Our day started with a loud bang as Andy’s feet hit the floor and we were off! Mercifully it was not too early but it was to be a relentless day in many ways. After getting the kids off to school and Andy settled with his teacher, we started our week off with another long meeting with our new social worker. I have to say she is a pleasant and supportive person and the early indications are very positive. Unfortunately the system is grosslyunder funded and not fit for purpose. The service does not see it’s duty as reaching out to those affected with disability I was informed this week. Pursuing legitimate support for children with a disability is an additional massive strain on already stressed and worn out parents but that is just the way it is these days. I would like to see social work offering support services and assessments to families pre and post diagnosis to enable them to be aware of the supports they should be entitled to. Unforgivably this is not happening currently. If families who are struggling to come to terms with their precious children being diagnosed with a lifelong disability, are not told about services they can’t and indeed won’t apply for them.
We had a quieter afternoon with Jen and I taking turns at engaging with Andy and carrying out various tasks mostly connected with autism. We were arranging to go and see a venue for an ASD parent support group among other things. I was also working for my uni tutorial for tomorrow (autism related – you’ve guessed it!). As afternoon became evening Andy was showing signs of being unsettled due to his irregular bowel pattern. It gradually got worse and we spent most of the next few hours closely supervising him and going in and out of the bathroom with him. As his discomfort increased he became predictably more agitated. He now usually makes the toilet but still would rather he could just ignore the need and hope it will go away. We must have been in and out of the toilet scores of times with him. At one point he was running in to the bathroom and I followed him to give him support and supervise him. I was tired and moving too quickly and I managed to trip on the step and went sprawling on to the tiled floor of the bathroom. Everyone got a fright including me. David was in the bath and popped up looking alarmed. Helen shouted from her bedroom. I quickly assured them all I was fine although I had banged my head and face and hurt my leg a bit. Oh and damaged my glasses. It could have been much worse though. It was another reminder that I am getting older and these tasks are getting harder. All carers require an adequate rest to enable them to carry out their crucial roles. If this is not recognised then the costs to our loved ones and to the public purse really is immeasurable.