I haven’t written in to the PA Cafe for a few months as life has just had too much going on. So what has been taking up all my time? Well, my daughter was home from residential college for almost 11 weeks, without any additional support. We were her carers, teachers, activity organisers, friends, exercise buddy, therapists and at times just her family. It was hard going for us all, my older daughter and I found ourselves working from home at short notice, in an environment not really set up for it, after all it is our home, not our work place. My older daughter ended up being furloughed for 4 weeks, which helped with the support of my disabled daughter. We used a timetable to help my disabled daughter plan her days and for us to work out who was going to support her and when, this meant we could also have a little bit of time to ourselves or go shopping, complete chores etc. Plus it reduced frustration building up, when one of us felt like we were ‘always’ getting up or doing something asked of us by my daughter.
Although this time had some positives, in that we all supported my daughter to work towards her bronze Duke of Edinburgh award, by her volunteering at home and baking for friends who were isolating or keyworkers, learning new baking skills, and taking regular trike rides for her physical section, there were some definite down sides. My daughter began to lose her independence, she was less able to move about freely and so had to ask us to get things for her, or to at least help her to get somewhere. She became angry and frustrated, shouting at us, crying or just being plain mean, and who can blame her. Due to the lack of exercise and movement she gained weight too and this had a physical impact on her.
Whilst at home my daughter was due her annual review by the social worker, funding on her next year at college would be dependent on this. Due to Covid 19 the social worker was unable to come to the house to complete the review, or visit my daughter at college. She sent my daughter a self assessment to complete. We supported her to complete the ‘activity’, as the assessment consisted of large sheets of paper with headings – Things I can do by myself, Things I sometimes need help with, Things I need help with and stickers of various tasks from all aspects of personal care, to cleaning, going out, using public transport, house security. We then placed the sticker under the heading my daughter thought was the ‘best fit’. This turned out to be a really positive activity, for my daughter giving her the opportunity to think about the help and support she needs and to celebrate the things she can do for herself. She also identified areas she would like to work towards developing her independence. We tried not to influence her responses, as this was her assessment of herself not ours. Once the social worker had received the paperwork, she called me for a chat and commented on how much more independent and aware my daughter had become since last year and after only 2 full terms at college. The social worker then arranged a video call with my daughter who was back at college to complete the review. We are still waiting for the final outcome and confirmation of funding for college next academic year.
The whole assessment and review process was completed remotely. It was a very strange experience, having always had home and face to face contact with such professionals for almost 15 years. The social worker had to trust that we would not unduly influence my daughter, and that college staff would support her through the video call, again without influencing her, and giving her the privacy she needs to talk freely. I hope that this is one working practice that returns to face to face meetings once ‘safe’ to do so.
We made the decision with my daughter for her to return to college early June. We talked about staff wearing PPE, that she would have to keep some distance between herself, staff or friends as much as possible, that some of her friends would not be back at college, and that she would have a different timetable. She seemed pretty much OK with most of this, but the hardest part was explaining that we would not be able to visit and the next time she saw us would be when we collected her at the end of term, which is in 2 sleeps time, as I write this. We have had video calls, phone calls and whatsapp audio messages daily, but we hit a blip 4 weeks in where she was upset and desperate to see us in person. We weathered the storm and came out relatively unscathed.
So I now find myself still working from home, with my older daughter back in the office so commuting daily by train, and my partner recovered from a couple of health issues that was thrown in the mix, preparing for the return of my disabled daughter for the summer holiday. We still face restrictions, like the rest of England, on where we can go, feeling uneasy about eating out, and shopping just for the sake of it. Fortunately we have a self catering break to look forward to that was booked way before Covid 19 landed on our shores, so somewhere new to explore for a week.
The only thing outstanding and may well remain unresolved, is that I haven’t employed a PA for my daughter for this time at home………….