Several weeks ago I started writing this post with the assertion: “I’m dreading Christmas” but didn’t get beyond that.
Dread is a strong word but winter has been tough around here and it is only now that my term has come to an end that it feels the cloud might be lifting slightly. I absolutely knew that starting a new job with a different working pattern would shake things up but it has been far more traumatic than I ever expected. Both Ruben and his sister have gone through periods of intense social anxiety and challenging behaviour and balancing their needs and demands with other responsibilities has been all consuming and very isolating.
Physically, Ruben’s health has not been great with a couple of nasty illnesses taking a toll. Interestingly, a virus often seems to bring out his autistic nature more than when he is bouncing around, tormenting his sister in a completely neurotypical manner. It is almost as though the mask slips a bit when he does not have the physical strength to put on his best facade and we are left with the withdrawn, obsessional, incommunicative little boy that was so familiar through his first few years. If ever I needed a reminder of the strength and effort it takes him to present a cheerful, interactive persona to the world, this is it.
His seventh birthday in October absolutely encapsulated the fine line we are treading. Even though he liked his presents and everything went mostly to plan, his stimulation levels hit fever pitch and left him both difficult to control and completely exhausted. The mingled sense of frustration and failure at the end of that weekend was tremendous – how could it have gone so wrong? Why haven’t we learnt our lesson yet? What more (or less) could we have done? We have made countless bad calls over the years and will doubtless make many more but this one hurt because we’d dared to be optimistic. Maybe there’s a lesson there or maybe it is just one to file under the ‘move on’ section, knowing that disappointment can be a powerful motivator.
School… where do I even start to sum up how Year 2 has progressed so far…? Highs have been plentiful but it has never been clearer that academia is but a small piece of the jigsaw. He has challenged and defied his teacher and Teaching Assistant more than ever before and the social struggle is growing. His inability to understand boundaries and pick good role models has been really tricky to manage and is something I worry about moving forwards. He has been hurt physically by fists and emotionally by deliberate exclusion from activities and unkind words but has aced tests and brought us to tears of pride at his resilience; even at his lowest point, this extraordinary little boy is capable of turning things around. This term he started to draw, specifically buildings (mainly cathedrals and castles) and that has been the best therapy imaginable. Yes, the house is littered with half-finished impressions but seeing him at peace and being able to sit with him and watch an interest develop has been an absolute joy, as well as giving me a chance to indulge an old hobby completely guilt free.
And to bring you right up to date, this morning I took Ruben to see the doctor about his horrible scratching habit. Hearing this described as ‘self harming’ by Occupational Therapist who then said she wasn’t able to deal with the issue was a bitter pill to swallow as well as a ringing indictment of the system we are stuck in; where kindhearted professionals are sympathetic but unable to provide support because there are no funds or resources available and so you start down a new path, attacking the issue from another angle. Today he goes onto the waiting list for CAHMS, with all parties acknowledging that this may not be completely the right approach but options are not exactly plentiful and we need to do something. It is important to differentiate between the disability and the mental health, however intricately they may my entwined, and getting into the system is probably a good move to pre-empt the difficulties that may well develop over the coming years. THIS is why SEN parents struggle, why couples split up, why friendships and social lives disintegrate and why we are a bit rough around the edges.
The festive season may actually not be the most wonderful time of the year but The D Team is still pushing on and the only way is up (baby!)
Maybe he's just lazy 