Running Scared

So I decided that it might be wise to see if Han's EI special education teacher could attend the interview witht he 'school of choice'. I rang and left a message to let the principal know - I don't want to ambush her but before we started at preschool we had a meeting with the AP, the school counsellor, the teacher, us and Han's EI Spec ed teacher - given that she is currently teaching Han in a transition to school program it seemed sensible.

I got a call from the school this afternoon - the principal will ring me tomorrow. I presume it is about that. Anyway I don't know whether it is giving her cause for concern or whether I should be nervous - I don't want to get her offside before the meeting has even occurred - I still hold some hope it might actually have a positive outcome. Fingers crossed.

Meanwhile Han's ST gave her a standardised test today - hasn't sent the results through yet but has said that her score is most likely going to be less than 70 which will bring with it for dept schools some funding.

Bumpy Road

Well DH rang the 'school of choice' yesterday - we are anxious to hear how the enrolment process is going. After speaking with the principal he wasn't especially reassured - we have arranged a meeting with her and the CEO support person - to discuss 'how to go forward' and what is in Han's 'best interests' - so any ideas - welcome! DH is getting pretty antsy - as he says - we rarely have a conversation where we come away feeling positive about things - so why are we persevering?

I don't know. Anyways I was feeling upset and had a bit of a cry and a rail against the unfairness of it all (funny how I just want to go and grab hannah and cuddle her to me forever away from prying judgemental eyes when that happens!) and then I picked myself up and went to collect the twins from LDC. There I am told that the principal is coming to look at Hannah next week - WTF?? So I must admit I gave it both barrels for a bit - I feel like I have been handing over Han for them to 'assess' like a bug under the microscope - I only do this in her best interests cos I understand she has additional needs and that she is an individual so I am glad they are looking at her specific issues and not just saying - Oh she has DS - they are 'dear little people'- but I thought that Han could make them see things more positively - that by observing her they might see what we see - Hannah's amazing resilience, her determination, her potential - and the reason why we want her in a mainstream class. I am not sure that is what is happening though - it feels as if she is a bug under the microscope and the face peering at her is scrunched up in distaste, fear and apprehension. I hate that that is what I have done to Hannah - that I have put her in that situation. She deserves so much more.

So where are we now on the bumpy road to school ... just bumping along through the long, stormy night I feel, wondering if we'll ever get there.

I did start to feel a bit better after the LDC staff told me that the principal is also coming on another day to look at some other kids - perhaps I need to be less paranoid, but then what about all the families that have already got their letter of acceptance - we haven't - so it isn't really a matter of our choice - it still lies with them. If they said 'yes' the brats are accepted for enrolment and then outlined how they saw their program catering for Hannah's special needs - then DH and I could consider the 'way forward' and 'Hannah's best interests' but as it stands - that still rests with the 'school of choice' no matter what they say.

Our Science Experiment

Han's IQ assessment finally arrived. It didn't tell us anything new - in fact the report of her actual assessment performance was less detailed than the verbal summary the spychologist gave us initally - because the typed one didn't include feedback on the individual subtests within the Wiipsi. The 'scool of choice' rang - just to ask for a release of information form. So one step closer but still waiting...
In the meantime there was a cancellation at the sleep clinic so I took Han in for a sleep study - it is good to have another - 'before she goes to school' medical appointment crossed off the 'todo' list. She was a very good girl - patient with all the wires and cooperative with the staff. There was one registrar who sort of raced into our room and immediately started looking for her simeon crease and brushfield spots - not that all kids with DS have them (and Han doens't have a definite SImeon crease)! Anyways she made a comment that I was 'a knowledgeable Mum' when I showed Hannah's hand creases to her - she was looking at her own hand and amazed that Han's handcreases looked the same as her own - I wanted to say a lot of things to her about her doctoring and patient skills - but I bit my tongue - just said that yep - regular people can also have a simeon crease. We haven't got the results yet.

Waiting

I'm hopeless at waiting. I blame my mother. I try and help Kit be better at waiting than I am. I hope I succeed.

