A simple blog bringing together the collective thoughts of three mums. We all have children with a diagnosis of Asperger’s Syndrome.
Our children needed just three things. They needed to be believed, a few (mostly free) accommodations and for their school staff to work closely with other people who understood their needs.
The failings in the system meant that this didn’t happen and led two of our children to be admitted to inpatient psychiatric units (at ages 9 and 12). We now each have a child who needs specialist residential provision. This is something that we feel could have been prevented if some basic support had been provided, within a culture that was genuine about multi-agency working and close working practice with families. The cost to the public purse of the school fees alone for three of our children is now more than £600,000 per year.
We have learnt such a lot during our individual journeys! We hope to be able to share this and provide information and reflections that will help others along their own individual paths.
We welcome feedback and comments 🙂
Mum to Lily and Peter was a Senior Manager in the NHS until working and looking after a rapidly declining son at the same time became untenable. She has an interest in the implementation of Public Policy – Particularly in Health and in Education. Before having children she gained a MSC (with distinction) in Public Sector Management; choosing to focus on the implementation of public policy in particular.
Having worked as a specialist nurse in cancer care for many years and been part of a growing culture of multi-professional care she craves that same experience of mutual respect, learning and sharing to be experienced in the provision of Special Educational Needs; in particular in the mainstream setting.
Peter is 2 years older than Lily. He has precocious cooking skills and a fantastic sense of humour. He is bright and ambitious. He has diagnoses of Asperger’s Syndrome and Dyslexia along with other difficulties with sensory processing and visual motor co-ordination.
Lily has grown up watching her brother’s difficulties and how those around us have responded. She has seen people help and she has seen people use their power and authority to make things far worse. The impact on her has been immense. Thankfully we are all “pathologically optimistic”!
Mum to DJ, Velcro and others is known to her family as “sqidgeymamalovergirls” and tbh it fits 🙂 Along time ago before kids, before SEN, before it all, I had a goal for my husband and children and me .. All I wanted was to feel loved, have fun and be happy.
“Families are like the branches on a tree, we grow in different directions but our roots remain as one”. Love to you and yours<3
Rosie and Jo’s mum. I worked with young people with disabilities before having children, when I became a childminder. Rosie was diagnosed at twelve years old with Asperger’s Syndrome and anxiety. After one year out of school, three years in a dreadful autism base where her support was erratic and inadequate and two years in a marvelous mainstream sixth form where she blossomed, she is now thriving at university, studying a highly academic scientific course, has a job, a social life and two wonderful hobbies.
Jo, who, like her sister, is quiet, compliant and anxious, was diagnosed very soon after her older sister, at seven years old. Years in maintained schools with unmet needs, a short period in a mainstream independent school, in which she was abused by staff and a year without school provision, have led to repeated hospital admissions and a long list of autism, trauma and anxiety related diagnoses.
Our third successful appeal to the SEND tribunal resulted in a 38 week LA funded placement in a fantastic specialist independent residential school where she is surrounded by peers who are just like her. She is now happy and thriving, studying early for GCSEs and loving life again.