Don’t waste Emily’s life


A mother fears that all the progress her daughter has made at school is about to be thrown away 

My daughter Emily is 14. She was diagnosed with Di-George syndrome (chromosome 22 deletion) at the age of three. She suffers with extreme anxiety, obsessive compulsive disorder (OCD) and attention deficit hyperactivity disorder (ADHD), and she displays autistic traits.

Emily has had a statement of SEN from the age of three and she remained in mainstream education with one-to-one support until she was ten. At the end of Year 5, Emily transferred to a specialist educational provision. I have been nothing but pleased with Emily’s education to date. The expertise, hard work and dedication of all the staff have increased Emily’s independence, self-esteem and confidence and reduced her anxieties.

She has been provided with a varied range of experiences and has blossomed. However, I fear that this is about to change. Having attended Emily’s Year 10 review and researched post 16-provision for her it seems her options are extremely limited, to say the least. Emily will not be able to stay at the setting she is currently thriving in, as its post-16 provision is for the neediest young people who are unable to access any other courses. This provision is, of course, essential for these young people. However, young people like Emily, who are able to access outside providers, have been left with minimal options. It seems that the most likely provision for Emily will be the local college, which runs a foundation learning course. This is only for three days a week, though, while those in specialist settings are entitled to five days a week in education.

I enquired about what provision Emily could expect for the other two days, wondering if a work placement or social integration activities would be made available, but apparently they will not. I was utterly horrified and disbelieving. In fact, most parents in this situation have to change their working arrangements. Apart from the obvious financial implications, I wonder how on earth it will help Emily to continue to make progress in the world, a world that is already a daily struggle for her to comprehend. Maybe it is appropriate for her to be in college for three days but it certainly is not appropriate for her to be cast aside and have no provision made for her for the other two days a week.

It seems that someone, somewhere has decided that, rather than helping her to gain valuable, transferrable life skills and work experience, it is more appropriate for her to remain at home with a parent, becoming dependent and losing confidence and self-esteem. Should all the hard work, dedication and perseverance of both Emily and her teachers, to develop her independence and confidence, be allowed just to slip away? These are qualities and skills that have taken years to nurture, but they will be lost in a very short period of time and I fear the damage done will be irreversible.

Emily is being made to fit the mould of an “average” young person, but this is simply not appropriate for her. The attributes that most children without SEN achieve independently – such as gaining work experience and independence – Emily cannot develop without the right support. It is as if Emily simply doesn’t matter for two days a week.

I decided to enlist the help of my MP and the local press to try to ensure that young people like Emily are given the best opportunities in their lives, and I organised an online petition to this end; within the space of a week it had attracted a thousand signatures and comments from others experiencing the same problems.

Emily and the many other young people in her position should be given every chance to get the support they need (and deserve) for transition to the adult world. With this support, I believe Emily has every chance of employment and independence. Without it, I fear she will very quickly lose valuable skills and all the progress she has made at school will be wasted.

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  1. I am a parent of a child with a multiple diagnosis, and in addition a curriculum coordinator for the supported learning department in a local college. This year we are rolling out a 5 day provision, for learners like Emily (and my son in a few years) who do need support with their independence, travel training, budgeting, finding part time work, etc etc. I hope this gives you hope, that you may find something to suit your situation


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