Yesterday I felt a bit out of sorts all day - more as the day went on. In music I had to be 'teachers aid' to Hannah quite a lot as the lessons are getting a bit harder for her now. She still has fun but I was out of sorts - started to think resentfully of the other parents there - with their one typical child and here I am - no time to sit back and watch their achievements - I have to try and make Kit feel like I am watching him and ready to help him and I have to help Han actually get some of the activities done. I try to be as unobtrusive as possible. I know things aren't good when I start to have these sorts of thoughts. Once we were home I tried to make some pasta dough as I wanted the kids afternoon activity to be with the pasta maker - it didn't turn out... so I did what I had been avoiding - confronted why I was feeling grumpy. Lucky for me just as I was about to deal with it by taking the twins to the park a good friend asked us out to a local cafe with her kids so I was able to chat with her - and you know - anxiety shared is so much better to deal with!

So why was I out of sorts, grumpy and anxious? Silly I know but for the past two weeks I have been watching that letter box. Nothing. I am waiting on the report of the psychologist and pediatrician for Hannah's assessment. I know the summed up result - but I need to see what is actually there in black and white. This is the document which will 'sum her up' to many of those who read it. I want to know what it will say at the same time as I am resenting the need for any such report at all. As usual it won't bring any extra support (well is not likely to!) yet Hannah has to be 'put on show' summed up and found wanting yet again. I know as a teacher that what we say face to face tends to be more diplomatic and 'nicer' than what we might include in a written report - done without the pressure of anxious eyes watching. And so I worry. On Monday the ped rang me because she was trying to finalise the report so it could be sent out. So now I know that the last week's watching was in vain - this week's watching and waiting for the postie continues - I hope it comes today. I want to open it, read it, be done with it.

On Thursday the principal and special ed support person (I really must find out her proper title if the kids go to school in that system) from my preferred school are going to go and stare at Hannah while she is at preschool. Measuring, evaluating - found wanting. Oh I know it is good that they are that interested and that it bodes well for them preparing well for her transition to school but still it hurts. I wish it didn't have to be this way.

On a more positve note I did get in Monday's post a lovely parcel of books from the DSA on inclusive education - these both scare me and give me hope - depending on my mood.

Pity Party

I thought I'd better add in a couple of details in the interests of accuracy for the view from the back of the queue - as DH pointed out to me - the 'school of choice' did make an appointment to visit Han at her preschool earlier this month - one which we cancelled - so now we have to wait until they have been (sometime at the end of term I think). I hated cancelling it - it is the only 2 days Han has missed of preschool but she was just so sick poor love. So I still feel like I deserve a bit of sympathy - but he is quite right - the school have said all along that processing Han's application would take a bit longer and they have tried not to delay it - so SIGH I guess I just have to learn a bit more patience.

The View from the Back of the Queue

I took the brats swimming today - they are both in reg classes and loving it. Han has a ball but is going to be in the basic class for quite some time I think. I was chatting with one of the Mums there - her daughter attends the same childcare as the twins. She had applied to enrol her daughter at 3 of the local catholic schools. Anyways - she has been accepted into 2 of them - one the very nice, little bit fancy, very old fashioned one that serves my parish - with a rather terrible old crank of a parish priest and the other one which is the only one I applied to - our school of choice. It made me sad to think - that with her lovely blue eyed blonde haired 'normal' daughter - she has choices. She doesn't have to wait to hear if her daughter is going to be accepted. That is what it feels like I have to do. If I just had Kit - I'd be in her shoes - or if I had 2 'regular' twins. Instead I won't hear whether we have been accepted for at least another few weeks, probably longer. The view from the back of the queue is not that great - watching others amble on in while I have to wait to see if my daughter will 'pass' the test. They've seen her. They know the result of her IQ assessment. Still we must wait anxiously - it isn't fair. She has just as much right as this other little girl to be readily accepted. I wish she was.

