Anonymous.
We sought a diagnosis for our son when he told us that he wanted to die, aged 8. He said that he was always being shouted at by his teachers and that it would be better if he wasn’t there. Several months and a lot of heartache later, he was diagnosed with Asperger’s syndrome and we started our journey to understanding and communicating better with our son. I attended Time Out classes, run by S (of the ASCSS) and specialist Health Visitors at Seaside View. I thought S was wonderful – she was so incredibly knowledgeable and compassionate and I lapped up all the invaluable information she taught me and the 6 other parents who attended the course with me. The best part of the Time Out course was learning how my son views the world, why he does the things he does and thinks the way he does. Most importantly I learned how to communicate with him and our relationship became closer again. School became easier for him by then, the shouting stopped and sensory breaks started, he became happier. I attended the ASCSS coffee mornings, where I learned more about ASC in a supportive and inclusive setting.
My son’s transition to secondary school was too much for him, I had to collect him from school on the second day as he was so distressed by a fire alarm practice, being in a strange environment and hardly knowing anyone. He then became a school refuser and I just couldn’t get him into school for the next few days. M (of the ASCSS) arranged a meeting at the school with the SENCO and a TA, which my son also attended as he trusted M, and together they set out a plan to help him build up his confidence go to school. It took over a term to get him to access the full curriculum but, with M’s expertise and advice to his teachers, he gradually added a subject a week to his timetable and started relaxing. However there was one lesson that he was close to melting down in and frequently refusing to go to. The teacher was convinced that he just wasn’t stimulated enough, that he needed to be right at the front of the class and become more involved but my son was getting more and more panicky about the lessons. Mary supervised a lesson and discovered that the teacher (who was very well intentioned) hadn’t realised that my son had shut down, that the sensory input he was receiving was way too much. That teacher wouldn’t have referred my son to a specialist advisor under the new system because she thought she was doing all she could. During my son’s school refusals, and there were many more than the first few days, I relied heavily on M for advice and support and I’m sure that if she hadn’t intervened my son would not have been able to access mainstream school and would end up in a specialist setting, costing the local authority far more. He talks to Mary once a term and she keeps him on the right path and listens about any concerns he may have. He knows that she’s there to help him when needed and this matters a great deal to him.
Michelle and Samuel’s story
My son Samuel was born almost nine weeks early, which meant that he suffered a developmental delay which, we were told, would begin to level out around the age of two. As Samuel approached three, we became increasingly concerned by the gap between Samuel and his peers, which appeared to be widening rather than closing. We were extremely fortunate to have a wonderful SENCO at his nursery, who also saw that he was struggling and referred him to PRESENS, who were quickly able to provide specialised one-to-one support for Samuel at his nursery, and who set us on the path to Samuel’s ASC diagnosis. When Samuel was formally diagnosed at five years old, we were not surprised but devastated nevertheless, and at a complete loss as to who to turn to for help. At that point, the ASCSS stepped in, observing and assessing Samuel at school and providing expert support to his teachers which in turn enabled them to help him. On a personal level, the ASCSS also gave me support, knowledge and direction through the Time Out course which it runs in conjunction with specialist health nurses from Seaside View, and through the regular coffee mornings it holds to support and inform the parents/carers of children with ASCSS. It was here where I made friends with other people in the same situation as me, where I learned everything I could about my son’s condition and strategies to help him, and us, cope with his difficulties, and where I could listen to talks and presentations by other autism specialists and organisations that offer support, and where I learned about the local authority’s duty of care to my son. The ASCSS has empowered me to become the best parent I can be to my son, and has enabled him to access education in a way that he could not possibly have done by himself. Samuel, his family and his teachers will be dependant on the ASCSS in so many ways throughout his education, and it is unimaginable to think that he and hundreds of other children like him may have to countenance a diminished service as a result of proposed funding cuts. Children with special educational needs and disabilities have the same rights to education as everybody else, but if the organisations that exist to help them are not properly resourced, those children are facing a bleak future. I sincerely hope that our local authority will reconsider these proposals and not take steps to reduce the service provided by the ASCSS and other essential support services in Brighton and Hove.
