Alyson Farrell from Surrey explains how SeeAbility helps make life a little easier for her daughter Ellie, 11
The challenges of caring for a child with complex special needs are many and can put huge pressure on family life. Time spent travelling to, or waiting for, medical appointments is stressful for the child and incredibly time consuming for the parents, who often also have other children to consider. Ellie, 11, has congenital cytomegalovirus (CVM), a common virus that can be passed from mum to baby either during pregnancy, when the virus passes to the baby in the womb, or after birth, when it may be passed via breast feeding. In most cases, there is no damage to the baby, but one to four babies in every 200 will be born with congenital CMV.
Ellie has lots of hospital appointments with a long list of specialists – a developmental paediatrician, physiotherapists, occupational therapists, speech and language therapists, dieticians, audiologists, gastroenterologists, orthopaedic surgeons, general paediatric surgeons and eye specialists.
A common side effect of congenital CMV is sight problems. These may not occur immediately and can happen gradually. As Ellie doesn’t speak, all communication is through facial expressions and her eyes. She expresses her choices with her eyes, and at school she uses eye gaze technology to demonstrate her understanding of what is being taught. Her eyesight isn’t too bad – she’s mildly long-sighted with a slight squint – but she does have visual processing problems, where her brain struggles to process what the images are. Her glasses help her to focus on any close-up work, but Ellie can’t tell us if her vision is blurred, or if her eyes are sore, so she’s been having regular check-ups with an ophthalmic surgeon –typically at a hospital – since she was diagnosed at ten months old.
I generally collect Ellie from school to attend a hospital appointment, and this usually includes driving around the car park to find a parking space that can accommodate our wheelchair-friendly car. Ellie is smart and therefore aware that some of the appointments may involve a degree of pain, so she gets anxious, and as we are hardly ever seen on time at the hospital, this causes more unnecessary upset for her. Although the doctors and specialists caring for Ellie are all kind and committed, we rarely see the same doctor twice, which means we can’t form any kind of relationship.
Ellie’s older brother, Tom, 14, has been a godsend. She absolutely adores him, probably because he’s so understanding and attentive towards her. Tom has been to many hospital appointments and sat in numerous waiting rooms for countless hours and he’s never once complained. Ellie’s condition also means we’re very restricted on where we can go for holidays and family days out. My husband Paul and I don’t just worry about Ellie, but also about not being able to spend as much quality time with Tom, or do as many fun things with him as we would like.
We’ve been lucky enough to get a place for Ellie at Perseid School in Surrey, which specialises in teaching children with learning difficulties and complex medical needs, but a typical hospital appointment usually takes half a day out of school time, which means her attendance isn’t good. Last year, she had a lot of time off when her weight dropped dangerously low and we had to prioritise her feeding issues above many others. This meant that the non-urgent appointments then had to be postponed, a cycle that we repeat quite often due to Ellie’s complex condition. So, we were delighted when, in 2013, we learned that SeeAbility would be visiting Ellie’s school to pilot the idea of tailored, expert sight tests for children with complex special needs during the school day.
Ellie was one of the first children to be seen by SeeAbility, and she has developed a bond with the staff, who are all caring and lovely. If she’s having a bad half hour, they will see another child and come back to her. What’s more, it only takes around half an hour and means that she doesn’t have to miss lessons and have the anxiety of yet another hospital appointment.
The last time Ellie had an eye test at school with SeeAbility, they changed her prescription and her glasses. The first I knew about it was when she came back from school with a new pair! The staff are so helpful and efficient, they’re passionate about providing the best service possible. I’m an advocate for sight tests to be done in all special schools and hope one day that this incredible service is available to all who need it.
Life for Ellie isn’t as bad as some. When we got Ellie’s diagnosis, the doctor explained to us that although she was born with the virus, it has now gone so she’s not ‘sick’ at all and won’t degenerate. Everything she learns to do now will stay with her, she won’t lose the abilities she has, and although her progress may be very slow, she is improving, so the future is actually quite positive.
I’ve learned that when you’ve got a child with special needs you should take every opportunity to make life that little bit easier for yourself and your family to take the pressure off. Four years ago, we admitted we needed some help caring for Ellie, for both her and Tom’s sake. We used some of the funding towards her care to pay for a part-time nanny, which meant that a few evenings a week someone else gets Ellie ready for bed and reads her a story, so Paul and I can spend time with Tom. Even if it’s just picking him up from sports practise, it makes such a difference not to have to take Ellie in the evenings after school when she’s tired. And that’s another reason why SeeAbility’s initiative has meant so much to our family. It has given us that little bit more time together, and nothing is more valuable than that.
This autumn, the charity will test their 1,000th child with learning disabilities, making the SeeAbility sight testing programme the biggest global study of its kind.
Total Raised: £56,036
- People with learning disabilities are more likely to have sight loss and less likely to get the help and support they need. SeeAbility have been supporting people with sight loss and multiple disabilities for more than 200 years.
- This month marks the fourth anniversary of the SeeAbility sight testing programme that money from the Candis Big Give is helping to fund.
- SeeAbility are currently running this programme in nine special schools, across London, Buckinghamshire and County Durham. This year they have also started testing in Oldham, Greater Manchester.
- SeeAbility work with individuals to realise their potential and help to fulfill hopes and ambitions.
- – Visit seeability.org for more information