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We have two children with Fragile X Syndrome. A daughter Abbie and a son Ben.
Whilst Ben has a much more severe learning difficulty and attends a Special School in Cheltenham, Abbie attends a mainstream primary school. However, Abbie has always struggled with her school work from day one.
The Reception Class teacher first observed Abbie’s learning difficulty and from then on she was placed on the School Action register and had input from the schools Special Needs Co-Coordinator (Senco). Abbie was severely shy and would not speak to the teacher or indeed offer any input at all in class discussions. It was not easy for Abbie to make friends, which made her quite isolated socially as well as academically.
Abbie was late in reaching developmental milestones and was being monitored by various Health professionals – Eye specialist, Paediatrician, Health Visitor, etc. As Abbie was our first child we did not comprehend her difficulties would be any more complex than a ‘slow developer’. That was until her brother Ben was diagnosed with Fragile X Syndrome in April 2002 and then she was diagnosed in July 2002. This diagnosis now gave us a cause for all of Abbie’s struggles and even her Head teacher was grateful for this ‘answer’.
I now started ‘campaigning’ if you like to get Abbie a Statement of Special Educational Need in order that she should get extra help at school. Our main concern (aged 9/10) was now secondary school and the thought of how she would cope if she did not receive support now!
It was so easy to get a Statement for Ben, but he was automatically assumed to go to Special School and so it followed that he was supported in this transition.
It was always a fight to persuade the primary school to put Abbie forward to the LEA for a Statement, as they said she was ‘too good’ compared with ‘standard’ children who have more severe needs. At one point I was actually told by the school Senco that if I pushed to get extra help for Abbie, then I would be depriving another child of support! I just could not believe what I was hearing and I actually became so despondent that I did not make much more effort for about a year later until I felt much stronger to take on the school and the LEA. By this time I had read up on a lot of information, made numerous phone calls, attended thousands of meetings and finally the school said that I should self-refer Abbie for Statutory Assessment which hopefully would lead to a Statement of Special Educational Need, purely because of the Fragile X diagnosis. Talk about passing the buck! They were obviously already overworked by their special needs numbers at school so I had to start the ball rolling!
The thought of transition to Secondary School really kept me going towards gaining extra help now rather than later. I had tremendous support for many people including Lynne Zwink, Marie Williams via information and phone calls. Our local Parent Partnership Service was also invaluable for advice and support on SEN Code of Practice legislation.
Also, I managed to get supporting letters from the Geneticist who diagnosed Abbie, her Drama teacher, and the Chair of our local Carers and Families group. The Primary School even gave supporting evidence, such as reports from the Senco and Head teacher which all confirmed Abbies’ level of need. We had to have reports from the Educational Psychologist and Speech and Language Therapist. A Medical Officer had to examine Abbie and complete a report to the LEA. I had to compile a virtual life story on Abbie in the form of a Parental Contribution Form and this took quite some time as I had to include every piece of information which would persuade the Local Education Authority to consider extra help at school. Abbie even wrote down her views on a piece of paper which I attached to the report. She explained simply why she did not like school and what she could not do and also what she liked. I was worried that the LEA thought I might have put her up to the write up she used, but it was not the case! She was telling it how it was.
In all this took about 6 months which is a legal framework for Local Authorities to work to, when carrying out Statutory Assessment on a pupil with special educational needs. After several phone calls and negotiations with a very helpful Education Officer we finally received a final Statement of Special Educational Need in December 2004! Hooray!
It was very stressful I have to say, but I am so glad we persevered with it. The only stumbling block was that they would not at first include specified hours, so I was determined to have this stated in the document and we got 7 hours of support from a Learning Support Worker/Teaching Assistant per week. These were broken down to 2 ½ hours spent on Literacy, 2 ½ hours on Numeracy and 2 ½ hours on Social Skills. The time on Mathematics is invaluable as it is her greatest difficulty and also Social skills involve Peer Mediation and observation of Abbie at playtimes and full encouragement and support with her friends, which is fantastic.
The other negotiated item was a Home/School Diary which the school eventually agreed to and which is now invaluable as I know what she has done at school and I can now work with them and Abbie at home. The only hurdle we face now is getting the school to agree dates for review meetings to discuss Abbies’ IEP targets (Individual Education Plan).
In conclusion, today Abbie is much more confident and reassured to know that she will receive help from the support workers at school, one of whom she describes as a “kind lady” until she annoys Abbie in some small way then it is a different story!! Nowadays, she is more willing to carry out her homework a bit more independently at home but still insists I sit with her just to reassure there is a body present in case she goes wrong! I keep instilling in her that a mistake shows she has tried and her best is all that will ever do, but as with many Fragile X girls they need constant reassurance and praise, which we unconditionally give. She seems to have blossomed socially as well. She has joined a local Brownies group and continues to enjoy weekly Drama classes as does her brother (age appropriate classes).
We are told by the LEA and school staff that we will have stronger preference in her choice of Secondary school when the time comes, because she is Statemented. Otherwise, Abbie could have gone anywhere they chose for her, which would have been worrying. Now we are working towards liaising with the local Secondary schools to ease the Transition in 1 year’s time.
I can only reiterate that for girls with Fragile X Syndrome be it milder than their brothers, that they still vitally need ongoing educational and emotional support and we as parents are the ones to help them achieve their potential. I found it was a frustrating journey because she was always on the borderline of receiving help, but if anyone else is in this situation I would urge you to carry on and fight until you get what is required for your children (especially girls).
Good Luck!
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