Week three –
Fab day out Monday. Marched up Yorkshire’s Matterhorn (Roseberry Topping) with eldest and NT middle daughter.
Tuesday- the eldest’s unsettled behaviours came back 😦 hyper hyper – not sleeping. We are having to work very, very hard to prevent this from escalating into aggressive behaviours. He’s needing constant changes of occupation and not too much time indoors. So several short walks and car drives each day.
Another respite night was cancelled due to staff sickness.
Saturday – a small epileptic seizure, well that explains a lot!
More of the same, exhaustion is begining to creep up on us now though. We are really missing those overnight respite breaks. Late nights and early starts since the start of July (when respite ignored his sleep programme and let him sleep in until 1pm in the afternoon, which triggered the initial sleep disturbance, which has escalated into the unsettled behaviour we gave now) have taken their toll.
Monday I deliver a handwritten note for the GP into the surgery asking for possible seizure meds increase. Thursday having not had a response I contact the surgery again. There’s no record of my contact. The GP phones Friday morning, apologises and agrees ro try increasing the current dosage.
I call respite to let them know and as a result discover that they have two totally new (to the job and eldest) staff on with Jamie for his stay there this weekend. I am told no staff that know him are available at present. Due to his autism, new staff would be a challenge at the best of times, whilst he is unsettled it’s a recipe for disaster. We have no choice but to cancel his stay, the fourth that was co-ordinated with his younger sister.
Meanwhile the list of urgent unattended household chores is getting longer. It’s just not possible keep on top of everything whilst we are stretched so thin. We endeavour non-stop to tame the mess but it doesn’t look like it! We do have some cleaning hours in the youngest’s personal budget but it just touches the tip of the iceberg. Along with the unsettled behaviours comes even more than normal autism related housework, in addition to the usual work that comes with a five person household. Added to which the youngest’s sensory needs means she struggles to cope with noises such as the hoover, clattering pots and pans or the waterpipes clonking as the washing machine and dishwasher fill up. By the end of a school holidays that isn’t made harder because of missing services or behaviour problems the house is always messy and dirty. Hopefully this year we’ll get a chance to clean between the holidays finishing and and our diary filling up with meetings and appointments, but that might be wishful thinking!