Maggie and her daughter’s story.
My daughter is now an adult, but without the support of the ASCSS she would never have coped so well with her Aspergers’ diagnosis. There was no support given from CAHMS at all after diagnosis, in spite of four hour meltdowns at mainstream school on a regular basis, but A [of the ASCSS] explained things to her and set up a friendship group, all of which helped and made a difference to her. How can they even think of losing all this expertise that children so desperately need? They are not taking into account the long term effects of good support, that make a difference later on in life too. My daughter has also accessed the Youth Service and for nearly a year had a one to one Youth worker, C, help raise her confidence and give her support in going out and volunteering. You can’t quantify results like this in a tick box culture and cost cutting exercise. But the long term benefits have been immense to our daughter.
Jennifer and Emma’s story .
I’m horrified at the planned cuts. I’m sure you’ve had lots of people reply with their stories but I’d like to add mine. It’s not particularly “high profile” but I think it highlights the impact that the ASCSS makes on a daily basis.
My daughter has high functioning autism and it is not always obvious that she has a disability. Because of this, her teachers tend to forget that she can struggle in the classroom environment. Emma tends to gradually withdraw from the class, not engage/participate and becomes a “blank wall” as one teacher put it. Last year, when Emma started in year 6, her teacher didn’t seem to understand her disability. She dealt with her in ways that only served to isolate her further. S from the ASCSS went into the school and gave the teacher some training. It made a massive difference! Emma responded well and ended up achieving Level 5 in all her SATS. Had it not been for S’s intervention, I think Emma would have struggled in her final year at primary school.
Emma only received her diagnosis 18 months ago. The ASCSS has been wonderful in helping both me and Emma in dealing with the ramifications of the diagnosis. A took Emma on a transition visit to her new secondary school in July. She was so reassured by the visit and how Alex made her feel. In fact, she has settled into life at secondary school amazingly well and absolutely loves her new school. I am so grateful to A for taking time out of his busy schedule to spend time with Emma and liaising with the SENCO. It’s these small examples of things they do everyday for so many children that makes a massive difference to not only the children but their classmates too.
Laura and Alex’s story.
My son Alex (4) has only just recently been diagnosed with ASC. The early invention that he has received so far from PRESENS has been so crucial for him and I don’t think we would have got such an early diagnosis if it were not for T (PRESENS and her close workings with Alex and his preschool. Her support and expert knowledge has made sure that Alex did not, in her words “slip through the net”. Because he is high functioning, I believe that without specialist knowledge from people like PRESENS and the ASCSS, children like him will not receive the early diagnosis and structured support that they need in order to make their transition to school a happy one. PRESENS have also supported me and helped me to get my head around this diagnosis which is a life changer for all my family. The transition to school for all parents, including those without a special need, is one that stirs up anxiety and fears about how their child will settle in and what the future holds for them. After Alex’s diagnosis I felt somewhat reassured that throughout his school life he will be supported by the ASCSS and that as he grows and develops and his needs change that they will be there to advise and assist with any hurdles that come his way which undoubtedly they will. Now this service is being drastically cut, what support can I expect for my son from a diluted service with no specialist knowledge available for us to make sure his school years are successful socially and academically, which is what every parents wants for their child don’t they? Alex is just starting his journey into education and so far he is thriving thanks to the support from PRESENS and ASCSS, my heart feels heavy at the prospect at this being taken away from him.
Anonymous.
I don’t have a long story. My interaction was the ASCSS has not been extensive. Sometimes a 10 minute telephone conversation (which is what I had) was all that was needed. But that telephone involved someone who really understood the issues involved. Most parents worry a bit about their child transitioning to a new school; it’s a whole different level of anxiety when you know your child doesn’t even recognise familiar faces – he can’t tell who is friend or foe or stranger. And of course there were other issues too – sensitivity to noise and significant communication difficulties. Your colleague talked me through the options and how the service could help with that transition. I felt calmer and as a result kept my son at his small independent school and saving the council thousands of pounds. Thank you all for your help. I would prefer my name not to be used.
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