It's all a learning curve

Hello everybody!

How are we all? I really hope you're all happy, healthy and warm in this wintry weather we've been having!

Ok so, as I get snuggled up to get this blog up to date once and for all, it occurs to me that there are several reasons for its being left to gather dust, and that those reasons are actually part of our recovery as a family and a part of the journey through life as a family learning to live with acquired brain injury and so, because I value your support immensely and because I know my blog has helped some other families who are going through a similar experience, I thought I would bring you all up to speed.

The biggest challenge, the biggest change and the topic which has taken up the most room in my mind regarding Charlotte has been her education. It was apparent to Charlotte's doctors and therapists that she would be able to return to education in some way and the hope was that she would, with a lot of support, return to mainstream school. She would more than likely be left with learning difficulties but until more time had passed, more swelling has lessened and more recovering was done, there was no telling to what degree these learning difficulties would be or even how they would manifest themselves. As I was having a conversation with various healthcare professionals about this, I watched Charlotte struggling to copy and draw a simple circle and a cross that her occupational therapist had drawn. I watched her struggle to hold the pen, and to make it go where she wanted it to go on the paper. I could see in her eyes that she was almost amused by the fact she couldn't make her hand do this simple task, when she was more than capable of writing neat, well formed letters, words and sentences just a few weeks earlier. Far from being amused, however, this was one of those moments that momentarily but absolutely broke me. I had to leave the room but vowed that whatever she faced and whatever setting she was going to end up facing it in, she would never swap that look of amusement and those smiley eyes for a frown or a frustrated expression.

We started off our journey back into education with visits by the hospital teacher to Charlotte's bedside. It was really interesting to see how I was frustrated on Charlotte's behalf when she couldn't do really simple things like pick something up and transfer it to the other hand whereas Charlotte, ever the good natured child, found it all fascinating and amusing. It really was as though she was a baby again and was discovering her world for the first time. This was when I realised that this was exactly what she was doing. It was as if the reset button had been pushed and she was starting from scratch and going through all of the 'first' experiences again albeit a lot quicker. I would estimate that she went through ages 0-7 years in 12 months and this is where she appears to have stayed for now.

3 years later and we have been through 3 schools before settling on home schooling which is working wonderfully for Charlotte. She initially returned to the school which she was attending with her sister at the time of becoming poorly but it was pretty much immediately that they just couldn't provide the correct support and this experience, upsetting as it was, opened my eyes to schools having a massive lack of knowledge and understanding of acquired brain injury and gave me my first bit of drive to want to campaign for improvement in these services. Charlotte then moved to a school which was still mainstream but had much better provision to support and understand acquired brain injury as well as rehabilitate Charlotte's social skills and confidence, and all of this was able to run in conjunction with the work which we were doing at home and with the various therapists. This worked brilliantly up until the point I mentioned earlier when Charlotte's head had caught up to being age 7 again, got comfortable and decided to stay there. The gap between Charlotte and her classmates was increasing, I noticed it, the school staff noticed it and most importantly, Charlotte notice it. The more she tried to remember and keep up with her peers, the more tired she became on top of already being incredibly fatigued and all of this meant Charlotte's confidence, happiness and immune system suffered and went rapidly downhill. At this stage Charlotte was managing less and less time in school until it got to the point where her fatigue was actually causing her more health problems in the form of seizures, not knowing where she was etc. I decided then that we had two options. The noise and hustle and bustle of the school environment was as important to Charlotte and as much of a contributing factor in her fatigue and being overwhelmed as any other factor in school life and so, we could try a special needs school and hope that a quieter, slower paced environment would do the trick or I could home school her. In the time Charlotte had spent at home, I had been doing bits of work with her that I'd come across online, just simple spellings and reading but I noticed that she was actually starting to pick it up again. We researched and found a special needs school with amazing facilities and an 'outstanding' OFSTED report and Charlotte, now in year 5 and nearly 10 years old, started here. Unfortunately things went downhill rapidly here and the fatigue set back in with a vengence. She was coming home in agony, with nosebleeds and at one point, was re admitted to hospital. Enough was enough. We made the decision to home school Charlotte and I can honestly say that this was the best decision we have ever made. We have discovered a wealth of resources online as well as special, home education events at places such as museums, activity centres, libraries etc. but more importantly, Charlotte is happy, can learn on a true 1 to 1 basis at her own pace and to her own schedule and, for now, is actually romping ahead with her reading and is beginning, 6 months on, to start to retain or at least recall with a little prompting, some new information. All of this combined is making for a confident young lady and a very happy Mum and big sister.

A lot of people worry about how stressed I must be at how little 'me' time I get and yes, it can be stressful to try and fit in everything Charlotte needs in a day as well as the rest of the things that need doing but to me, having a happy child who is eager to learn, whose confidence flourishes with everything she achieves and knowing her health is being looked after is way less stressful, far more important than having a spotlessly clean and tidy house and much more of a fun use of my time than having a full face of make-up.

I suppose the thing I have taken from all of this is that whatever life throws at you, there will be a path for you to follow and there will be a way that works for you. You just have to have the courage to recognise if the 'norm' isn't working and to actually make the leap in seeing what else is available to you and stick to it.


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