Family Stories and Case Studies

Family Stories and Case Studies

Being the parent or carer of a disabled child can be rewarding, challenging, exhausting, difficult, overwhelming, complicated all in one day. Here some parents - Sonia, Christine, Victoria, Carol and Linda - tell us how things are for them and their families.

We also hear from Taylor who is 14 and has cerebral palsy quadriplegia about the challenges of getting out and about and finding places to socialise.

Christine's Story...

Christine's Story...

Being involved in parent participation forums makes me fell more confident that parents' views are listened to

Christine is from Long Buckby and is married to Ian. They have two children, Ella May who is 19 and studying architectural landscape design at Sheffield University and Janie Lee who is 16 and attends Greenfields School & sports college.

When Ella was 3, Christine and Ian decided to have another child. During the pregnancy, Christine was offered the triple test and the results came back as a low risk of Downs Syndrome.

Janie was born in August 1994 after a long labour, but a natural delivery. A couple of hours after Janie’s birth, Christine had an instinct that there may be a complication with Janie. "The staff who previous to Janie being born had been jolly and up beat became subdued and avoided eye contact with me. I was aware that Janie was 'floppy' and there was a slant to her eyes. I asked one of the midwives who had been very supportive during labour if it was Downs Syndrome? To this day i still remember her as she gave me a hug and told me i had a beautiful baby. " Official tests soon followed and two weeks after Janie was born, a consultant telephoned Christine and Ian with the news that Janie did have Downs Syndrome.

The first two years of Janie’s life were very difficult for the family. Christine explains, “Janie’s first birthday came and went in a blur, she had so many health issues, breathing problems, fits and hearing complications that we felt we had lost our little girl."  After intervention from an understanding consultant, Janie was prescribed medication that controlled the fits and her health improved. Ian and Christine describe that period as Janie 'getting her smile back'.

From the age of 3, Janie attended main stream nursery and reception at a school in Daventry, but after discussion with the school it was decided that Janie would benefit from attending Billing brook school in Northampton. Janie was very happy at school and with the support of NPPS (Northamptonshire Parent Partnership Service) Janie transferred to Greenfields School to continue her education. Janie goes to school in a taxi. She enjoys swimming and “pub club” which is a social event for Post 16 students at the school. Janie attends “Dig it”  a Youth group in Daventry run through Northamptonshire County Council. Christine says, "This is the highlight of Janie’s week. She comes home beaming.”

Christine's Story..

Through Christine’s involvement in the AHDC (Aiming High for Disabled Children) parent forums, she has began to realise the extent of some of the services for children and young people now being provided. Janie has attended the independence group since February and although Christine and Ian are apprehensive, they want Janie to learn new  skills and develop some independence.

"I want to continue to be involved in parent participation as I want to ensure that the work that has been done to make sure parental views  are listened to and acted upon continues, that services that have been improved and transformed continue to be provided and I am aware of the information and support available to us as a family in the future,” says Christine.

Christine is actively involved in Diversity Fitness 4 life and wants to promote the importance of Young people with additional needs having the same opportunities and experiences as all young people, “My wish for the future for all young people including my daughter, is that respect and quality of life is the central thought when services are implemented or removed”.

Christine's Story.. Northants Parent Forum Group Family Stories and Case Studies

Sonia's Story...

Sonia's Story...

I got involved because I wanted to 'shake up' services ..Read Sonia's Story here

Christine's Story...

Christine's Story...

Being involved in parent participation forums makes me fell more confident that parents' views are listened to ..Read Christine's Story here

Victoria's Story...

Victoria's Story...

Don’t be scared to ask for help like I was ..Read Victoria's Story here

Tom's Story...

Tom's Story...

Some people just seem to know! ..Read Tom's Story here

Carol's Story

Carol's Story

Find out all you can, talk to other parents ..Read Carol's Story here

Sheila's Story...

Sheila's Story...

We remain positive and hopeful. Perhaps someday soon there will be more support ..Read Sheila's Story here

Olivia's Story...

Olivia's Story...

I am just a parent like you ..Read Olivia's Story here

Family Stories and Case Studies

Achieving Positive Change through Effective Participation and Collaboration

If you would like to tell your family story here or would be happy for your story to be used please contact us.

Christine's Story.. Northants Parent Forum Group Family Stories and Case Studies

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