Sunday, 19 April 2015

It has been a long time... let's have a coffee and a catch up!

Shamefully, the last time I blogged was way back in March. I have so much to write about now that I am not sure where to begin!

The most important person to talk about is my gorgeous girl. The last 8 weeks have changed a lot for E, and I am so grateful to Great Ormond Street as without the team there, we would be still stuck in a vicious circle.

The grommets continued to make a huge difference to her. School have commented on how chatty she is now, and that she seems much happier; we are still seeing the delight on E's face as she experiences sounds that she either hasn't heard before either properly or not at all. The next big thing to happen was her assessment at GOSH. We really didn't know what to expect from her appointment; I was worried about the possibility of unexpected or bad news, or having nothing to come away with at all. We definitely went with more confidence than last time. Simple things like knowing our way around the buildings and knowing the booking in system made a difference.

The assessments were fascinating - a series of hearing tests and speech audiograms gave the consultant the insight we needed into how E's brain is working. He spent a long time afterwards going through the results of the assessments and finally a diagnosis. I find it incredible that E has been in the healthcare system locally since she was first found to have issues with speech and language at her two year check - 5 years ago - and in the short time we have been under the care of GOSH we have had more information, more change, more positivity than ever.

Continuing their amazing care, a week later the consultant's summary letter dropped on our doorstep. Finally, in black and white and under the GOSH banner we have accurate documentation of E's learning difficulties. The relief is immense, yet tarnished with sadness. I would like to share the full summary, purely because I have never met another child like my girl. If there is anyone reading this who has a child with similar difficulties, then I would love to hear from you.

"...a very complex presentation with learning difficulties, significant speech and language disorder, poor short term memory, poor confidence... possible autistic features and some attention deficit... significant auditory difficulties especially with quieter voice levels, background noise and poor quality speech... auditory processing difficulties..."

Quite a list! Our challenge now is to find an environment which allows E to be absorbed into learning. It is a huge ask of any school to have a classroom which is quiet and where the teacher's voice is always of good quality and directed at E so she can understand. We have already been to see a Specialist Support Centre (SSC) for speech and language which is based in a school just 10 minutes away. It beggars belief that we have been in the Speech & Language Therapy system for 5 years and no-one ever thought to tell us this existed, but I am trying very hard to look forward to where we are going rather than dwelling on what should have happened.

We are also exploring Home Education. I have my reservations about withdrawing E from the school system, but I am also quite excited about the prospect of teaching her, and quietly nurturing her so she finds the confidence in herself to start bringing together what she knows to boost her communication skills. I want to say that E's SENCo at her current school is amazing. She has become a huge source of support not just for E, but for me too. The decision to change schools would be so much easier if I didn't have a great relationship with her. Well, I probably annoy the hell out of her, but I really respect her. I can't help wondering if, with the correct equipment as recommended by GOSH if E would thrive in her current school.

We are going back to the SSC next week with E to see how she responds to the staff and the environment. Changing schools would potentially mean also moving daughter number 2, so she will also come along to see what she thinks. A big decision awaits us.

Of course, I am hoping that someone, somewhere out there is interested to know what happened with Brighton Marathon! 26.2 miles around the beautiful city, a gorgeous medal waiting on the finish line....

The last time I posted I had just done the first of my long training runs, 11 miles. It was a good run, and it certainly helped me to feel confident enough to take on the rest of the training. The next long run, 16 miles, wasn't so good. I was so looking forward to running with L again but at 10 miles my knee had enough and was on fire. It didn't help that I had completely forgotten our route and managed to get us lost. I have to admit that it was quite funny trying to navigate our way through the fields (oh yeah, did I mention the lost-ness meant we had to try a bit of trail running...) back into civilisation! At 13 miles my knee came back to life; I'm not sure if it was all of the stretching, repositioning of the IT band strap or plain refusal to stop but I finished it. This was the farthest I had run to date and it was hard, hard work. I had to find real mental strength to not let my knee pain dent my confidence even further.

The planned 20 mile training run filled me with nerves. Despite best efforts, the pain and effort of the 16 miler had knocked my self-belief sideways. The beginning of the run, I stayed quiet and internalised my fears. I was running with my marathon buddies, and having them at my side was reassuring but I was just waiting for it to go wrong. All of our families had arranged to be at various points of the planned route, and seeing Paul with the girls waiting for us as we crossed the bridge over the river was a huge boost. Even before the halfway point, they were cheering us on; they believed in us. They believed in me. As we approached 10 miles, I could feel myself tensing in preparation for the knee pain. My buddies gave me a stern talking to, and funnily enough the knee pain didn't start. I relaxed and began to enjoy the rest of the run. We continued on, with family members whooping and cheering, carrying the supplies we needed to fuel ourselves for the distance. This was our dress rehearsal. The effort and tiredness hit me again at about mile 14, but seeing my friend out for a walk with her daughter who has Cerebal Palsy spurred me on and I dug deep, feeling grateful that I could physically do this. The joy of completing the 20 miles, relatively pain free and not as exhausted as I might have expected, was immense.

My knee didn't agree with me that the 20 miles was a good run. What followed was three attempts at short runs which were all abandoned much before I had planned to. I made the decision not to push it, and that resting the injury at this stage was far more important than running 4 miles. I had already made my mind up that come what may, I was starting the marathon. There was no way now that I was missing out on the experience, the runner's high and my medal. My family and friends rallied, so many of them sending encouraging messages but also by sponsoring me. I held a raffle at the girls' school which was a huge boost to my fundraising, but notification after notification pinged on my phone to tell me another donation had been made to my JustGiving page. All of these people believed that I could do it, and I had to believe they were right.

The countdown had well and truly begun. I was definitely going to be at the start line, but would I make it to the finish?

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