Helen cares for her 18 year old daughter Maja who was born with the rare condition Kleefstra Syndrome. Maja has a range of issues, include severe learning difficulties and low muscle tone.
Maya has the mental age of a 4 year old and requires constant supervision. This means she cannot be left alone in the house and needs help with basic tasks such as tying up her shoe laces, cleaning teeth, brushing hair and making breakfast. Keeping Maya occupied and active is also important.
During the day Maja is at school, but like most people there is lots to do and I’m kept busy. In the evenings, unless Maja has an activity, I spend my time helping her. She is like any other 4-5 year old who loves doing puzzles and watching CBeebies, but if we have too many quiet days without activities she can suffer with low moods and demonstrate negative behaviours.
People often don’t understand the term parent carer. They just think, well if you have a child, that’s what you do, and that’s fair enough, but it’s hard looking after a child who has the added challenges of a disability or serious medical condition. Then you’re not only a parent – you also need to be the person who can administer medication; resuscitate, take on the role of speech and play therapist, a specialist in medical procedures and able to perform quite challenging physical tasks.