This is the third part of Aleesha’s story. It was obvious that Aleesha was unusual when she was born, but the full nature and extent of her disabilities only became apparent little by little. The first part of Aleesha’s story, told by her mother, appeared in the April Webmag, and covered her life from birth to two and a half years old. During the second part in May, Elaine learnt that Aleesha was autistic, and had to face the problems of finding the right type of education for her. If you would like to read the first part click here, and for the second part, click here.
Coping with Communication Problems
Aleesha had now transferred to Pathways, a special needs school, which catered for children with complex learning difficulties, particularly autism. We were experiencing lots of communication problems and this was leading to some extreme behaviour from Aleesha. I was hoping that Pathways would have some solutions.
I had spoken to Dr McFaul, Consultant Paediatrician, about Aleesha and he had referred us to see Professor Reed at Dewsbury as he thought that Aleesha might have needed medication such as Ritalin, commonly used with children with ADHD (attention deficit hyperactivity disorder). He also referred us to the community nurses who dealt with behaviour and complex needs to see if they had any further advice for strategies in the home.
The other children took a lot of this in their stride and I tried to spend quality time with them too, as it was obvious that most of our time was taken up with hospitals and professionals of one sort or another for Aleesha. When the appointment to see Professor Reed came through, I thought we would have something to help Aleesha calm down, but once the consultation had taken place and I had time to reflect, I decided that medication was not the answer for us.
I know for some people it is the light at the end of the tunnel and does wonders for their children. I just did not think it would help Aleesha with the struggle with her communication. I just couldn’t see it helping to progress her, as often these drugs slow responses down. I needed Aleesha to communicate, not slow down. So it was back to strategies and patience.
Aleesha’s care worker had suggested overnight respite. I was all for it, but was not happy for Aleesha to go to a family setting. I know that there are wonderful caring families, but I felt that if Aleesha’s needs got too demanding for a family to cope with, we would face yet another change with her. I wanted a long-term setting that would offer Aleesha a place where she recognised the setting and not just the people. This would help to minimise any long term disruption such as new staff or children. If a family couldn’t cope, she would then have a new setting with new people and routines to get used to, and I felt we needed to avoid this.
So we went to the Panel. As Aleesha was only six, once I had explained my reasons, they agreed with me. We went on a waiting list and after a few months we got a place at Wasdale, a care home for children with complex needs. Aleesha was awarded three overnight stays a month This was just what we needed, as I am told sleep deprivation is a form of torture. I now had planned time with the others, and a chance to recharge my batteries.
We now received a visit from Julie Wilkinson, a Community Nurse. She was brilliant. It wasn’t that she told me anything I wasn’t already trying; it was that she reassured me that what I was doing was right. It just takes time and unwavering commitment to help guide Aleesha in the right direction. Julie has been with us eighteen months and has only just taken a back seat from helping with advice on sleeping and toileting, bringing the school, the respite care home and ourselves all to work on the same strategies. This is vital: it helps to compound and reinforce communication and correct behaviour.
The school worked extremely hard with Aleesha. I had explained that often Aleesha did not respond to small changes. I could easily take her out of routine, so we as a family could go out and have a meal, for instance, with little effect. Aleesha was just noisy and impatient, like lots of children at her mental age of around two years. However, once she realised that this was now her new routine, that’s when she could get difficult, but they had dealt with this every day.
So they were not fazed once Aleesha started nipping, biting and generally being a holy terror. The picture exchange communications system was used at every class, meal or outing. The teachers also sign; in fact they use every form of communication until one sticks, and nearly all the children progress to one that works best for them.
Aleesha’s first year went by, and I did not think that much had changed until we had her review for her statement of educational needs. All children in special needs schools will have one, and they are updated yearly to ensure that sufficient funding and the correct procedures are in place for each individual.
This is when I realised just how much progress she had made. Large chunks of the statement were changed to reflect Aleesha’s growing progress. It was a far cry from main stream children of the same age, but to us it was real. We could look and really believe that we had made the right choice for Aleesha. It was such a relief.
Once started, the progress for Aleesha over the next school year was fantastic. Her toileting had improved and there was only the occasional accident. Her speech was the one area that had progressed above all expectations in such a short period of time. Aleesha now had meaningful words used appropriately, and this helped with her behaviour, as it lessened some of the frustrations. She could say ‘drink’, ‘milk’ or ‘pop1. This was brilliant as we no longer stood for ever in the kitchen, desperately trying to work out what she wanted.
We still did not always get it right. Her Picture Exchange Communication System is still used, as is gesture. These are still as important, but it made a huge difference to the rest of the family, who weren’t always as in tune with Aleesha as I could be. I could often guess what she wanted from the time of day or what she had already had, but for every one else just working out what room they needed to be in could result in Aleesha kicking off before they had got it.
… and Problems
The start of this school year brought some difficult behaviour. There were too many changes all at the same time. Aleesha changed class, she got a new escort and she had different class friends, but we know that this kind of change will affect her within a couple of months, so we battened down the hatches and prepared ourselves. And, yes, it was not good, as this time Aleesha’s progress on her toileting all but disappeared, she ended up incontinent and with severe mood swings, but it was OK because we knew that it would only last a few weeks. I won’t say it was easy; the others had to forfeit days out but we had fun evenings in instead.
So now Aleesha is eight years old. Her mental age is about two years and six months, way behind her chronological age, but she continues to make progress. Aleesha makes us laugh and cry with joy at the simple achievements and milestones that even I take for granted that my other children will do.
I have been lucky. I have meet some wonderful people in the industry of social care. They have above all tried to make things possible, given us the right direction with as little fuss as possible. Or may be it’s just me; I am Aleesha’s mum, so I try to do what I can before I go to them.
I sit back and look at our journey and sometimes wonder how I got such wonderful understanding children. They accept that this is their life. They never wonder why. They just get stuck in and help out. Aleesha tries to play alongside them now and, like all annoying little sisters, she gets in their way, but they all adore her. She has a cheeky character that just draws you in. I am immensely proud of them. Aleesha’s achievements are our achievements; we did it together and we will continue to do so.