This is the second 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 last month’s Webmag, and covered her life from birth to two and a half years old. If you would like to read the first part, click here.
Aleesha was now two years and six months old. We still needed to know what was causing the problems, so we went to see some specialists to try and decide what the next course of action would be. She had an MRI scan (magnetic resonance imaging) and skin tests, but they did nothing to let us know what was wrong. The geneticist explained that diagnostic techniques were not yet well advanced and sometimes conditions could not be conclusively diagnosed. This was not what we wanted to hear; we just wanted to know what was wrong.
I think we thought that, if we knew, it would make things better and give us closure. You often find it’s the not knowing that is hardest to deal with, – or at least you think it is. As time goes on, you realise it isn’t. It does not matter what the condition is; it’s accepting your life has changed that really counts. Then, regardless, you can deal with the seemingly never-ending problems as they come up.
Aleesha was now three and was due to start nursery. We already knew that she would attend a specialist unit for children with visual problems. It was not a local school, so we needed to find out how Aleesha would get there and back, as my other children were not old enough to go to school by themselves. It was just one more problem that needed solving. All of the day-to-day needs of my family were finely balanced, and it could take something as simple as Aleesha attending a different school to upset it .
These were small worries, though, as Aleesha’s lack of understanding and speech made me nervous. I had no idea how she would cope and how the other children would be. All parents worry when their child is about to start school, but we had so many more things to combat.
The teachers were lovely and tried their best to alleviate our concerns. They told us that Aleesha would catch up quickly with her speech and development. I tried to believe them; after all, they dealt with children with difficulties such as isolation and developmental problems every day. This was something that they helped children to do – to become independent outgoing individuals, so I prayed that this would be the answer, and that Aleesha would blossom, and that my fears that Aleesha had other disabilities were wrong.
Attending several meetings with the school and local authorities sorted the issue of Aleesha getting home from nursery, as we decided that, due to her erratic sleep pattern, it would be easier to have her go in the afternoon, then transport would bring her home.
A Statement of Educational Needs was also put in place, not because of her learning disabilities. That would follow as the school realised Aleesha’s full needs; this was for her safety, and to help her with lessons such as reading. She needed all her work re-done to a visual size that would allow Aleesha to see. It was mentally exhausting. You do not realise just how much work and organising there is to be done for any child with special needs entering school, and the more complex the condition, the more professionals who have to be involved. They each have their own bit of knowledge and somehow the teachers have to make all these into a working package for the individual. This package then becomes the Individual Educational Plan, and Aleesha had one before she even got to her first day at nursery school.
By the time Aleesha started nursery all the specialists who were involved had their own views about Aleesha’s problems. Some said it was a syndrome; others like me thought that she was autistic. We had exhausted all avenues, so Dr McFaul decided to send Aleesha to Great Ormond Street Hospital in the hopes that they would have a better idea.
We met the leading consultant in Britain on albinism. She did some tests to confirm her original diagnosis of albinism, as there are other conditions such as Angelman Syndrome that could present similar symptoms, but Aleesha had got the correct diagnosis, so there was no explanation for the rest of the problems that she had. We were referred to the Wolfson Centre.
At Nursery School
In the meantime her school were experiencing difficulties and it was obvious that Aleesha did not just need time to catch up. Aleesha had had regular speech therapy, and during the past year this had made little impact on her ability to talk. Communication was still mainly through gestures.
Aleesha also had a one-to-one full-time support to help her with every aspect of her day. This would continue into full-time schooling, and we hoped she would still have the same helper, as she had a really good connection with her. Aleesha’s behaviour was also suffering, however, as she struggled to let us know what she wanted, and as for toilet training, this was a minefield! I did not know even how to begin, and again I felt at a loss as to how to make things better.
The Wolfson Centre
Around the time Aleesha transferred to full-time school we had another appointment and had to go back to Great Ormond Street at the Wolfson Centre for Gene Therapy of Childhood Illness. Clair Mushrow, Aleesha’s care worker, attended the appointment with us, as we were not sure what was going to happen or what our reaction would be, so having an independent person would help. Her emotions were not as involved as ours, so she could take in any information and talk it through with us later if we needed to. I highly recommend this, as the impact of your child’s condition can often hit you later when there is no-one to talk to.
At the Wolfson Centre we had two fantastic professionals, Dr Alison Salt and Dr Miriam Bindman. They asked what we thought about Aleesha’s condition, so I told them I thought she was autistic. They explained that they would use varying methods to see if Aleesha displayed enough signs to help them decide what was wrong. They would also use the Reynell-Zinkin scale; this was to help in giving a autism diagnosis.
At the end of the test they indeed gave us the news. I don’t think that we reacted how they expected – no tears, no anger or disbelief just calm acceptance. I think this was because, as we had lived with not knowing for four years, (long before the doctors gave it a second look), that to find out was just a relief. I didn’t think about what was coming in the future. I had been doing that for four years, trying to get Aleesha to the next mile-stone, and to try and have an area that was as normal in our home as any other, so this was just calm acceptance.
The calm comes before the storm, some say, and, oh boy, it was some storm. Aleesha had transferred to full-time mainstream school, so had different teachers, and a new escort to take her and bring her home, so, as she struggled to understand and cope with all this, her moods and behaviour changed. By Christmas Aleesha had unravelled. We went through the worst and toughest period I have had to date with her. I had no idea what to do or how to help. Every one suffered as Aleesha kicked off. She became completely fixated on plastic bags and nappies. Her behaviour was extreme, going from laughing hysterically to lashing out, biting, nipping and kicking every one. She constantly went for Jessica, her sister, who bore the brunt of her moods. By the time we got through Christmas I was completely worn out and the school were suffering too.
Aleesha had gone five and there was a meeting for her Statement of Special Educational Needs, which happened yearly in June, brought forward to March as we all struggled to maintain Aleesha’s needs. She was having 32.5 hours of support a week, which was from the moment she stepped out of my house to the moment she came back. All the professionals had to write statements for the review. There were reports on occupational therapy, speech, vision, hearing and a host of others including autism resource.
They had been brought into this meeting as they were in contact to help with strategies to handle her behaviour, but so far they were having little impact at school. We had seen some calmer behaviour at home, though, as they had now also contacted us. During the meeting they were trying to decide on how to help Aleesha in a positive way, but I just knew it was time to see what other options were open.
A Change of Schools
As she could not cope with mainstream schooling it was decided Aleesha needed more specialised schooling – a blow, yes, but this had to be better than the current situation which had four teachers on rotation and Aleesha sitting at a table on her own, as she was not even close to any of the work the other children were doing. This gap would only become more and more evident as the school years went on. It was most definitely time to move her. It was sad to do so, as the children really accepted Aleesha and loved her to bits.
So there it was; the decision was made. Now it was back to meetings and school reviews to find the best special needs school for her in our area. We visited a few and decided that Pathways, an autistic resource school, would be the place. There were only four to six kids per class and at least three members of staff in each. This was a place that I felt would help Aleesha to achieve.