My journey with Childhood Stroke and being a Parent-To-Parent Volunteer in the Stroke Association
My Son Austin suffered a stroke when he was 12 minutes old,
so the beginning to family life was a million miles away from the baby bubble we were expecting.
Austin was transferred by the specialists to another hospital almost two hours away and with this journey time a lot of set up was required before making the journey. Unfortunately, I couldn’t go with Austin as I wasn’t able to leave hospital. So, his dad made the journey with him. Austin went to this hospital as it’s one of only three in the region that can offer therapeutic cooling. The purpose of therapeutic cooling is to help minimise the damage to the brain.
We spent two weeks in the NICU before being discharged home. We were happy to get home and start being parents, however I was scared to leave the safety of the hospital behind.
I now know I went through a grieving process; grieving for the experience I thought we were going to have and had been focussed on for 9 months. I was so happy he was with us, and we were home, but I still had down days. I cried a lot, feeling so frustrated. My role of parent was, to a large extent, taken away in those first few weeks. I couldn’t feed, dress or cuddle him, so I needed to take back some control. One of the things that really helped me through was researching and finding all the different therapies and activities I could do that would help Austin in future.
Austin is now five years old and amazes me every day with his determination and sense of courage. He loves exploring outside in all weathers, dancing with his sister and helping with jobs in the house.
Early on we engaged a private OT for Austin, and he still works with him weekly, in school. We found our OT a great support. We also had several bimanual therapy courses (blocks) with the Evelina hospital, in London, which were fantastic. The OTs used the term ‘helping’ hand for Austin’s affected side. This means he understands that one hand can hold things and help the other hand complete other tasks, such as fine motor skills or undoing container lids. This really good ‘helping’ hand on his affected side is significantly stronger due to all the therapy exercises we did with him and OT.
Austin started nursery when he was two years old. It took a while to find the right place but when we did, they were wonderful. He came on in leaps and bounds when attending three times a week. There were times when we or nursery staff didn’t understand what he was communicating, leading to outbursts of frustration from Austin. Over time his communication has improved and its less of an issue
As he grows and develops there are always challenges and just like other parents, whether the challenges are with behaviour, sleep or sensory issues we are always adapting and learning new ways to help him achieve his potential.
My connection with the Stroke Association and Parent-To-Parent Volunteer Calls
I was lucky to have the support of our family, yet it was still a very isolating time. I didn’t know anyone with a baby with additional needs and I’d never heard of a baby having a stroke. I would have liked to have spoken with a fellow parent who had shared a similar experience. I believe I would have found it comforting and reassuring.
Thus, when I heard about the new Parent-To-Parent support service I knew I wanted to be a part of it. I have previously been involved with the Stroke Association, taking part in a reference group.
I completed several virtual training sessions with the other volunteers, and I really enjoyed the sessions meeting other people with similar experiences. Now I volunteer on the Parent-To-Parent support service.
Whether people wish to vent, question or share, Parent-To-Parent Volunteers are there to help. We can also signpost to further information, for example, social media groups and websites.
I can be a holding hand when people need it and can offer some hope in a scary time. No parent should feel alone on this journey and parents like us are here to help you to not feel alone.