The Verdict

I'm using Mark Selkowitz's book Down Syndrome The Facts to help here:
"People with IQs ranging from about 80-130 re considered to have normal intelligence.
An IQ of about 70 - 80 is regarded as demonstrating a borderline degree of intellectual impairment. Such peple usually manage in the normal stream, but have developed at between approximately 2/3rds to 4/5ths of the average rate of development.
Children and adults with an IQ score beow 70 are regarded as having an intellectual disability....t is therefore useful to describe intellectual disability according to its severity.
The following terms are usually used. In each case the eventual adult level of competence is described.
Mild intellectual disability
(IQ range from about 50 - 70) Adults with this degree of disability can usually live independently with little supervision.
Moderate intellectual disability
(IQ range from about 35-50) Adults with this degree of disability will need help with managing their financial affairs, and usually such activities as shopping, cooking and commuting.
Severe intellectual disability
(IQ range from 20 - 35)
Adults with this degree of disability always need a great deal of supervision, although this need not be constant, as many are able to care for themselves in matters such as dressing, eating, washing and toileting.
Profound intellectual disability
(IQ range below 20)
Adults with this degree of disability need constant care and supervision."
pp116-117

So Hannah clearly showed strength in her verbal reasoning skills - using words to solve problems - in some domains she scored in the 'borderline' category. Her non verbal reasoning (mathematical style deductions, puzzles etc) was not as strong and mostly scored in the mild range so that her overall IQ magic number (Which I don't know) falls in the mild intellectual disability group.

So overall it is great news - because it means that there is a lot of potential in her future - the ped says that clinically there is little movement between the ranges as the child grows older, if the first assessment feels 'right' and accurate - then there will probably be little or no change of statistical significance in later assessments.

The negative side of it all is as I feared. The psychologist was very good. She acknowledged Hannah's natural abilities, personality and talents as well as 'our efforts' and the EI Han has been receiving. The negative side of it is that yes - so much of what she can do is simply because of who she is but there is a heap that is a result of the help and therapies she has been receiving since she was 3 weeks old. The gov't slicing of the disability pie means that there will be minmal support and no targetted funding for Hannah - so I will have to watch anxiously to make sure that she can maintain her good performance with less support. I understand that there are others who require greater support - but an intellectual disability is just that and is different for each individual - targetted funding would help focus the type of support she could receive to best help her in the mainstream. Still I am not unhappy with today's results and will continue to lobby and advocate for the best for both my children as they prepare for the perilous quest into the mainstream next year...

Psychometric Take 2

The city is at her feet...
Well Take 2 happens tomorrow - I haven't done any coaching outside of - how old are you? But the little bugger insists on saying '4' (hey that is right - better than the '2' she gave as her answer last week!) but then she almost immediately goes on to 'birthday 5' - which isn't that clear given her speech but means what it says - "I'll be 5 next birthday'. SO I have been stressing that 'H" is the 'boss/teacher and Hannah must listen and use her words. Outside of that - let the dice fall I say - it doesn't change who she is. It is however the pink ribbon on the diagnosis - the labelling of the scary part of DS (once the near death stuff of OHS is out fo the way that is!!) - it is the measuring of the 'intelletual disability' - and in the verdict lies partially the summing oup of our dreams and hopes for ehr - her future poptential - her chance of independent living and her education options... Still - it doens't change a single thing about my beautiful daughter - it might make me sad for her but never about her. She is always who she is - and that is divine. A mystery so sweet that I thank God every day - and would I think reguardless of religion!
Walking up to the local shop I asked her yesterday what street she lived in - she named it correctly and then gave the number - so I know no matter what ehr formal assessment may indicate that not only is she school ready - she definitley has an ntelligence - why on earth would I start wanting her to have a mainstream intelligence now? There is nothing 'mainstream' about our house after all!

