Introduction and Family Background
We are a family of 3 (husband, wife and our gorgeous daughter Jessica). We live in St Helens, Merseyside in a private house. Before Jessica’s arrival we both worked full time, my husband is a consultant engineer and I was a civil servant.
During birth Jessica sustained a significant brain injury and was diagnosed as HIE (Hypoxic Ischemic Encephalopathy) grade 3. She suffered a seizure 20 mins after birth. She was transferred to the Womens Hospital in Liverpool and was cooled for 72 hours.
Jessica has now been diagnosed with severe quadriplegic cerebral palsy, epilepsy and reflux disease.
We have been supported by St Helens Portage service from October 2011 (when Jessica was 3 weeks old) until February 2017 (when Jessica started school). We had weekly visits from Portage, initially Janet Buckley then Emma Flynn.
When Portage first became involved with Jessica she was a tiny ball of fury. At 5 months old she was diagnosed with a cows milks allergy and reflux disease. But she was still in significant pain. Jessica and I also had separation issues as I had recently been diagnosed with PTSD. Portage helped with teaching Jessica to calm and playing with toys to encourage her to fix, follow and to reach for toys. Jessica was very late in developing any head control and trunk strength so portage also concentrated on playing with toys to encourage this development.
We were referred the Portage service before Jessica even arrived home from the hospital at 3 weeks old. Portage Home Visitor, Emma Flynn initially visited with our early interventions officer from our local Sure Start Centre.
The Portage Journey
Portage taught me how to play and to interact with Jessica, to stimulate her and how to deal with the challenges we faced as a family.
I initially resented the home visits but this was more my state of mind than due to Portage. I felt like I wasn’t good enough to be her Mum. I felt like I was under surveillance, how wrong I was. Portage was a vital life line for our family. They provided me with so many ideas about how to adjust “playtime” for Jessica’s needs. They also helped me deal with the new life we had found ourselves in. The weekly visits became something to look forward to, the new toys, seeing Jessica’s face light up when they arrived with something new, something she loved.
The way they recorded Jessica’s development was easy to understand and the short and long term goals where reasonable.
Over time Jessica also began to love Portage visits, she began to settle with Emma and even enjoy a cuddle at the end of session if she had worked hard. Jessica also developed a cheeky side to her personality when working with Portage. She would purposely not do what was asked of her and she would laugh when she knew she was being cheeky. Just like a ‘regular’ child.
I was very isolated in the early days of being a special needs Mum. I was unwilling to leave the house, I refused to attend any mother and baby groups, even ones for SEND children and their mums. I didn’t think anyone could feel like I did and no one would ever understand me. Again I was wrong. Eventually I agreed to go on a Portage outing to a local sensory play centre. I didn’t want to go on the coach so I drove us there myself taking my Mum with me for support. I can truly say that it was that day when my life finally took a turn for the better. I met two mums, our children had completely different stories to tell but I then realised that there were other ‘broken’ parents and solid friendships can be made and we could build ourselves up together. These two mums are now my closest and dearest friends. We have been through happy times and the most horrific times when one of their wonderful children passed away but we have always had each other and I know we always will.
After this day out I joined the group Emma had been trying to get me to join for 18 months and went to the Bridge Centre in St Helens weekly with my friends and their babies.
With Portage helping me and my daughter in this way it changed our entire family. I was able to start to go out, sometimes without my Mum and my husband, who obviously worried a lot about me and now could worry a little less. There was less pressure at home, and therefore at work he was also less stressed.
Portage worked for us as we had someone to hold our hand, someone who would talk us through a tough medical appointment, rationalising it. Emma was someone who could help me find vital information when I had no idea where to turn to and to chase information if it was delayed. You can’t put a price on how important this is.
We had numerous other professionals involved in Jessica’s care. Initially this was mainly physio and joint visits would be arranged every month or so. This enabled everyone to know what was being concentrated on and how Jessica could benefit. Having Portage with me for such appointments helped me too, as Jessica was rather reluctant to work with physio. Portage also completed the referrals for SALT, OT and the visual impairment team and again joint visits were arranged.
Having Portage by my side for such appointments not only gave me strength but apart from family, my Portage Worker knew Jessica better than anyone else. When I was slightly resistant to situations my Portage Worker could essentially put my views across when I was perhaps not feeling very eloquent.
The main outcomes achieved for Jessica were head control, brain and sight development along with developing vital sensory stimulus. She also learnt how to settle with people who weren’t direct family and she learnt right from wrong when she was being a monkey.
Without the support of my Portage Worker I certainly would never have sent Jessica to preschool and wouldn’t have known how to get her into mainstream school. Emma was also a vital link in helping the school to adapt to having a child like Jessica in attendance and the transition was smooth because we all had the Portage service to help us through.
The benefits of having Portage in our lives is too great to quantify. It has been a vital service to our daughter and our family as a whole.
Our future plans are to encourage Jessica’s development and help her school as much as we can to enable her education to blossom.
All of the Portage principles are more then met in our opinion.
Portage has left a huge hole in our lives as a family but a family is exactly what we have been left with. Before the Portage service we were lost, broken and alone, we have now learnt how to cope in this world we have found ourselves in and we are eternally grateful.