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My fight for the right education

Posted Wed 29th Jul 2020 at 12:32
by Jess Darch

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After years of trying and failing to get their son assessed for a statement of education needs, extra help or a place in a special school, Stephens parents decided to tell their story to Wales Online “as a last resort to try to get help”.

I’m Jessica Darch, mother to Stephen who's 9 years old and who has a range of diagnosis, the main one being Tourette Syndrome.

I’ve been trying for many years to get Stephen a statement and placement in a specialist education setting. Due to Stephen's needs and having global delayed development, traits of ASD and ADHD along with OCD, anxiety and sensory processing disorder, he cannot cope in a mainstream school as it’s not specialised to fit in with his needs. He also has a condition called Exotropia, a condition causing the eyes to misalign and turn outward. Despite these multiple issues, Stephen has never been assessed for a statement of special educational needs.

Stephen is miserable going to school and we have many a meltdown each morning, causing him to get very frustrated, upset and anxious. Being his parent, I really can’t justify putting him through this each day, to go to school and not learn a great deal just because he is not in the appropriate setting with teachers not experienced in teaching children with his or similar needs. Stephen supresses most tics as much as possible in school. In doing so, he is then not able to cope with the learning and social aspects of school which results in him having a tic explosion when he gets home.

However, since schools shut due to the Covid-19 pandemic we have noticed a marked change in Stephen's behaviour and wellbeing. Stephen is calmer and happier. He has stopped having meltdowns. Although we can’t teach him school work at home, because his needs are so complex, we feel he is happier and has learned more at home playing with Lego and computer games like Minecraft.

Stephen absolutely loves to play on computers and knows a great deal about them - more than me and most of the adults in our family! He's also fantastic at building Lego and even though Stephen can’t read, he follows the instructions visually and completes difficult sets all by himself leaving us all astonished!

We have now taken the difficult decision not to send him back to school when term starts full-time to all children in September. So the fight goes on until he gets what is needed because all children deserve and have a right to an education that suits their needs.

Jessica Darch

Tourettes Action Education Manager Lucy Toghill, will now be offering the family help and support with their education needs.

You can read the 'Wales Online' article here.


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My fight for the right education

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