This is Sian my beautiful, happy, loving 14 year old daughter.
Sian has full mutation Fragile X Syndrome she has severe learning difficulties and Autistic Spectrum Disorder. I have found this hard to come to terms with as I know girls are usually affected less severely, although I realise this must come with its own set of difficulties.
I love the article ‘Welcome to Holland’ by Emily Perl that Simon has already included in the blog. For me it sums up the pleasure and pain of having a child with a disability. It also expresses how lucky I have been in all the people who have come into my life because of Sian.
I began to worry about Sian’s development when she was about 30 months old. By the age of 3 1/2 she had been diagnosed with Fragile X Syndrome. I realise now that we were lucky to get such a quick diagnosis. We were seen by a brilliant Community Paediatrician who was aware of Fragile X Syndrome and told me to insist on her being tested for this when she was seen at our local hospital.
When Sian was 5 we were very fortunate to be funded by our local LEA to teach her at home on a Lovaas programme. This is a language based behaviour modification programme. “If a child can’t learn in the way we teach, we must teach in a way the child can learn” [O Ivar Lovaas]. If you want to know more about this you can contact Peach (Parents for the Early Intervention of Autism in Children) at http://www.peach.org.uk/. Please don’t be put off by the word Autism. These methods can be used with children or adults with all types of learning disability. Sian was on the programme for 5 ½ years. We employed a team of six therapists – who have become close family friends and, without wanting to sound clichéd, gave us our child back. I am convinced that without the programme she would never have been able to access the wonderful school placement she has at the moment. She gained an attention span, confidence and an interest in the world around her, although this is still, and I think will remain only on her terms.
Sian is now in her fourth year at a wonderful school. I love her school because they have a holistic child centred approach to education. They have continued to build on the work started by her therapists on the Lovaas Programme and she is making steady progress. Sian’s teacher, has kindly put fingers to keyboard to explain what it is like for him to have her in his class.
“When I first took Sian in September last year I was a little nonplussed as to how I would meet her needs and as to what progress I could expect or hope to make. She was the first pupil I had encountered who showed no desire to communicate with the others around her. If left to her own devices she would spend the whole day looking at picture books and magazines. She would look at them flicking fervently back and forth through the pages and licking the pictures she liked, thereby ruining for others many of the books she came in contact with.
Her communication was very basic and her targets at the time were for her to communicate using Picture Exchange Communication System (PECS) symbols. I noticed however that she did have a certain amount of speech and decided to try and encourage that. I started out by insisting that she said good morning and worked from there. She can say it quite well but will tend to mumble it incoherently. When spoken to firmly she will use it quite clearly. Her mother told me that she is more capable than you would think from observing her and that she hides her own capabilities. I agree with this as she often achieves things quickly when offered books as a reward. Although she doesn't speak willingly, her speech has improved and her targets are now related to oral communication rather than speech production.
Sian's relationships with the other members of the class were minimal with both staff and peers. She knew another girl in the class from activities outside the school and they would occasionally put their heads together and look each other in the eye. I started to try this with her and she has progressed to the point where she now has moments of being very affectionate with the staff in her class. She will suddenly, almost desperately, ask for a tickle or a squeeze and once this has been given, she will just as suddenly turn off. I believe this to be very good progress as previously she would only do this with her family.
Although it is a challenge, I have enjoyed working with Sian and I am pleased with the progress she has made. I was surprised when I discovered she could recognise her own name in print and I think it remains to be seen exactly what she is capable of.
Finally, it has taken many years but I have come to terms with Sian’s disability. I don’t think this is a gift from God but I feel it is meant to be. Sian has a brother Tom who is 13 and for me he summed everything up when he said “I wouldn’t want Sian to not have Fragile X because she wouldn’t be Sian.”