Naomi House mum, Lisa, has shared with us her experience of caring for her vulnerable daughter, Amelia, during lockdown and the Covid-19 pandemic.
16 year old Amelia has a neurological disorder, caused by a genetic mutation of the HCN1 gene. As a result, she has epilepsy, severe learning disabilities, movement disorder, sensory processing issues, an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy) and she is non-verbal. Because of her complex needs, she has to have 24 hour care.
“For 12 weeks we had no physical care or support.
“We usually have a good care package that includes carers visiting our home and overnight respite, and we’re also used to Amelia going to school, so to have that all suddenly stop has been difficult. Amelia can’t be left even for a minute, so I’m extremely tired.
“Routine is very calming for Amelia, so for that to all of a sudden change has been hard for her. For the first five weeks, she was very agitated, because she couldn’t understand why everything was different.
“She loves to stand, be walked and be in a sling, which she’s used to doing at school. Amelia is a lot bigger and heavier now, and we don’t have the facilities/space, so we can’t do that at home, which has been frustrating for her.
“She’s also a typical teen, so we do sometimes clash, and if she senses that I’m agitated, she’ll reflect that, so I’ve had to try hard to stay calm.
“I tried to find just 30 minutes to to sit in the garden and have some headspace, which has been so valuable. I decided to try yoga, and after doing one class, I felt it helped, so I took on the 30 day yoga challenge, which has been great. I also started a gratitude diary, in which I write down the things I am grateful for, from being able to garden in the rain for just half an hour, or have a 5 minute cup of coffee. I found I was grateful for the smallest of things during such a challenging time.
“We have had emotional support from Amelia’s school - they host regular Zoom calls with her class and send through daily themed activities, including arts and crafts, sensory stories and Makaton songs, which has been great. Amelia has also had Zoom calls with her best friends which has been really beneficial for her.
“We’ve been out for walks every single day, even if it rains. Although we’ve been unable to visit anyone, we’ve had friends and family coming up to the window to see us and leave us cards and gifts. Every Sunday, I also have an hour long Zoom call with a group of mums in a similar condition, where we motivate each other, share experiences and we’re just generally there for each other, which has been a huge help. In some ways, lockdown has enabled me to connect more with my friends.
Since lockdown has been lifted and regulations have started to ease, I’ve become even more anxious, because with Amelia at home with me, we were in a bubble and we were safe, and now, I feel a loss of control. Amelia loves to cuddle and put things in her mouth, so I do worry about that.
“Amelia has just gone back to school, which is worrying, but it’s good for her and has improved her mood and wellbeing already.”
We want to thank Lisa for so openly and honestly sharing her lockdown experience with us. To find out more about Lisa, Amelia and her family, click here to read her story.