Aslam and Sadia live in London with their four daughters. They struggled to get the support they needed for their daughter Kinza after she was diagnosed with cerebral palsy. She went through many health problems and it was a very stressful time for the family. Aslam and Sadia turned to Scope for support and it turned things around, making them feel less isolated and stronger as a family. In this film and blog, they talk about why support is essential for disabled children to get the best start in life.
As my daughter, Kinza, was growing, we saw that she was not developing like other children. When she was six months old, we took her to a specialist. They told us that some children have a tendency to develop later and to wait until she was 9 months old. We waited but she was still the same so the specialist referred her for some tests and we found out that she had cerebral palsy.
Dealing with the diagnosis
The diagnosis made us feel very depressed. Kinza was our first daughter and we had plans in our mind about what it would be like. We took her to many places and specialists to get their advice. What were the options? Is there anything we can do for her? So many questions. Nobody could make any guarantees. We just had to wait and see. My wife was worried and she still asks me sometimes “What is going to happen?”
As she was getting older, we were finding it difficult to handle. We asked for advice about what you can do for this type of condition. They all spoke about physical things, but no-one talked about her mental development.
As life went on, Kinza started having a lot of health problems. It was a very difficult time for us. We didn’t know what was going to happen next. So many things were going through our mind and we were really upset.
We got in touch with Scope because I was struggling
We were given a number for Scope and a few other organisations. We called everyone. We couldn’t find help from those organisations but we found help from Scope. It was a great experience. We discussed our problems and got some advice and we started to feel better. Before that, we were alone and nobody was helping.
Without Scope’s support, we don’t know what we would have done. We’d be struggling more and maybe getting worse. The emotional support that they have given us has been fantastic. We’re feeling much better compared to previous days and we have a lot more strength now.
Without Scope, we wouldn’t have achieved everything so far for Kinza, which is a lot. She’s in less pain now, she’s concentrating, she makes noises to communicate. She feels happy, she laughs.
The future is looking bright
Hopefully, we will reach that point where Kinza will be totally independent. At this point, Kinza will be happy and we will be happy. After coming out of these difficult times, we have a feeling that our future, especially for our kids is bright, they will get good education and succeed in life.
The most important thing is that you never lose hope. If you have hope, then you can achieve everything. Don’t be isolated and try and find the support you need.
At Scope, we work to change society so that disabled people have the same opportunities as everyone else. There are 13 million disabled people in the UK today and life is still too hard for too many.
Our new strategy has been developed with disabled people and their families and sets out how we want to make this country a better place and drive positive, lasting change.
We’ll support parents of disabled children get the support they need, so that all children can succeed at school and get the education they want. We’ll work to make sure that disabled young people are supported as they move in to adult life, whatever they want to do.