Summer is absolutely here. These days are really hard, the extreme temperatures does absolutely nothing for Charlie’s sensory needs. Thank god for the pool!! We have been in the pool almost every day, maintaining the pool is definitely more complicated than I first anticipated. But is so worth it, because the sensory feedback Charlie gets just makes these days more bearable. We really need the pool on days as warm as this. It is getting Charlie used to temperatures that we may see in Lanzarote.

Part of preparation for the summer I have done our summer schedule. You may of in the past seen the whiteboard we use at home to communicate with Charlie what we are doing for the week. This is similar, we have the weeks planned out and it’s all colour coordinated so that we know what everybody’s doing. It’s set out so we have some semblance of routine. Set days when I am working, when we have day trips and when he goes to his dads. Because of my work shift pattern, I need some sort of routine for Charlie to ensure that the holidays does not descend into chaos.

As far as education and Charlie’s EHCP has gone, we are close now to the final plan. We have been agreed 8 hours of tutoring, OT support, SaLT support, we will be meeting with Charlie’s new SaLT in the coming weeks. And a mentoring programme of 3 hours per week for social activities. Along with a personal budget for things like day trips to discover local culture, and trampolining. It still feels forever away and I imagine it will still need lots of amendments because that’s what happens in our life!! Charlie has unfortunately never had a straightforward EHCP review, draft or final plan. It’s been exhausting trying to fight for this. Charlie deserves the bare minimum at the very least and the absolute best at the very most and we don’t even scrape to the bare minimum, it is soul destroying.

We stay positive though. We have a few plans throughout the summer and I am happy to have the pool as it is the only thing that is making like bearable in this heat. The heat is so intense in the day, that it literally paralyses Charlie. He is unable to communicate, or take part in any activity. He is sensory seeking all day long. The evenings are better as Charlie is able to manage his emotions better and take part in just every day activities, such as coming out in the car. The heat makes it impossible for him to take part in every day life. And then the nights are awful again. Stale air, that’s too warm. The fans cause a noise that upsets Charlie and he can’t block it out. Charlie also struggles with the windows open and the noises outside. The noise from outside is heightened due to the presence of people out in their gardens or out on the street having late night walks. This time of year is honestly the worst for us. And I, for one, can’t wait for it to pass. Roll on September - Year 6. Home education in full swing!

Take care in this heat and stay hydrated.

Georgina x