My name is Rachel, I am 29 years old and I live with my husband Daniel and Son Oliver who is now age 5. Oliver suffered extensive brain damage when he was just 1 week old due to a blood clot in his brain; he was not expected to survive.
Oliver has cerebral palsy, hydrocephalus, epilepsy and severe developmental delay. Much of his early life was spent in hospital and in the care of the medical profession.
I always had myself down as a strong character, someone who could cope with anything, prior to having Oliver I had been in a management job and I felt very much ‘in control’ of my life. Aged 27 at home with a young son with disabilities and complex health issues I had become very isolated. I was struggling to form new friendships due to the constant strain of hospital appointments and Oliver strongly disliked going into any new environments.
I had missed out on all the expected groups which come with parenthood due to Oliver’s early medical difficulties and I had no confidence to attend any groups. I felt an outsider and that nobody understood the vastly different start to motherhood that I was experiencing. My husband was very supportive but was out at work full time and I had very limited family support locally so I found myself rarely leaving the house during the week through both fear of Oliver’s reactions as he was so afraid of everything and through general exhaustion of caring for a disabled child.
I felt at a very vulnerable point where my feelings could easily have spiralled out of control and was still experiencing a lot of emotions surrounding what had happened to Oliver in his early life, ‘why me’? I had a lot of time to think about things but often would not have any adult interaction for whole days at a time.
When Oliver was 3 we were assessed by Social Services Disabled Children’s Team for respite and my social worker said one of the first things she could arrange was a referral to Home-Start as she could see I was very isolated and low. I had a visit from the Home-Start Co-ordinator very soon after and I was surprised at how quickly I potentially could have somebody start as my volunteer. I was very impressed with the concept of Home-Start and could definitely see the benefits however I think at this stage I was sceptical because I wondered how well matched I would be with my volunteer or how long I would have to wait. I also felt very protective of Oliver and I was worried about trusting someone I knew very little about.
I was introduced to my volunteer, Alison shortly after my first contact with Home-start. The first visit was with my Home-Start Co-ordinator and then weekly visits commenced. Straight away I felt Alison was very easy to talk to and I was very comfortable about having her in my home. Both she and I felt that if our paths had crossed for other reasons that we would have made friends as we had a lot in common and were not short of conversation topics! Just knowing someone would be coming even once a week was something to focus on and made such a difference to be able to talk, albeit sometimes just about what had been on the TV the night before, it was an element of normality for me which I really needed. When your life is geared up around disability sometimes the last thing you want to talk about is that. Alison was the first person who had visited who wasn’t a therapist or a medical professional since Oliver had been born and one of the only people who had no agenda but to support us as a family. I could share problems and frustrations with her and she listened and offered ideas. Alison is very much on my wave length and I felt very fortunate that the process had gone so smoothly.
Oliver was very wary of strangers but took to Alison straight away and would get excited when she arrived. Alison was very tuned in to what Oliver enjoyed playing with and would sit with him and read stories and gave him lots of cuddles and affection. I often used this as a chance to get some housework done as all the time I was at home on my own with Oliver he was reliant on me being with him. We have built a very solid friendship with Alison and our families have socialised together as well as the weekly visits.
As Oliver has just turned 5 Home-Start are no longer involved in providing support to us as a family and Oliver will be starting school very soon. Although I am still constantly facing various challenges and have to fight for what I believe is right for Oliver I am in a much more stable place emotionally and feel I can face things head on. I am so very grateful that Home-Start was able to step in at the time they did and particularly pleased we formed such a strong bond with our volunteer Alison. The last 5 years with Oliver have been a rollercoaster ride but I am a much stronger person again for having had Home-Start and Alison support us on our journey.
Return to What Parents Say