Dionne and Jayden at home

I was 21, a new mum, and terrified about the future: #100days100stories

We first shared Dionne’s story and film in August 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories project. 

Dionne was in her first year at university in London when she became pregnant with Jayden, now aged seven. He has cerebral palsy, epilepsy and global development delays and isn’t able to walk, talk or sit up.

“I had no problems during the pregnancy, the problems started during labour,” Dionne says. “Jayden stopped breathing and had to be resuscitated at birth. He had seizures when he was just a day old and ended up in the special care unit. Doctors had no idea what was wrong with him.”

“I just had to get on with it”

Dionne had planned to go back to university to finish her degree, but Jayden’s care needs and many hospital appointments ma de that impossible.

She also faced a huge struggle getting any support for Jayden. He was born in one London borough but the family lived in a different one, so neither council wanted to take responsibility – and in any case, services were overstretched. Dionne and Jayden were living alone in a mother and baby unit, with no outside support.

“For the first three years of Jayden’s life we had nothing. No equipment at home, no physiotherapy other than a sheet of paper with instructions, and no real support. Everyone was talking but most people were not doing. I had so much hope in care services but time after time I was let down.

“I was 21, terrified about the future and extremely depressed. There were days when Jayden cried endlessly and didn’t sleep at all. We were both exhausted. I was always on standby for something to go wrong with my son and I hated feeling helpless. I was very critical of myself, and so were the people around me.”

“I go back time and time again”

Dionne originally contacted the Scope Helpline for advice about physiotherapy. She was put in touch with Vasu, a Scope regional response worker, who visited her at home to discuss the kind of support she needed.

Since then, they have worked together to tackle a huge range of issues relating to Jayden’s care, health and education. Vasu wrote to social services pushing them to take notice of Dionne’s case, and this led to Jayden finally being offered a physiotherapist.

Dionne says: “Vasu has sent me so much information about sources of funding and the latest treatments for cerebral palsy. He emails me application forms and sends them in the post as well just to make sure I receive them! He rings me unprompted to give me advice and see how I am. He’s even offered to send job opportunities my way.”

RS3249_DSC_0014Vasu also introduced Dionne to a solicitor to pursue a successful negligence
case against the hospital where Jayden was born, which will be a huge help in providing for his needs in the future.

“Out of all the organisations I’ve been to, Scope’s the only one that’s stuck,” Dionne says. “It’s an organisation I go to time and time again because things actually get done.

“Jayden is so aware and so intelligent. No matter what he goes through, even a seizure, he still has a smile for me. He just needs decent support so he can gain the independence he craves. I want Jayden to enjoy being a child, without restrictions, and I want to enjoy being a mum.”

Today is Time to Talk Day, which asks everyone to take five minutes to talk about mental health.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.