Both boys have severe autism, severe learning difficulties and developmental delay. They are unable to communicate verbally and require care 24/7. The boys also have complex sensory needs and challenging behaviours. Neither has any sense of danger and Joel is a budding escapologist, so their parents need eyes in the back of their heads along with an electronic alarmed lock on the front door. Thomas sleeps very poorly and is often awake for hours through the night, so sleep deprivation has become a way of life for Mum and Dad.
Joel loves his iPad, which helps him communicate, and he enjoys surfing YouTube. He also enjoys Fireman Sam, Toy Story, Bob the Builder and Charlie Bear. Thomas also loves his iPad and playing with ribbons, and is a Thomas the Tank Engine fan. Like many autistic children, the boys have a limited diet. Joel’s favourite foods are rice cakes and roast chicken; Thomas’s are chips, chocolate and chicken nuggets.
Joel and Thomas currently attend a local authority special needs school (where they have been since the age of 4), but this school can no longer meet their educational and developmental needs. Joel’s temperament has seriously deteriorated since the beginning of the new school year in September. He is clearly no longer happy at his school and gets very distressed in the morning, displaying huge anxiety and a big increase in OCD behaviour patterns. Having refused to go to school in the usual minibus yesterday, even after Joel’s Mum drove him to school (with his two year old brother James in tow), he was still very distressed on arrival and reluctant to go inside. His poor Mum cried all the way home.
The boys’ parents are remarkable and selfless people, who face multiple daily challenges and stresses with unconditional love, patience and humour, but they are very concerned for Joel and Thomas’s future and wellbeing. It is heart-breaking for them to watch their boys have tantrums and meltdowns and yet be unable to articulate the cause of their distress. They have identified an amazing school that specialises in educating children with pre-verbal autism such as Joel and Thomas, and places particular emphasis on sensory needs, which is vital for both brothers.
This school has assessed both boys and feels it can meet their needs, not only educationally but also help them develop essential life skills like toilet training. (At present despite their parents’ exhaustive attempts both boys are still in nappies). The school provides a wonderfully supportive and nurturing environment in which Joel and Thomas could really thrive and flourish.
However, because the school is independent, the local authority has declined the placement and is favouring another maintained special school, which isn’t able to offer Joel and Thomas the therapies and environment they so desperately need.
For years, I have observed the ongoing and exhausting struggles and battles Joel and Thomas’s Mum and Dad have faced at every stage of their boys’ development, often having to jump through numerous hoops simply to secure the services and benefits for which the boys already qualify. They now have to go through a tribunal, for which they have had to instruct an Advocate to represent them. As part of this process they will also need to commission private expert reports from a Speech and Language Therapist, Occupational Therapist and Educational Psychologist to provide evidence to support their appeal. The estimated cost to the parents for this is a minimum of £10,000.
Joel and Thomas's Dad works as a school nurse in a special needs school. Their Mum - an Occupational Therapist - is at home with their little brother. The family have some savings set aside to help with this costly process, but it strikes me as very unfair that they should have to incur such eye watering costs and so much additional ongoing stress to access the education that their two gorgeous boys richly deserve. Like all children, Joel and Thomas have huge potential, but this cannot be unlocked and fulfilled at their current school, nor at the school the local authority is now suggesting.
This family really needs a break and as both friend and Godmother, I’m appealing for help to make their lives a little bit less stressful and a lot more hopeful.
I'm launching this campaign with the family's blessing. Please feel free to share this as widely as possible. Thank you.
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