Psychometric Assessment

Well today I learned nothing and something... Kit had temperatures near 40 all weekend. I obviously caught his virus and was a babbling wreck who basically took to my bed and didn't leave it until this morning when we had to take Hannah for her IQ test. Kit had an appalling night as did DH as he was up to him constantly and that meant also that Hannah had quite a disjointed sleep and I have just given her some panadol as she was quite warm and sooky - a sure sign that things unsavoury are brewing.
Anyhoo ... drumroll... the jury is out. The best the psychologist would say is that her vocabulary is very good. Does any one know how significant or important that is? I don't. Anyways we are headed back next week and hopefully she'll be able to give Hannah a score she is more confident is reliable.

The ped. and the psch were really lovely - and the intro bit where they watch Hannah play and check us for the "How well do you know your child quiz' was actually quite fun - after all I am very proud of little brat and don't mind bragging! I did however say that she doesn't demonstrate bad behaviour and that it is quite easy to jolly her along or distract her. Famous last words - I think we lulled the psych into a false sense of security. Still although not measurable on the wppsi - I think you'd have to agree that there was some cunning there - she kept waggling her finger (sign) and saying 'finished' when she didn't like a game. She also wandered over to the climbing blocks so she could get a better view of her too cute self in the mirrored 2 way window (as her parent i just wanted to reach through that window and tell the little bugger to sit on her bottom!), then she discovered the light switch - that was a fun distraction. When doing the puzzles which she really liked and kept requesting more of - if one was too hard she'd ask for (sign) 'help' - guess they should have told her about standardised testing procedures earlier on. When the blocks were out and she had to mimic patterns in them etc - she kept wanting to build hers with the psychs - I'm sure she thought her new friend was a bit silly and selfish not to want to build something together. And finally, oh so sweetly - she clearly indicated that it was her turn to be teacher and switched the pages of the book around so that the tester became the tested. So yep - I learnt a lot about her sense of fun, her lovely interaction and charm - cos without bias you'd have to say she was a sweetie the whole time - there weren't any tantrums after all. She was also rather good at problem solving and could ask for help when necessary - so I think she is school ready.
I am assuming her scoring will be in the moderate intellectual disability range unless she really cleans up her act by next week. It isn't something that I am going to worry unduly about. They were nice women - I want their expert advice on where Hannah's strengths and weaknesses lie so I can use that to assist me in choosing the most appropriate place for her to commence school at next year.

I know an anywhere but here school...

Yup - well I rang that school that my friend had the interveiw for. Boy! here's the two quotes I am still steaming about:
"integration is ideal when it is feasible" - not my emphasis - ain't that a can'o'worms??? and
"I just wanted you to know that there is a light at the end of the tunnel after those 4 years" so - hmm - definitely not pro inclusion in kindy I guess.

What do I make of it? I was encouraged to come and have a look at the transition program. It is one that I know has a good reputation. How do I feel about her ringing the mag in response to my letter?

Well as my DH prophesied when I first told him - and how it surprised me given my friend's experience there - it's a marketing exercise. When I rang him rather cranky about it all this afternoon - he just repeated that. I know - it means nothing to me because that school wasn't on my radar anyway. I don't want a school with a great marketing plan I want one with a great philosophy. Still what about my friend and her little girl? They had long ago settled on this transition program being the bees knees - they just hadn't considered what on earth to do until then...
Me I wonder at the level of 'integration' mentioned as available in the program given that they are so resistent to it in kindy for goodness sake - we are talking kids who have a mild intellectual disability, and speech delay but they do talk, have great receptive language, can follow routines, stay on task, are toilet trained - what planet are these people on? What is the philsophy of education? I don't think it is for me - even if I could afford it.

My school of choice might be looking at me a bit nervously - but they aren't saying 'no' (yet) - they have a fundamental philosophy that I like and that I think/hope will work in our favour.

A Story in 5 parts

Part 1 Fear

I have been to a couple of 'information sessions' for parents of children with special needs about starting primary educaton. At each session the nerves and fear, the tension each parent feels is palpable to me - even over the clamour of my own anxieties and I admit near hysteria on occassion. We are the new recruits. We are tired from all that EI. From adjusting our families and facing the world every day as the parent of a child that is 'different'.

