Thousands of young children are diagnosed with cerebral palsy every year. At the point of receiving this diagnosis, some parents have never even heard of cerebral palsy before, or their knowledge of the condition is very limited. They can feel very alone and isolated and unsure what to do next. If they make contact with a charity or organisation they will often be given information about support groups. These support groups are very important to parents after first receiving a diagnosis as they can receive practical advice and emotional support from other parents who have been through the same thing and have already experienced the early struggles associated with bringing up a child with cerebral palsy. This is invaluable as the parents will develop a network of support and will, most importantly, will not feel alone.
I have the benefit of working closely with a number of families affected by cerebral palsy, as part of my day job and as part of my volunteering role for a local cerebral palsy charity. I have noticed that when parents first receive the diagnosis they have many questions and need help and advice regarding a number of different issues. Parent led support groups are a great way for them to have access to a number of people in similar situations that can provide useful tips and first hand advice.
It can be the case that parents lives will have been turned upside down by their child’s condition, the life they had before will have dramatically changed, career plans put on hold and a significant amount of time being spent at home caring for a child with additional needs. They have to adapt to their new role and this can be hard. However, meeting other people who are going through the same can help the process.
The charity I volunteer for is run by dedicated trustees, all of whom either have cerebral palsy themselves, or a member of their family does. Therefore the first point of contact that anyone has with the charity is with someone who has direct experience of the hurdles that families affected by this condition face. This gives an immediate level of support which is then reinforced with the option to attend support groups, if appropriate, depending on the geographic location of the families. The prospect of attending a support group can be daunting in itself but many parents feel reassured as soon as they have attended the first one as, ultimately, everyone is there to help support each other.
Although there is no cure for cerebral palsy there are a lot of different types of treatments and therapies that are aimed at improving various symptoms associated with the condition. Many parents often want to try anything they can to try and enable their child to reach their full potential, support groups are a great way to not only find out about different types of therapies so that the parents can then discuss these with their doctors, but also to receive direct feedback about how these can help. Also, if a child is unable to communicate, other experienced parents often have very useful tips they can offer about different ways of communication or sensory activities that can be done at home to try and offer their child stimulation. This can help restore realistic optimism for some parents that, although their child has this condition, there may be certain parts of their disability that they can work on improving or certain ways they can try and improve interaction with them.
There is an overlap with support groups and friendship groups as many parents that attend support groups then gain lifelong friendships with other families.
However, there are also a number of friendship groups up and down the country that are aimed at, not only parents of children affected by cerebral palsy, but also for those affected by cerebral palsy to attend. As we know, cerebral palsy is an umbrella term and therefore whether or not someone would benefit from attending a friendship group would depend on the severity of their condition but many people with cerebral palsy can feel isolated, especially as they transition into adulthood and finish the school/college system. They can miss out on the social interaction they once had and can become lonely. Therefore friendship groups can help with this, they can go along to a social event such as a coffee morning and meet other people like them. Again, lifelong friendships can develop as a result of this.
The charity I work with hold frequent coffee mornings, the coffee mornings are a lifeline to some people who sometimes have no other social plans during the week other than these events. Therefore, without these they would feel very lonely.
It is easy to underestimate the importance of support and friendship groups, but to someone affected by a disability such as cerebral palsy, or their families, these really can make all the difference, providing encouragement, practical help and support and reducing social isolation.