Edward was born in 2005 and got into distress during the labour. He had a decelerating heart rate that didn’t recover. We ended up with an emergency forceps delivery and I knew instinctively that something was wrong.
Edward wasn’t breathing. He was taken to Neo-natal Intensive Care, where he was ventilated. It was the worst moment of my life. After 35 minutes, he decided to breathe by himself. Within the first 24 hours he suffered from abnormal movements or fits, so he was heavily sedated. We then spent the next 12 days with him in intensive care and another four in the special care baby unit before he was finally discharged and we could bring our gorgeous baby home.
When Edward was 16 months old, he was finally diagnosed with Spastic Quadriplegia Cerebral Palsy. Although in our heart of hearts we knew the consultant was going to tell us this, it still came as a shock. After hearing the news I hit Google and found Brainwave.
Edward’s Cerebral Palsy severely affects his mobility. He can’t walk unaided and, until recently, he was still in nappies. His fine motor skills are considerably delayed and awkward and his speech has also been delayed. He only started speaking in four or five word sentences about two years ago.
When we began our journey with the Brainwave we didn’t know how it would help Edward, but the team were so positive that he would be able to achieve more independence that we felt really encouraged. Our first goal was to get him to crawl with a reciprocal movement instead of ‘bunny hopping’. He achieved this in the first six months. When we returned for our first review, they couldn’t believe his progress. Every time we go back for a Reassessment they are astounded at how well he has improved, and I know that if it wasn’t for Brainwave he wouldn’t be achieving the milestones that he is.
Since then, our objectives have been to improve his speech and his core stability, with our ultimate goal being to get him to walk unaided. This may never happen but with the Brainwave Programme, anything is possible. We never thought we would hear Edward speak so even though he turns six in March, you never know what is around the corner.
Brainwave’s staff are amazing. They gave us new hope that we would be able to do something productive for our child. Their ethos of ‘the parent knows the child best’ is refreshing and they give you the tools that you need to help your child progress to their full potential. They provide the exercise Programme and they show us how to do the exercises. Then we have the hardest task of all – convincing a five year old that he needs to do them! But they are there to support you every step of the way. Any problems, they are at the end of the phone. I couldn’t imagine life without them.
It is hard work for all of the family but it continues to be worth it. Being able to help our son progress and become more independent has been very empowering and every time we visit the Centre, we come away feeling more positive.
These were the two things that really struck me when we left after our first Assessment: we were now able to help our son and we had been given the tools to do it. Until then, I had felt completely helpless.
Brainwave are our saviours.