Bernadette and Charlotte 

Charlotte is six years old and has her own unique way of communicating. She smiles when she is happy and often has to scream for what she wants or reach out and grab for things. For the first two years I just thought she was a difficult child; I didn’t understand this was her way of communicating.

Charlotte has Angelman Syndrome, a rare syndrome which affects her both physically and mentally and uses a wheelchair to get around. She is learning to crawl and can take a few steps but this is exhausting for her. We are still hoping that one day she will walk so she has got a bit more independence.

She also has mild epilepsy and getting too upset can cause a seizure – she does get her own way quite a lot. When she was little she continually had small seizures which meant it was hard to hold and cuddle her. Life can be more challenging when your child has a disability.

CCS Disability Action first came round when Charlotte was 13 months old. They helped us with exercises to help Charlotte to sit and hold her head, and taught us how to weave these into everyday activities like sitting and reading.

Now when we’re at home during the day at the weekend we put the toys on the floor away from her so she has to figure out how she gets to them. She loves music and anything that makes a noise; she really likes the sound of her feet on the footrest on her wheelchair. We do try to get her to stand on her feet by holding her between our legs so she gets used to standing.

For the first five years of her life, Charlotte had really bad reflux. This was really painful for her and made her miserable but she couldn’t tell us how sore she was. She hated ‘tummy time’ which was an important exercise in developing muscle tone for crawling and walking but it made her reflux more uncomfortable. She didn’t sleep well because of her condition anyway but the reflux made it much worse so we all only got 2-3 hours sleep a night – when she screams you can hear her 2 blocks away! She’s been much more comfortable since the operation for the reflux.

Charlotte needs a lot of one on one support during the day with things like getting dressed and cleaning teeth. Like most children she sometimes doesn’t want to do things. She will clean her teeth at school but not at home!

We have a care worker for a couple of hours a day to help with feeding, dressing and getting to bed. Before the care worker started last year it was hard because Charlotte could take an hour to eat her tea as she has trouble chewing. Now with some support each day I can spend some time with Jacob, my eight year old boy, as well. He’s really great with Charlotte and helps out when I’m getting her ready. They’re just a typical brother and sister, she loves watching him play.

We used to get respite care before she started at school; Charlotte used to spend Friday nights with another family. Now she goes to school, spending time with her is too precious to miss, especially for my husband who works in the evenings and night shifts, so having someone in for a couple of hours of support a day just really helps.