Fighting for support


A SEN system that seemed to work against my family’s needs

My daughter Beatrice is twenty-five and a beautiful young lady. I am so thankful for her, but our journey together has not been easy.

When Beatrice was born with no obvious complications we were overjoyed. At 4.5 weeks however, something didn’t seem right to me and despite being told everything was fine and being discharged from hospital, I returned to the GP who confirmed my fears. Beatrice was re-admitted to hospital, where she had so many seizures she had to be sedated to stop them. She spent the next six days in intensive care and three months on the ward, and it was confirmed that Beatrice was 80 per cent brain damaged with limited vision.

We were then discharged and our journey fully began; our time was spent with therapists and medical professionals, both at home and at hospital, trying to understand the combination of her different conditions: cerebral palsy, epilepsy, visual impairment and learning difficulties. I remember the feeling of being overwhelmed but hungry for information; I wanted to understand her condition fully and how best I could help her. She had these needs, she was going to be different, but she was mine.

With the help of two charities, I started to understand the processes of special education and family support, but it was clear there was limited information and no handbook or directory of the agencies which have subsequently played such an important part of Beatrice’s life. It was a visual impairment therapist who recommended a local school for visually impaired children, that was our first break-through and made such a difference to Beatrice’s life, allowing her to take part in activities with other children like her, and providing fun and the stimulation she required.

Ever-changing struggle

From here, we started the stressful statementing process; I somewhat naïvely thought that as Beatrice was using the drop-in facility she would be given a place at the school, but it became apparent that the process was not about what the child needs and requires but was driven by funding and resources. Another charity helped me raise a tribunal appeal, but the authority conceded and Beatrice spent many happy years at the school until it closed. Beatrice was forced into a mainstream school for two years, as the authority had nowhere else to place her, except a severe learning disabilities school, which I was adamant was not right for her. Beatrice was then placed in another school for children with visual impairment, where she was happy, but it became clear that it was going to be a battle: information was not readily available and the system seemed to work against and not for us.

Each stage of your child’s life is a fight. The decisions you face range from the choice of school, social care and therapy support, to the next stage of your child’s education. What college should they go to? Should it be residential or day provision? On top of all this, there are all the issues around support at home. We’ve even had struggles getting appointments with GPs and repeat prescriptions.

My response to all this was to equip myself with as much information and training as possible; I became a governor of the school Beatrice attended and volunteered with charities. I then became an Educational Advocate to help other parents, as in all my 25 years I have not met one agency or service that can completely support and advise parents, and many of the good charities I have worked with have been closed due to funding.

Our journey together has been overwhelming and lonely at times. It has left me frustrated due to the lack of help and advice given to parents. Despite that, though, I look at Beatrice every day and see the positive impact she has had on my own life. I am the person I am today because of her.

Further information

Devika Lambert is a mother and an Educational Advocate at Changing Lives Now Ltd:

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