Wednesday, December 09, 2009

Closing the door on EI

Learning to walk with a weighted trolley from EI
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 the speechie 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.

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