This Carers’ Week we celebrate the impact carers make on our communities. In Clackmannanshire Lorraine has spent 10 years fighting for a “normal” education for her disabled daughter Emma (13). Her determination has paved the way for others to access appropriate primary and secondary education.

“Anything that people do is normal, but for someone with a disability to do that same thing they have to fight and fight and fight. I’m not asking for the moon, but as a carer I’ve had to become a fighter,” says Lorraine.

Emma, who she describes as being “very funny, witty, a huge personality – firey too” was born premature and was only one week old when she contracted septicemia, which left her with a range of conditions, including blindness. 

When Emma was three Lorraine faced her first real challenge…there were no nurseries in her area able to cope with Emma’s needs. Thankfully, the head teacher of Lochies Primary helped Lorraine take up the cause and together they pushed to get Lochies School opened up to special needs. 

Life changed dramatically for the family four years ago when Emma choked and was found unresponsive. After being rushed to the Royal Hospital for Children in Glasgow she lay in intensive care, her life hanging in the balance.  

Says Lorraine: “Her lungs were disintegrating, she had tubes coming out of everywhere, her arterial line clotted and she had to have her leg amputated. She had a tracheostomy and lost her hair with all the stress.” 

In hospital, unable to speak because of the tracheostomy, Lorraine and Emma worked out the most simple signing method they could. A tap on the hand for “yes” a shrug of the shoulder – the only part of her body not plugged in to something – for “no.”

“She had her 10^th birthday in the ICU. Horrible. Awful. She had just regressed into herself and started on anti-depressants. That’s when I started looking for answers – what could be done to light Emma’s spark again?,” she explains. 

“I got in touch with Sense Scotland and Susanne from the Family Advisory Service came to the hospital and did sensory stories with Emma. This gave me a break, and gave Emma someone else to be with. Things began to turn at that point.” 

Nine months after being admitted Emma was allowed home, but this was just the beginning of yet another battle. The local council wanted to send the primary six pupil early to the local high School – because her chair was too big to get through the doors in her school. 

The fight that ensued had a happy ending though… 

“The result was that she went to a new school, Castleview, for primary seven and they were just great with her. They have done more than I could ever have dreamed. In the time she’s been there she’s now off anti-depressants and full of fun and happy again. 

“When she started there I wished for a happy, contented and healthy child but they have given me so much more.” 

Asked how being a carer has changed her Lorraine answers: “Before I would’ve been a people pleaser, anything to keep people happy. But not now.” 

What has her experience taught her? 

“It’s the environment that people are in day to day that makes the difference. Emma is great fun to be with and she’s got her spark back because the school and the team that support the family ‘get her’.

“I have our little girl back who we thought was lost for ever back in 2017.” 

If you are a carer or family member needing help or advice for a disabled individual please email our Family Advisory Service or call 0300 330 992.