Who we are

My daughter Esja born in 2006 has global developmental delay. I learned about 22 weeks into my pregnancy that her brain contained too much fluid: since then I have spent much time wondering – at times, panicking – about the impact that is likely to have on her quality of life and my family’s future.

Having a child with a disability can devastate even the strongest families. Whatever was difficult before, gets more difficult – especially money and opportunities to work. Even a night off, becomes problematic. You can’t book a night off from worry. It follows you everywhere.

Before having Esja I had little experience of the world of special needs. I did not know about occupational therapists, physiotherapists, audiology tests, statements, Makaton or disability living allowance. But I soon learned.

My daughter saw most of the available services at the Donald Winnicott Centre (now The Ark) and was seen at four of London’s most esteemed teaching hospitals as an out-patient. One of these was only interested in her brain. The other specialised in bones. The remaining two shared feet, stomach, genes and diet. Although everyone was caring and professional, there almost no time to discuss about where their specialty fitted into an overall plan.

Thank goodness, then, for the Ark’s Portage team. Here was a service that worked with us as a family, that fully took on board our capacity to work with them (or otherwise) and, that concentrated on the skills Esja had and worked hard to improve them. And best of all, there was a drop-in! I could meet other parents and begin to feel less isolated.

I grew stronger. I tentatively volunteered to join a committee discussing care pathways. I started going to Hackney Families Together meetings. I found I cared passionately about parents getting lost in the system, unable (because they did not share a language with health professionals) to express what they needed and how they felt. I became a parent consultant and learned about short breaks—very, very fast. Now I chair Hip. I go to a lot of meetings and tell people the things other parents have told me about what it’s like to be the parent of a child with special needs in Hackney. It’s difficult, because whilst health professionals, social workers and teachers opt to work in the world of special needs, parents don’t get the luxury of choice. But Hackney at least feels like it’s ready to listen… most of the time.

Rosie Graham lives in Hackney with her husband and three children

I have three sons, the youngest of whom is severely autistic and attends the Autism Resource Provisions at Millfields Community School in E5. I’ve known two of the founders of HiP for years! You can see a picture of my youngest son here - he doesn’t spend all his time in graveyards, honestly!

I work for a law firm in the centre of London, which does limit the amount of time I can devote to HiP, but I am the independent parent representative on the Steering Group of the Parent Partnership Service (PPS) in Hackney.

The PPS is a confidential service offering information, advice and support to parents/carers of children with Special Educational Needs (SEN) and disabilities. You can read more about the PPS here . If you have concerns that you think I could usefully raise with the Steering Group of the PPS, please contact me on info@hiphackney.org.uk.

Amanda Elliot lives in Hackney with her two children, Calum, 11 and Maisie 8

My son has Asperger syndrome (AS) and challenging behaviour. I call it an invisible disability because to the untrained eye, Calum looks like a ‘normal’ boy. But beneath surface is a distressed and confused person who becomes exhausted with the effort of trying to make sense of the world and make his way in it.

My children attend Millfields Community Primary School. Like lots of other mums, I juggle full time work with caring for my children. I am also a member of the Millfields ASD parents group. I gave up my 20 year career as a healthcare journalist two years ago to take a local job because my son was experiencing so many problems at school.

My children are very special to me. My son has a unique take on life. But even though he is cognitively able, his disability is still hugely challenging for our family, friends and his teachers. He has frequent violent ‘meltdowns’ or ‘rage cycles’ where he destroys property, hurts others and then hurts himself.

These rages are triggered by change, confusion, stressful social situations and sensory problems. It takes a huge amount of structure and planning to avoid the triggers.

I helped to launch HiP because I was fed up of seeing so many families affected by disability short changed by services supposed to help their children.

Day to day life is hard enough, but it becomes overwhelmingly hard when we are then forced to battle for our children’s right to an education, benefits, social care support and access to services. And that’s not to mention our worries about our children’s future.

Right now I am involved in a major battle over my son’s secondary education which is going to end up at a tribunal in the summer. And I am not the only one. It shouldn’t have to be this way.

Back in February 2009 I helped to carry out a consultation about short breaks with Hackney parents and carers of disabled children for Hackney Ark. The consultation put me in touch with lots of other parents in the same boat and many for whom life was much harder. It was also clear many families affected by disability in Hackney were missing out on vital support or were being offered services that were not fit for purpose. Parents’ views were generally ignored – we were invisible.

At the end of the consultation the parents involved were determined to carry on trying to make strengthen the voice of Hackney parents – especially in the local corridors of power. A year has passed since HiP was launched and we are proud of what we have achieved so far but there is still so much more to do. So please get involved and make HiP a force to be reckoned with in Hackney.