1 year + 100 days

Posted on: 06/07/2015

Just when we thought life couldn't get any busier, we have had an unbelievably hectic few weeks. Firstly, I have been reviewing Ava's therapy provision. As her recent tests in Milan indicated disease stability, we have been puzzled by her increasing struggles with mobility. Ava's balance has deteriorated further and she is currently unable to stand independently for more than a few seconds without falling backwards or sideways. This has been very frightening for her and she has been getting frustrated by her enforced reliance on others. Having reviewed her current therapy regime, it would seem that the combination of different therapists in different locations have not been able to provide as focussed and consistent a programme as is required. Further to a meeting with her neurologist, we have decided to send Ava to a dedicated 'neurological rehabilitation' facility, which deals with the kind of neurological trauma and damage to the nervous system that children can incur post-stroke or head injury and which Ava has experienced (in the period before the treatment had taken full effect). This will focus on very specific exercises to re-train her balance, with a lot more repetition as opposed to the current programme which has a lot of variation. We have already had a couple of introductory sessions, which have been very positive and as soon as our school summer holidays begin, Ava will join an intensive rehab programme for 3-4 hours every day for 6 weeks. Because of the fact that she has sustained a degree of damage to her nervous system, this will be a long road to recovery and one which is likely to take years rather than months, it is very important that the therapy is carried out by those with very specific knowledge and experience. So our physiotherapy, occupational therapy and speech and language therapy will now all be carried out in the same place by the same team. Ava is looking forward to a refreshed regime and we are hopeful that it will give her balance a much needed boost before she returns to school in September.  My other big preoccupation has been trying to establish the best solution for Ava's schooling. For several months we have been through a rigorous independent assessment process which has been trying to ascertain the most beneficial and suitable environment for Ava, including special needs schools and other mainstream establishments. After special needs schools ruled themselves out because of Ava's complex needs and lack of physical independence (the ones in our area just focus on very clear-cut cases of dyslexia or dyspraxia), the panel decided that it would be in Ava's best interests for her to remain in a mainstream school with a 1:1 assistant, who can maintain her safety and deliver a individual learning programme. We are delighted that they recommended Ava stay in the environment which she knows and loves at Francis Holland. This was not only because of the emotional security and stability which being with her friends and sister affords, but also because our school is actually relatively small and therefore a calm and less hectic environment than the other larger establishments in our area. The site is also physically fairly lateral, which was another big consideration. Last week we finally heard that our application to Westminster council for special needs funding has been successful and that they will allocate Ava a personal budget which can go towards the cost of the teaching assistant. This is really fantastic news and a very big relief to us as we are already facing a huge increase in our outgoings for Ava's new and more specialised therapy. Our sincere thanks go out to Councillor Philippa Roe for her very genuine concern and invaluable support of Ava's case.  If all of this hasn't been enough, we have had the usual flurry of activity as the end of term rapidly approaches, a particularly busy time for Angelina with the school swimming gala, piano and ballet exams, school BBQ and summer concert. Ava has been an enthusiastic spectator throughout and also took part in a Year 3 project presentation where the girls invited us into their 'travel agency' and took us on a world tour with their fantastic facts about individual countries. All of the girls did a great job and I was very proud of Ava with her poster of Dubai, finding her voice to tell each visiting Mum about its hot desert climate, fun activities and noteworthy sights. We have actually been experiencing a Dubai-like heatwave in London this past week, which has been great, especially since Ava's therapy has dictated that we will not get a holiday this summer! Two more days of school and counting...