06.06.20
Our daughter now has about half the paid care each week that she’s funded for. We reduced her PA team to two as lockdown started to avoid any undue risk of exposure to coronavirus from the PAs supporting other clients in the community. They keep in regular touch, sending phone…
24.12.19
Our daughter has been having a rough time with her health recently and has spent too many days lying on the sofa feeling wretched and unable to do the things she loves to do the most. There have been no trips out to the cinema or cafe for her, no…
11.10.19
Our daughter’s respite breaks stopped a couple of months ago. We’re really missing them. We fought tooth and nail for these when she was little as we were becoming burnt out and needed time to recharge our batteries. It was tough being assessed on our vulnerabilities while everything was still…
23.04.19
There have been changes to our daughter’s team of PAs recently with a couple of new members now on board. They were highly recommended. Finding the right people to support our daughter doesn’t come easy. We always have our eyes out for somebody who can offer intelligent care, is creative…
06.03.19
Our daughter was first referred to paediatric services when she was nine months old. This followed our concerns that she was not reaching her milestones and did not seem to be interested in her surroundings. Despite the many assurances we were given by the health visitor that it was only…
12.02.19
Recently a friend broached the subject of our daughter’s life expectancy. I knew where the conversation was heading long before she asked the question. She just came out with it in the end. I gave a brief answer but didn’t dwell on it. It’s upsetting to talk about and I…
31.12.18
Our daughter’s watching The Muppet Christmas Carol. She’s come back from a Snowman show with one of her PAs and is tired but unrelenting in her desire to keep the Christmas theme going. My partner and I had taken advantage of this outing to do something we couldn’t otherwise do…
27.11.18
Our daughter’s away at respite. The months are winding down and soon she will be too old to go to the centre she’s been to every month for the last couple of years. It’s for young adults only. The time is nearing for more assessments, reviews, wrangling; more looking for…
24.10.18
Some days just don’t turn out as you expect them to. They may require a range of adjustments. You just never know how they will pan out. It’s true to say they can have their ups and downs as well. Take the other day. It was meant to centre around…
19.09.18
Our daughter likes nothing better than a good bounce on her gym ball whilst watching videos featuring her favourite girl bands, animal sneezes or clips from tv programmes past and present. The choice is endless thanks to the wonders of YouTube. Her current preference is anything by Dua Lipa. The…
