Ava’s Inclusion Story

Ava was born in Feb 2012 and was diagnosed with Down Syndrome. We were informed of all the things Ava might not achieve, things she might not be able to do and things about her appearance we should be aware of – well clearly they had met their match with Ava. She had the most beautiful thick hair and gorgeous skin. Although the age related targets took a bit longer to achieve, Ava got there in her own time which was also down to her sassy attitude.

When Ava was diagnosed my first thought was: I’m not listening to what she can’t do or won’t do, I’m going to encourage and push her to achieve everything she is capable of. I never thought she won’t be able to access mainstream schooling, I just thought there might be a few obstacles in her path.

Ava’s first challenge was to socialise with other children. Ava was very happy in her own company. I took her to lots of baby classes and found we got mixed responses from people and that lots of classes do not cater for children with additional needs – they would rather you go to a special SEN class specially for SEN children. I did attend SEN classes put on by the hospital but I wanted Ava to know she didn’t have to be surrounded by special needs children. I knew as she got older she would know she is different but wanted her to know it shouldn’t make any difference.

I enrolled Ava in the local preschool, a massive step for me as I hated leaving her. She always needed a 1-1 support worker and they provided this. I shouldn’t have worried – she took the whole experience with a pinch of salt. I had nurtured a confident and I would say stubborn little lady. One day turned into 5 days at preschool with no worries apart from the fact Ava wanted to do her own thing, she did have this strong willed side where if she said no you know it’s a no.

She made lots of friends and was very popular; she enjoyed all the same experiences as any child at that age. She couldn’t walk but this didn’t stop her getting around. This was my only concern for mainstream school as the preschool was a big open space and classrooms are smaller. I didn’t want her to be trampled on, then not like school and not want to go. As usual Ava decided when she was ready to walk – the term before she was due to start school. I had a contingency plan where she could attend a dual placement; I soon changed that to just mainstream as I knew she would have no problem socialising and she was very confident and extremely nosey so all the able children would be a massive bonus as Ava would want to know and see what they were doing.

First day in reception went without a hitch. First thoughts from the teacher were about her needing slow integration even though I said I didn’t want it too slow as she needs to get into the routine as quickly as possible. After some persuasion Ava was in full time school within two weeks and she loved it; all the children were amazing with her. They knew she was different but because she would get on with it they made her feel part of it.

Ava’s confidence grew daily and her desire to try new things. I encouraged lots of activities at home and worked closely with the 1-1s in what was happening in school so I could help prepare Ava. She started swimming, which was provided by the special needs school I was going to send her to as part of a dual placement. That went well although again she was stubborn and only seemed to enjoy it when she had the pool to herself.

The benefits of mainstream for Ava were huge. It opened up a whole new world. I think children with additional needs, not just physical needs, can benefit from inclusion as it encourages them to try things maybe they wouldn’t get in a special needs environment. Friendships are a big thing too; they encourage engagement and speech also sharing and understanding. Being surrounded by 30 children instead of 8 helps them learn to wait and share. Ava was getting used to this idea in year 1.

Ava was like a little celebrity in our area. I couldn’t walk through Sherwood without hearing a little voice saying “there’s Ava” or a hello from a parent – I have no clue who they are but they know Ava from their child telling them what she gets up to.

When she passed away I had never seen such an outpouring of grief before from so many people of all ages and parts of the community. We were sent hampers of various things, cards pushed through the door from people I have never heard of, unicorn (her favourite) related items left outside, bags of shopping left on the doorstep – it was endless. The most heartbreaking part of this apart from the loss of Ava was reading all the cards and messages form her school friends from all the different year groups – not just her class.

Donations towards her headstone were pouring in and money was being donated to the Sepsis Trust. But at this time we didn’t want anything from anyone so it was hard. Ava would have loved the attention which I know now she got from everyone she met, and anyone that met her knew she had left a lasting impression.

I have worked with SEN children for a long time and already knew the benefits of inclusion but when you have your own special needs child it becomes much more. I learned anything is possible with the right encouragement and guidance. I learned to understand that patience is key. Things might take that little bit longer or need to be taught in a different way.

We as a whole family learned about bravery and that you should never give up no matter how hard it seems. If there’s a will there’s a way. A lovely quote was sent to us on a poster “though she be but little she is fierce”: that was Ava.