The speakers have been older more experienced veterans. The Bogart and Bacall crew. They have a blunt battle weary message. It isn't always uplifting. Yet they bring such hope. They cope. Their kids cope. Life goes on. It is just another battle front - and overall once you find the right fit - it seems to operate as at least a truce between the parent and the school.

These old soldiers share their battle tactics with us - take notes, don't go alone or you'll get ambushed. Do reconnasance. Advocate. Persist. Stand strong. You can do it.

It's comforting but also daunting.
Then there is the other information session - the bureacratic one. We are all more anxious here. This one is run by the people who can help us. The ones in the know - who understand the system - from the inside. The session is spent trying to weigh up what we hear. How much is genuine? How much is bureauspeak? What will it all mean for my child? So many questions and of course no answers at ths stage - just more information, another piece of the puzzle.

Part 2 Anger
My DH calls me a loon - one those crazies who fire off diatribes to any poor fool who has to lend me an ear. I write a letter. I know it is emotive - I write it in anger and tears, adrenalin fueled. I don't show it to anyone. It is cathartic. I am not really like that - I wait. I edit carefully. I am aware of the inadequacies of my words. The traps. The contradictions. I don't want to offend the educators I have spoken to - yet I do want to give them a good shove. They are not 'bad people' in this scenario, still I think it doesn't hurt to remind them that in the mill of enrolments for next year - they might have some rather antsy folk like myself - in need of mercy and/or compassion. I want guarantees. I want information now. I am trying to read through the 'public speak' to the person beneath the professional persona. I need an allie. I am on the HUNT for one.

Part 3 Action

here it is - identity slightly less concealed - I am applying to these schools after all!!! I can't afford to scare them or offend them. I think they are good schools.

Dear editor
I read last month’s education issue with great interest as I have twins who will be starting school next year. I am on the open day treadmill as I type having visited an infants school earlier in the month and a local catholic school today with three other open days still on the to do list.

The whole process is disheartening and incredibly daunting. In spite of having been a high school teacher for nearly 20 years I found myself in tears raging, wondering what is the point of education?

Both schools I have been to have been are perfectly adequate and have good reputations locally. What I don’t understand is why educators aren’t beating down my front door. You see one of my twins has an intellectual disability. She has Down Syndrome. Here are professional institutions with a passion for learning – so why is it that they aren’t amazed and interested in my daughter’s progress?

I want a place where my daughter is welcome. Why do I have to negotiate with a school to accept my daughter and then try and stuff her into their square hole – my beautiful, fun loving, hard working little girl deserves so much more than that.

I get the theory that my daughter belongs in a regular classroom. I believe it too. The state expects her to be in a regular classroom and so do I but without adequate support and expertise we are setting her up for failure. I discussed this reality with today’s Principal – and oh yes she understands that point very well too yet the mother in me cries out to teachers and principals like her - why oh why couldn’t you say – “yes I know but we are really keen here on adapting to meet your daughter’s needs. We will go out of our way to help her adjust and meet her potential.” Instead at both schools they have been quick in linking me to various bureaucratic requirements such as IQ assessments that may get her some funding for support.

Why is it always about how she will fit in instead of how they are going to do their jobs and draw out at least some of what she is capable of? It’s not that hard – I’ve been doing it ever since she was a baby – and she is remarkable. She also has significant speech delay, takes longer to respond to questions while she processes what she is hearing and then forms an answer and is far better at visual cues that just spoken ones.

Today I am tired and I am upset. Neither school have done anything ‘wrong’ but they have been acting to their formula and I feel like I have to ‘prove’ my daughter worthy rather than they convince me that they can meet her needs – that they have that standard of excellence. All the gifted and talented programs and the Smart boards in the Sydney wouldn’t be able to compete with that. Now that would be a school that educates.

