About three years ago I wrote a piece giving an insight on life with a disabled child, my daughter Aleesha. At the time she was eight but had the abilities of the average two to three-year-old. Her speech was just beginning to develop and she was beginning to play alongside her peers, as a child with complex needs due to a combination of albinism, autism and global delay; this was about the norm.
When I had Aleesha I had no idea just how much impact this tiny new-born would have on our life, but boy did she, from the constant stream of hospital and professional teams that we would see to the overwhelming need to protect and develop her. Some days I had no idea who I was, what I was doing, or where I was meant to be next, but somehow we as a family pulled it all together and got through those first few years, so I just thought that I would give an update as the last three years have proved very remarkable .
Aleesha was eight and things had improved. We had been quite clear from the start that Aleesha would always be treated just like the others. We spoke to her in the same fashion and would take her out of routine often. This appeared to have had a positive effect, as when we needed to take her out of school for appointments and such like it caused no adverse behaviour. I’m not sure that this would work for everyone with a similar condition as autism often requires routine and set boundaries to limit extreme reactions.
She was able to use very simple one-word language and her picture exchanged communication system (PECS) was proving to be a valuable tool, but gesture was still by far the main way that Aleesha got by. Her toileting and social skill were still demanding but again were all on an even keel. As Aleesha was in a special needs school quite a number of the sessions with professionals such as speech therapy, physiotherapy and mobility teams now took place in the school, so I was not under as much pressure to get her to all the hospitals in West Yorkshire, just two or three.
Around this time Dr McFaul, the main Consultant, decided to retire; he had been there since Aleesha had been born so I felt a great sense of loss. The thought of having to build up a new relationship, explaining so that this doctor would understand our journey was daunting. As ever, we knew that this was an inevitable part of a family’s life within the system of care, it does not matter whether it is the medical teams or the social care teams, people move on.
As a family you have to learn to adjust to the ever-changing system, a bit like the needs of your child. Sometimes it’s subtle little things that you haven’t paid as much attention to. Sometimes it’s great big life-changing ones that bowl you over. On this occasion though, I was more affected by Dr McFaul’s departing than Aleesha was and I have felt that ever since, as it was my relationship and rapport with him that made me feel secure. I felt that he took each concern that I had and really listened. He reassured me when it was nothing and delved deeper when he was not sure. I sometimes think that this element of care is missing within the profession today.
At school Aleesha was still continuing to progress. When I said earlier that her progress was remarkable, it was but this was still within the boundaries of her own abilities. As Aleesha made headway towards ten, something was happening: her understanding began to come on in leaps and bounds (well, tiny steps but leaps as far as we were concerned).
Amazingly she also began to say two words together. They were still only meaningful and not in a two-way conversation but it was the beginnings of a whole new understanding of how Aleesha could get what she needed.
The other thing that slowly began to emerge was the want to play with the older children rather than alongside them. She unfortunately didn’t quite have the concept of sharing and playing so this did not always have a good result and the older children could be left feeling frustrated at the constant interruptions from their younger sister, but mostly she made them laugh.
Her eldest sister Laura took up the gauntlet and proved a real inspiration in helping Aleesha’s development along with myself we sat doing colours and numbers and, guess what, she can now count to five, although her colours have proved difficult. We are now beginning to think that this could be that she is colour blind rather than not able to tell us which colours are which, one for me to take up with our consultant in the next routine visit I feel.
We worked hard with Aleesha and one of the most significant things to happen was when she began to use our names. She started to call me mummy and really understand who I was. She also started asking where people had gone, so she was now aware when people had left the room. Her improvements in understanding happened in small bursts as if she had mulled it over and suddenly it all made sense. This, however, has always seemed to happen after Aleesha has had a period of unsettled behaviour. This pattern has continued.
We had been seeing Dr Simmons, her Consultant Ophthalmologist since she had been born but once again a change in doctors was to happen. Aleesha was passed to Dr Long’s team as they were linked to the geneticists. During one of her routine visits the genetics team asked if we would be involved in a nationwide study of children with no true diagnosis. Should they find that Aleesha had one syndrome as earlier professionals had suspected and not several unrelated conditions this might be used in the future. This of course would not alter anything for her as specialised schooling and constant care would still be required regardless of what label she was put under. Aleesha, Alan and I had DNA samples taken; they were sent off, and we now wait to see if anything comes from it, although we had been warned it could take years.
All had been going well but I knew that this could only last so long, as Aleesha (now eleven) had recently changed to her final year at primary school, so had gone into the links class. This was a sensory-based learning group and anyone with a child in their final year at school will know the big changes as they head to high school. A child with significant learning disabilities needs lots of time to take on board what is going to happen, so the process for the high schools comes with the parents’ involvement much earlier, as the school the children change to needs to be carefully chosen to meet their ever-growing needs: not something I was looking forward to.
In the October, Aleesha began to show the first signs of stress. Her continence had gone backwards again: this for Aleesha was always a clear indication that all was not well. Her behaviour was also up and down with uncontrollable crying and hysterical bouts of laughing. Something about this was different. I tried to keep a check on what was happening and I noticed a pattern emerging - oh no, this looked like the very early signs of puberty showing.
Over the course of the past few months Aleesha was now able to name people at school. She would ask where they were and was sometimes aware when they had gone on respite care for an overnight stay because they had their suitcase with them. This was how we had become aware that some of Aleesha’s behaviour was due to a clash of personalities with another child in her group. Aleesha had begun to mention a boy by name more than the others. She had said things like “pulling my hair”. After a couple of weeks I contacted the school and the problem was resolved. Aleesha moved to a calmer class; this proved to be the right decision as her moods began to improve almost immediately. We now had a clearer pattern and other signs to show that I was right: puberty was imminent.
Aleesha was now showing real signs of change across all aspects of her development. With all of our encouragement and the constant input Aleesha began to give us cuddles and kisses without prompt. She also began making independent choices for tea: she will regularly request chicken or mince and another wonderful skill was the development of her imagination, pretending to have cups of tea or have a ‘poorly’ and need a plaster. These are all skills appropriate to a three to five-year-old and Aleesha still needs constant care.
Her toileting and self-care skills are emerging but by far the biggest change is to her speech. She can ask questions and make choices. This still needs to be backed up by PECS and gesture but these are no longer the front runners to her communication but the side lines to promote it. Her sisters have made what I feel to be the biggest difference by allowing Aleesha the room to grow by just letting her be a part of everything they do, giving her the chance to develop and helping promote the ever-changing skills that have galloped to the surface during the past year.
The next phase of development holds all sorts of challenges for us as a family. Teenagers are testing at the best of times, so life with a teenager with complex and challenging needs will, if nothing else, keep us on our toes. Here goes the next five years. We’ve buckled down, we’re holding on and we’re ready for the adventure that is our wonderful daughter Aleesha.