Tay...

Recently we stopped calling Tayler 'Tink' for short and started calling him 'Tay'. I guess that's what happens when you get older, you put away the childish things and move on to things that more 'cool'. So today's post is all about 'Tay'.

The progression of (Tayler's) Tay's Muscular Dystrophy is becoming more apparent. We have known this day would come, and have been prepared for it through steady progression of his disability, and the support of incredible kind and helpful medical professionals. But have recently become aware that school need to be on board too. Tayler's teachers mentioned that we would need to meet together to discuss his needs some months ago, however we weren't able to all meet together until today. I'm not sure what I was expecting from the meeting, I guess a little of what happened really. I pictured us sitting and discussing Tayler's increasing needs, with the support of his amazing physio adding weight to the issues that needed to be raised. I didn't realise I would need her valuable input quite as much as I did.

The meeting involved me discussing the list of concerns we have about Tay - poor concentration, extreme tiredness, poor motivation, lack of sociability, falling, tripping, inability to run, reduced upper limb strength, poor eating habits, low self esteem, and his current acknowledgement of his disability. The list is long. And although each item on it causes us and Tayler daily discomfort and distress, I have to say that we work through and cope with each one. Life is good, we are happy. But it was important to talk about each of these areas so that school are aware of how they can help. A very important lesson I learned today. If you don't ask for help, people simply won't even be aware there is a need. It's not that people are uncaring, they just won't be aware there is even a problem. And on the plus side, we wouldn't have been aware that we have another pool of incredibly caring helpful people to support us. More support = a very happy me!

So how can school help? Here's a copy of our action list. I am overwhelmed with their support to say the least. And know that the most important person, the one at the center of all it all - Tayler, will feel the same way I do. This 'to do' list couldn't be better.

Actions (for school & home)

• Staff support for Tayler’s wheelchair use - someone provided to manage & push Tayler
• PE - swimming - Tayler to swim throughout the year
• PE - all curriculum - Tayler to be allowed to do separate activities (report writing, photography etc) for all PE activities (especially summer sports day).
• Laptop - school to provide access for Tayler to laptop & time on computer programs to teach keyboard skills. Also follow-up at home with access to internet based programs.
• School to provide Tayler with extra support/counseling to build self esteem. And support Tayler to build good friendships (Tayler to be with his best friend).
• School to apply for ‘Audit Funding’ for Tayler for LSA support & daily school based exercise program to be established. Physio to write report.
• 6 months time - another meeting (November 2011) to discuss implementation and any changes.
• Me - is there a profession we can have access to for classroom inclusion presentation?
• Physio to follow-up with occupational therapists re: referral, school support (exercise program) & a report from them for ‘Audit Funding’.

I'm sure it will take a while to implement, but I'm hopeful we will eventually get around to doing each item on the list. I'm so grateful for having my boys in such a fantastic school!