Part 4 Solidarity
You gotta love another special needs mama. We are a gang - in the best sense of the word! A couple recognise my writing. One Mum who I don't know that well but who lives nearby has a duaghter with DS (her daughter is fairly similar to Hannah - with obvious individual differences but overall they are pretty well matched). She is looking for a school for her for next year. We compare notes. She comments (as one of my other friends has also done - and which I totally agree with!) that this is so hard. It has taken her by surprise how hard it is. She wakes up worrying about it in the night. She has been reading and reading on it. She has been setting up interviews at as many schools as I if not more. Like me she got lulled into thinking it would all be ok - when it happens. We got over the shock of the diagnosis of our daughters and got on with admiring their every achievement. Now we are being asked to focus on their differences, their weaknesses. [I hope I haven't misrepresented her thoughts here]. One school got a particular mention. It has a great reputation and a particular class for older kids with special needs (as do a number of gov schools in our area). I was surprised to hear that the interview didn't go so well as she had hoped. The school had not seemed as accommodating as she had expected. They are better prepared for older children with an intellectual disability. Well, that was her perception anyway.

Part 5 - Sharing the Burden
The most glaring inadequacy of my words is that they don't acknowledge the best intentions of the schools I have spoken to. Anecdotally I have heard of parents receiving fairly pointed "have you considered school xyz.. the anywhere but here school". I got none of that. What I did get though was not enough to settle half of my fears - and I think that process needs to be improved. It shouldn't feel like this. Imagine my surprise at the coincidence, the school that my friend had mentioned so briefly - had contacted the magazine. They had talked about their programme and left contact details to be passed onto me as they thought that I might be interested in what they have to offer.
I will ring them - We disguised my identity very loosely by omitting the reference to twins. I don't want them second guessing the author as this other Mum. I stand by what I wrote but that doesn't mean that I don't have any regard or respect for what schools do - I am a teacher after all! It's just that sometimes I think they need reminding that they are in the business of learning and that every child has the right to that. Yes they need to be able to meet the needs of the particular child but that shouldn't become the excuse to hide their fears and insecurties and prejudices behind. Children like ours, especially if they get a 'mild' result in their assessment can really be left with very little - when clearly they could do amazing things - with support.

I went to observe the kindy classroom in our 'school of choice' last week. It looks great. I knowthat Han will have some issues settling in and I know they will need to make some modifications in their teaching to best suit her - but boy - they already have so many strategies in place that will really suit her.

So there we have an old building - a big classroom for 2 classes (dividers there but rarely used). 50 kindy students, 2 teachers and 4 parent 'helpers' on this particular morning. When I arrive one of the teachers is just finishing up whole class instruction on reading. There are an array of groupings (based on abilities and personalities) of oranges, cherries and the likes. Behind her is alarge notice board - it has the picture of the different groups. Next to each pic is the names of the kids in that group and then 1 or 2 visuals of what activities that group is to be working on. The children are dismissed and go to their various 'stations' that have been set up. There will be a ringing bell and one more change over. Before they move off into the second lot of group work Miss V calls them together - they do a brief listening game. It is like one that the brats play in their music class. The leader claps and then the class copies. The teacher chose a range of kids to have a turn.

While I was there I saw one parent volunteer hand over hand modeling writing for a little boy. Another was outside in the hall going over some sight words. Another was helping the kids who had to write a story and draw a picture to go wiith it. The last parent was helping kids cutting and pasting in a picture sequencing activity.

Lots of phonics and whole sight words - perfect for Hannah - and enabling Kit to go at his own pace.

Hannah's psychometric assessment is in two weeks and then a couple of days later the principal (from the 'school of choice') and a special needs support teacher will do a 'functional assessment' at the preschool.

The preschool teacher has had a visit from the EI special needs teacher - it went well and early reports are that some of the suggestions have already been implemented. (That doesn't surprise me as I know the teacher is good - it's just that Han gets no funding support which means that the teacher is working with her first child with DS with no additional support or training - that seems to be the 'mainstream way' in NSW where a diagnosis of T21 is not a sufficient disability to receive targetted funding) - ah that is a whole other post - which I will include soon as I have an update to include - just haven't worked out how to best protect anonymity in doing so.