My 11 year old son Bastian, or Basti, is a real gem of a boy.  1 of 6 in the world, with a complex Neuro Genetic Disability! (SEDTD5)  He is a very happy and contented child, who uses pranks to overcome his limitations; because at the end of the day, all Bastian really wants, is to be happy and accepted. He refuses to allow his disability to get the better of him. He calls himself differently enabled. He askes: 'Dear Mr Cameron, why can't I, as a disabled child have a choice of schools, just like my main stream school friends?'

Do the Disabled really have a Choice?

Here is a video of Bastian   http://youtu.be/_2hkxIR_sno: 

A Message for Mr Cameron by Bastian: http://youtu.be/n2yLbK5YySo

Follow Bastian and his musings on a daily basis: https://www.facebook.com/BastianWillicott

Medical Info:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3980521/

Bastian’s quick guide: http://sfari.org/news-and-opinion/in-brief/2014/genetics-new-variants-linked-to-intellectual-disability

Sometimes, because of the way Bastian’s brain processes information he often can and cant do tasks both equally at the same time, making it hard for him to ‘function’ in a ‘normal’ capacity.  This is very frustrating for Bastian, because he is totally aware of his limitations yet, extremely intelligent all at the same time.   Professionals call him a true Enigma.

As we face a continued and never ending battle, I/we are pleading with the London Borough of Barnet to allow Bastian to attend and to be transported to The Collett School, who are still waiting for him to start his secondary school pathway.

Bastian Needs:  1) The Collett School in Hemel Hempstead

                           2) Transport to and From The Collett School

 

The Rest of his Needs are met and Paid for by Me, his mother, which includes specialist therapies, treatments and or programmes.

The problem or block we continually face is with our local borough ‘The London Borough of Barnet’ have blocked our every move to Bastian’s new school.  The Collett School as well as Hertfordshire Country Council have accepted Bastian and are waiting for him to attend, however Barnet continually see fit to block my sons wellbeing. The fight has now been 40 months in the making since the start of researching his secondary school placement and continues still to this day.  

Bastian does not fit a main stream school nor does he fit a special school. He does not fit a box of any sort; therefore very difficult when it comes to schooling and or educating Bastian, because there are no benchmarks or tick boxes or tests for a child like my son.   I as his mother know him beyond all measures, I know him in and out and am able to differentiate his needs and his frustrations on a daily basis and know above all what school suits him the best.  I am the expert in my own child.

After 18 months of researching 35 schools, I, his main stream primary school Senco Team and Clinical Team,  eventually concluded with the help of his new head teacher that The Collett School would meet Bastian’s emotional wellbeing needs as well as his specialist school curricular.  The Collet School in Hemel Hempstead is the ideal school for Bastian, upon visiting as well as having open stay days, Bastian slotted in perfectly. A match made for his enigma status. 

The London Borough Of Barnet say that the local school is good enough for Bastian, as most disabled children are the same therefore 'they' can all go to the same school.  Whilst I am not disputing the excellent work done by the local special school; I am disputing the fact that it’s ineffective and not conducive to Bastian’s emotional well-being, because of his indifferent intellectual ability. Bastian’s clinical and medical team all concur that the local special school is not conducive to his needs and therefore back me up.

I have had no option but to home school Bastian since September 2014, because as a caring mother, I cannot allow Bastian to go through any more emotional distress of being in the wrong school.  The London Borough of Barnet refuses point blank to send him to his happy school or school that will best be placed to aid his emotional well being and intellectual abilities.  . 'Not all disabled children are the same'.

Whilst Bastian isn’t able to fully grasp academia, he is able to fully engage and hold a proper and high levelled conversation with his main stream peers, but is unable to cope in a secondary main stream environment, this is referenced & backed up by my own intuition, experience as well as by experts in the medical & educational field; as well as having approached and visited all local secondary main stream schools. 

This whole experience is utterly emotionally, physically, psychologically and financially devastating and heart-breaking for both of us. 

I have been fighting the hardest battle of my life to get Bastian the school he needs and deserves.  Barnet will not provide for him, saying "all disabled children are the same" and that the local school is good enough.  The Collett School is 9 miles further in distance and out of our borough, however we sit directly on the border of Hertfordshire, but pay council tax to Barnet. 

Even though Bastian is thriving in his home schooling environment and has made immense leaps and bounds, he just wants to go to his happy school. Bastian cannot understand why the London Borough of Barnet does not want to understand him, his needs, and his emotional intelligence as well his indifferent academic intelligence.

He continually says, “I just want to be happy Mommy, is that really bad, Is it bad to be happy?”

We are exhausted at fighting our own government, why won’t Barnet listen? Is Happiness based on money? Is grass routes education too difficult for the government to implement?

Bastian is not the only child in this devastating situation, children like Bastian don't  fit main stream or special school, and often the inclusion policies are not always based on helping children who need a school in the middle of both streams. Parents are tired and are beyond exhausted; disabled children (or differently enabled children) are not all the same; they all have voices and the need to be heard.

What is needed for Bastian is a school that will make him emotional stable his where is mental health will be met and where he can be happy and aid his enigma status.   As we face a continued and never ending battle, I/we are pleading with the London Borough of Barnet to allow Bastian to attend and to be transported to The Collett School, who are still waiting for him to start his secondary school pathway. 

All we want is for Bastian to go to a school that will make him emotionally stable and happy.

Let’s all allow Bastian his happy school #SchoolforBastian #HappyBasti

Thank you all, from me Janet Willicott a very proud Mommy

Twitter: @janetwillicott  & Facebook: Janet Willicott