• Our mission is to make families with disabled children feel valued and experience the best quality of life possible
    Friends and Families of Special Children - Mobile Slide One

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Diagnosis

Diagnosis

Getting a diagnosis can be a long and difficult process, and sometimes children won’t receive a diagnosis. Genetic Alliance UK estimates that about 50 per cent of children with a learning disability have no definitive diagnosis and there are also some children with a disability that no one can explain the cause of. Without a diagnosis your child will still be entitled to support to meet their individual needs regardless of whether they have a diagnosis.

The National Charity Contact provide information on many medical conditions. To find out further information about a medical condition or disability please visit here

WHY IS IT SOMETIMES HARD TO GET A DIAGNOSIS?

There are a number of reasons why getting a diagnosis can be difficult:

  • There are more than 6,000 known rare conditions – doctors rarely see children with these conditions, making it harder to recognise them when they do.
  • Different conditions can have similar features or symptoms.
  • Some children have a number of features or symptoms that do not fit into one specific condition.
  • There are significant variations in the way that a condition can affect different children.
  • Certain things that indicate a condition may not appear until your child is older – this may result in a late diagnosis or even a change in diagnosis.

Because of improvements in science and medicine, there may be a belief that doctors can always find out why something has happened to your child. Sometimes this isn’t the case and this can be disappointing.

Further Information

Living without a diagnosis

Living with a rare condition

All About Diagnosis

What our friends and families say...

Thank you, as always, for a fantastic event. Daisy had a great time x

Andy Smith”

24.02.20

Morgan had a fantastic time this is her 2nd time of joining fun and freedom activities and is enjoying it very much and looks forward to the next so thank you 

Charlie Harris”

24.02.20

These guys are absolutely amazing! If you are a family with a SEN child this charity is great to connect with. There is activities provided for different groups; children with additional needs, children with severe additional needs, siblings of Sen children and family activities. Plus they are an important hub of any information you may need. Oscar is part of their ‘adventure club’ and this gives him bags of opportunities to access so many different things – pizza making at Prezzo, archery, day trips out, access to a hydro pool. Just to name a very small amount. No judging, full support and a chance to connect to other families just like ours 

Jolene Cumes”

24.02.20

Lovely activities for both the children with send and the rest of the families. The workers really understand the situation and are very supportive. We have used the lending library and family support services. Thank you for allowing my youngest to have a break from being a carer 

Chloe Botterill”

20/02/20

Attended a session about sensory processing, was very well presented. Loved the idea of practical experiments putting yourself into a child with processing disorders shoes to see the world from their point of view. Really helpful information.

Donna Potter (parent) Jan 2020

I would highly recommend friends and family of special children. I think all the staff are fantastic, very friendly, helpful and do an amazing job. as a family with 3 sen children you guys are a god send with the activities and workshops you put on for families and the children. We really love the lending library and wish we had found you guys years ago. It would have saved us loads money lol. Thank you and keep up all the good hard work. You help us so much as a family 😍 x

Helen Blaco October 2019

“The emotional support I received from my befriender was fantastic and the opportunity to off load and reveal my concerns and fears was like having a huge weight lifted off my shoulders.”

Gareth Allen (parent)

Absolutely amazing charity that offer amazing support to the whole family and lovely breaks for the siblings. My daughter has benefited from days out with the fun and freedom club and adores Brett as he always makes her smile and feel comfortable. My son has autism and ADHD so sometimes life can be a little stressful for her so a days break away to enjoy herself with other children who experience similar things is amazing. It gives her a chance to play and be herself. The family events are always so fantastic as well and so are the events for the disabled child. Friends and family really are such an amazing charity that really cares. Thank you for all your hard work and dedication.

Jodie Jones (parent) June 2018

“Not only does the charity provide exciting experiences for the children but can also help with much needed support for the parents.  Being a parent of a disabled child can at times be very lonely and isolating.  To meet with other parents on these activity days is a breath of fresh air and helps you to realise that there are many other people like you facing the similar day to day challenges of having a disabled child.  From our personal experiences we can share stories, offer help and advice and even make new friends.”

January 2018

“Thank you to all staff for looking after our kids at Magdalen Farm. Oliver has really enjoyed himself and can’t wait till the next time.”

August 2017

“What a fantastic friendly welcoming place. We visited for the first time this morning for help to fill in a DLA form for our eldest daughter. We were given great help and advice with something we found very overwhelming and difficult.”

February 2017

“It was the best day ever being able to go swimming as a family with her little sister who can only use a hydrotherapy pool. We’re so grateful we can have unforgettable days out thanks to the events you put on. We can thank you enough.”

May 2016

“Thank you, yet again, to Friends & Families of Special Children for providing opportunities for my son that I never thought he would be able to do.  During the summer he was able to have surfing lessons and enjoy other water sport activities organised by the charity.   When we arrive at the sessions they are always very well planned and as parents we have no explaining to do and even better no apologising for our child’s behaviour!  The staff have an amazing understanding and empathy on the needs of various disabilities of the children and this helps to keep everyone relaxed and happy including the parents/carers!”

October 2015

Activity Calendar

Please note our activities can be browsed by date using the interactive calendar below. A light green square indicates there are events scheduled on that day. Simply hover over the square and the number of events on that day will appear. Click on view events and a list of the events will be shown above. You can then click-through to go to the specific event page for more details and to book.

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