Hopes, dreams and wheelies.

This week I had a meeting at T’s school to review his school support plan. It was quite a large meeting: myself, Miss E – the lovely school SENCO, an Assistant SENCO (who was equally lovely but I have forgotten her name… if you are reading this I apologise. You really are wonderful, but I am terrible with names!), Mr W – T’s new class teacher, Mrs B – T’s amazing class TA, and M the OT – who, quite frankly, we adore. These meetings will take place each term to review the care plan in place for T at school. We discuss his ever changing needs, things which are working, and things which are not. In this meeting we also had the addition of a new giant 50,000 page form from the Hull SEN Team, which is now apparently required before his EHCP can be processed. For those not familiar with educational acronyms (honestly, I am a teacher and even I am not familiar with them all), EHCP stands for Educational Health Care Plan. According to the God of all knowledge, aka Google, an EHCP is:

A legal document that describes a child or young person’s special educational, health and social care needs. It explains the extra help that will be given to meet those needs and how that help will support the child or young person to achieve what they want to in their life.

This plan will hopefully open a few more doors for T and also help his wonderful school to help T with his education; and access funding to be able to put strategies in place in order for this to happen. This could be specialist equipment for him, 1 to 1 support or assistance (which will need to increase as his illness progresses) or anything else he, or they, might need.

The paperwork to apply for one of these bad boys is hefty and long winded. Miss E spent months gathering reports, evidence and the required information to be sent off, only to then receive notification that she must now complete another giant form (with the same information she has already submitted) in order for T’s application to be processed. This is both frustrating and ridiculous. In the mean time, T’s school have no access to any funding to further support him. The whole process needs a serious review. They are currently investigating temporary funding as an interim.

T’s school are absolutely incredible (as I have stated before), and we really could not wish for him to be anywhere better. They are so considerate to his needs and well-being, however one of the main issues at the moment is T being able to evidence his academic potential. He is bright as a little button, however, in terms of tests and evidence, this is not reflected in his work. He physically cannot write enough to do this, and typing is equally as slow. Something school have also cited as a developing concern, its T’s mental fatigue. We are all used to T becoming physically tired, however that physical exhaustion is now spilling over into mental exhaustion too. T is a hard working and determined dude, who loves to achieve. Sometimes however, he is simply too tired to learn. This bloody bastard of an illness, is creeping its way into another aspect of T’s life… however, it has underestimated our determination to keep it out! F-Off FA! Not gonna happen this time, you Twatbag. School are investigating alternative methods of differentiating his work and new forms of evidence. ‘Talk to Type’ software will be introduced to allow him to dictate, and scribing can be used in the interim. A new key-guard will be used to help with his typing and his energy levels factored in too. The main difficulty I think we all have with T though, is how far to push him. We still live in ‘Illness Limbo’ and none of us really know how far is too far. I guess we just continue to take each day as it comes.

One aspect of the meeting I found challenging and emotional, was discussing our hopes for the future for Mr T. He had told Miss E earlier in the day, that he wants to be a professional footballer or wrestler when he grows up. Who are we to limit his dreams? What we do know, however, that the future for our amazing little man is full of uncertainty and challenge. Our main hopes for T are that he is able to reach his potential, that he is able to have some independence and, most of all, that he is happy. When push comes to shove though, isn’t happiness what we all want for our children?

Speaking of happiness, T had a particularly exciting day last week. A charity called ‘Go Kids Go’ had contacted the school to offer some ‘Wheelchair Awareness Training’. Basically, they took a class sized collection of wheelchairs into school and delivered practical sessions with both staff and students on wheelchair skills and awareness. They discussed inclusion and introduced activities such as ‘Wheelchair Bulldog’ and ‘Wheelchair Basketball’. For the first time in a long time, T felt exactly the same as everyone else. They all wheeled about together and he LOVED IT. The staff delivered 2 sessions across the morning and T was able to participate in both, acting as a mentor and assistant in the latter. Now those of you who have met T, will know that he’s not exactly shy and retiring… so consequently he got stuck right in showing everyone how to negotiate curbs, score baskets and do wheelies!

He smiled, the teachers smiled and the other children smiled too. It has also opened T’s eyes to some of the other sports he can access in his chair. He is keen to explore this further and so we are going to go along to the ‘Go Kids Go’ activity taster afternoon in January. Apparently me and J also get to wheel about too… I fear I may need ‘L’ plates… if anyone has seen me trying to parallel park I am sure you will agree!

So thats our recent news. Check out Go-Kids-Go if you get a chance: http://www.go-kids-go.org.uk. I’m off to practise my wheelies in preparation for scoring some serious Mum points… just don’t tell T that I pinched his chair to practise*…


*This is highly doubtful as I don’t think I could even fit one thigh into his chair…



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