Cyflwynwyd yr ymateb hwn i ymchwiliad y Pwyllgor Plant, Pobl Ifanc ac Addysg i weithredu diwygiadau addysg

This response was submitted to the Children, Young People and Education Committee inquiry into Implementation of education reforms

IER 60

Ymateb gan: Unigolyn
Response from: Individual

Nodwch eich barn mewn perthynas â chylch gorchwyl yr ymchwiliad. | Record your views against the inquiry’s terms of reference. 

· The professional learning and other support settings are receiving to ensure effective implementation of the Curriculum for Wales and the ALN system.

I have a 5 year old son, xxxx who lives with Angelman syndrome. This is a rare neurogenetic disorder estimated to affect about 1 in 15,000 – resulting in severe intellectual disability, balance issues, motor impairments and disrupted sleep. Most are non-verbal.

We live in xxxxxxxxxxxxx, where there are no dedicated schools for disabled children - just specialised units. This in many ways forced our hand towards mainstream schooling (which is generally unheard of in our Angelman community).

So xxxx has gone to our local village school, with one to one support, for 3 months.

It’s going brilliantly. I’ll tell you why:

- Transition planning with our local authority: we had an excellent dialogue with xxxxxxxxxxxxx Council very early on whilst xxxx was still in nursery, with regular meetings and contact to discuss the process. They got to know and understand xxxx and his needs. I had a lot of input into his IDP (which was crucial in getting him the high level of support that he needs) and I was respectively listened to, as a parent.

- Meetings with the school prior to school start: I spoke to the school as soon as we started thinking about schooling - to check that they were open to the idea; to check whether they felt they could support xxxx. They were so positive. The school got to review xxxxx draft IDP well in advance, so could start their own internal planning (staffing, required additional funding, etc.) early on. I arranged an informal meeting with the teachers in the summer term prior to school start, to help them understand what Angelman syndrome is and give them “xxxx tips”. This was well received and gave the  teachers more confidence; a feeling that we would together make it work.

- Schooling: we have a healthy dialogue. xxxx gets the local minibus to school with his sisters so I don’t see the staff every day, but we have a brief daily notebook exchange, which covers everything from how I think xxxx is feeling that day, to what’s working well, to suggestions to improve his development. I feel like we are a team. xxxx delights in playing with the other “normal” children in his class, and they treat him as an equal, offering chatter and cuddles. He follows what the rest of the class are doing for most of the day, with “xxxx” adjusted learning where appropriate. He is included in everything and treated the same. His development has really come on since starting school and most importantly, he is clearly very happy.

There is a place for specialised schools and units, in particular where a child has high medical needs or a child struggles with social interaction. But I believe that disabled children should not be shut away from the world. They should be a part of it. www.senedd.wales

With the right support for families and schools (practical guidance, training and funding) these children can thrive in a mainstream setting, as Xxxx is. And in turn, our communities become more inclusive and vibrant.