I thought this week was going to be a wash out. We had an incident in swimming on Wednesday which meant that Charlie had to be removed from the pool. On Thursday I got the dreaded call. You know the one, the one you dread thinking that the worst of the worst has happened and your child is being excluded. It wasn’t that bad but after only 2 hours I was asked to pick Charlie up. I was devastated, we were doing so well. Charlie was doing so well.

In the past, being sent home (almost every day in some cases, in periods of Charlie’s mainstream experience) was a gateway to destructive behaviour that would escalate and Charlie would deliberately cause situations where he was sent home. Because of this, I gave up my career, I had no other choice. I am on my own with Charlie and he needed me at every point of the school day, I had to be accessible to him throughout the school day. It was impossible to manage a career and Charlie and let’s face it Charlie would always win. His education and mental health was always my priority. So naturally when I get these phone calls to go and pick him up I am transported back to those dark days where we struggled to survive.

After Thursday’s call I genuinely didn’t know how I would manage Friday, and swimming too! Charlie is INCREDIBLY fortunate to access swimming twice a week. However, after Wednesday’s incident I had my reservations. But he smashed it my little hero! He went, with some, ok a lot of prompting. And I was so happy! Especially when I found out that Charlie went swimming today too. What a result. I am so proud of him for conquering these barriers head on.

It did give me food for thought though. I often toy with the idea of going back to full time work or increasing my hours to be more financially stable. But, then I get those phone calls and I have those mornings when tempting Charlie in the car is a very stressful experience and him knowing I take him every morning and every evening pick him up and that sort of stability is paramount for Charlie’s mental wellbeing and for keeping him regulated. I am going to need a very flexible job and a very understanding employer and that is going to be difficult. Balancing Charlie’s needs and a career feels like it will be impossible.

Following on from that, I have finally finished the Disability Living Allowance form and gathering the evidence needed for Charlie’s claim. It is up for renewal in June and there is normally around a 12 week wait. Up until now, we have had two 2 year awards and it would be lovely if we get a longer one next time. As these forms and the evidence gathering for it takes such an emotional toll on me. Not knowing whether we will be re-awarded and the stress of what will happen if we are not. The DLA is a vital part of our income and helps me so much for financing the parts of Charlie’s childhood that he needs.

I have been thinking more about making an official complaint against the LA and it is definitely something I am driven to do. And I have realised I do all these school runs but they add up over the week. It is 40 miles a week. So I will be putting in a claim for transport, as that is many miles in my little car and undoubtedly will put a strain on my car.

Anyway lots to do, and very happy to be signing off for the weekend. We are almost back to normality.

Georgina x