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One-page profile of a child with learning disabilities – Alex
What others like and admire about me
- I am funny and cheeky
- I am a great singer and dancer
- I look out for and after others.
- I give great hugs.
- I have lots of enthusiasm for having a good time.
What’s important to me
• Being at home with my mum and dad and brothers Jacob and Izzi.
• Talking about Jacob and Izzi and my friend Ajay.
• Going to my pre-school. I love being at school
• Breadsticks! They are my favourite snack along with quavers and wotsits
• Having tomato ketchup at mealtimes – I put it on the food by myself
• Watching Mr. Tumble and Justin’s House
• Going to Pizza Hut on Tuesdays with Dad, Jacob and Izzi
• Doing things by myself – like eating and getting dressed
• Playing with water in the bath
• Playing with friends – Ruby and Ajay in particular.
• Singing – I LOVE singing Happy Birthday.
• Bubbles – I really like them and am getting great at blowing them!
How best to support me
• I am confident walking but I find stairs and uneven surfaces difficult. I need to hold hands with someone to stay upright.
• I can stop walking suddenly and sit down and I don’t understand danger when out and about so I need support to stay safe.
• I can put a lot of food in my mouth when eating. I need reminding to take my time.
• I find it difficult to wait for things that I want. I need support to understand turn taking and to speak quietly.
• I don’t understand danger – if something is too hot, too sharp or shouldn’t be eaten or drunk. I need someone to think about the activity I am doing or the environment I am in to make sure I am safe.
• I need people around me who use makaton to understand and be understood. Visual cue cards also help me understand what I am meant to do.
• Having a routine in my life, and knowing what is expected of me, and what is going to happen next
• I need to sleep in a bed which has sides – I sleep sitting up and I will fall out if I don’t have sides to lean on.
When my son Alex was about to start pre-school, I knew there would be things about his support needs that I needed to be able to communicate to his teachers. However, I really didn’t want to introduce him or for him to start school life with a long list of things that he needed help doing. I wanted the new people in his life to meet him as the cheeky, funny, confident little boy that he is.
Alex has Down’s Syndrome and from the very early days it has felt like professionals can often be more interested in what he can’t do rather than what he can do. I just didn’t want his education experience to be the same. Unfortunately it already felt like it was going to be. I found myself filling in statements of special needs for his assessments and I realised how easy it would be to fall into this mindset. I wanted to counterbalance this with positive statements. Starting school was a massive milestone for Alex and I was determined to start him off on the right foot.
Alex’s one-page profile sets out how we want him to be treated, what is important to him and how he wants to be supported. We had used the same profile when Alex attended a short term respite centre and had a very positive reaction, with staff feeding back that it really helped them to understand him.
Using a one-page profile with Alex and his school means that we can be sure that we are presenting him in the best way and have the confidence that people will support him well. Alex loves playing with his friends, tasty snacks, TV programmes, bubbles, singing and playing with water. He can need support when eating - to be reminded to slow down, he doesn’t understand danger - so needs people looking out for him and he uses Makaton to communicate so it is essential that people use this method with him. His one-page profile covers all of this and much more and is in a simple easy-to- read format so can be picked up and understood quickly.
We update Alex’s profile every year and I love charting his development and growth in this way. Each year we see he finds new interests and discovers greater independence. My favourite part of updating his profile is talking to his classmates about what they like and admire about Alex. It is so nice to hear that he is well liked and fun to be around.
Since using a one-page profile with Alex and realising its potential I have introduced one for our family too. We find that we interact with so many health professionals, it sets out how best those relationships can work for us. For example, it is easier for us to have meetings on Thursdays and we prefer to have the opportunity to review paperwork in advance of the meeting. Setting out our stall in this way is empowering. It puts us on a more equal footing and as such we are in a stronger position to advocate for our son.