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.

Victoria's Story...

Victoria's Story...

Don’t be scared to ask for help like I was

Victoria lives near Daventry with her husband and three children, the two youngest Alex and Daniel  have both been diagnosed with Smith Lemli Opitz, a little known development disorder which means they are unable to produce cholesterol and affects many parts of their bodies. Alex attends a mainstream school.

“As well as Smith Lemli Opitz, Alex also has a curved spine. For a while this meant we had to tube feed him because his spine was crushing his internal organs. He has recently had back surgery to insert two metal rods and will need surgery every six months until he is 15 to replace them.

“I knew something was wrong the day Daniel was born. He had very similar symptoms to Alex; he wasn’t feeding, was being sick, and losing weight. We pushed the doctors for a blood test, after which it was confirmed he had Smith Lemli Opitz too. He also has a heart condition, has had three operations and then open heart surgery when he was two years old - he needs to go to hospital a lot for monitoring.

Victoria's Story..

Being the parent of disabled children has its upsides and downsides.

“It is exhausting, not just physically but mentally,” says Victoria. “Both boys are still in nappies and require my full attention 24/7. We have daily physiotherapy and exercises which takes up a lot of time. I can’t work because it would cost so much in child care. With the amount of time I would need off to deal with sickness and hospital appointments I’m not sure anyone would employ me at the moment.

“The hardest thing is seeing how it affects my daughter. She is only 7 years old but sometimes we forget and expect so much more of her. She doesn’t get as much time on her own with us as the boys do, however she takes it all in her stride and I couldn’t be prouder.”

Even with the pressures felt by Victoria and her family, she doesn’t find anything more rewarding than seeing all her children reaching key milestones and for Alex and Daniel this is even more special.

“Every goal they reach is a huge deal and makes you really proud as a parent. Last year, Alex played Joseph in his Christmas nativity and we were all in floods of tears. To see him playing such a major role and being treated the same as every other child in his mainstream school is just wonderful.”

Victoria has found some services really supportive and urges other parents to seek out the help they need.

Victoria'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.

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

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