Jacob's stroke was a perinatal stroke, which means he had his stroke before he was even born.
Initially, after his very difficult birth, Jacob seemed fine. But the next day he stopped breathing twice and was rushed away. I didn’t see Jacob again for several hours. I felt terrified to hear he was having seizures, initially thought to be caused by an infection, now we know they were caused by his stroke.
When we were told Jacob had a stroke, we had to face all the possible outcomes, including the dreadful fear he mightn’t ever be able to walk or talk. The medical staff stressed that Jacob was at an age where the brain can rapidly repair itself and that his outcome could be much better. Although the words were going in, I felt like I was watching from outside my body and didn’t fully understand what was to come.
A lot of times, especially through Jacob's baby stages, I felt like an ‘outcast parent’. It was hard to be part of community baby groups, seeing babies more advanced than Jacob. A lot of times, despite parents knowing Jacob’s situation, it still felt like they judged his delays.
Over time perspective shifts. At the start I felt lost and confused, I felt like life was cutthroat; time was sealed and his whole life was determined by the stroke. But that isn't true. Life has had so many twists and turns and it's so important to hold on to hope and hold on to the thought, ‘life will be how it exactly meant to be’.
Eventually Jacob progressed. He walks, but it came slowly and was not without its hurdles. Jacob is still at an age where he doesn’t fully understand what has happened to him. He understands his brain is ‘poorly’ and we must work with him to make it better. He is always eager to try, and we could not be prouder of him for that.
Jacob is now nine years old. Oh, what a nine-year-old he is! Jacob is so funny and so loving, he truly can, and does, bring light to any room. I can’t believe that before we know it, he will be hitting the teenage stages.
We go through periods of progress and others of stagnation. This can sometimes feel daunting, but we just keep going. It's important to look at where you started and see where you are now, there is no such thing as a small amount of progress, all progress is a huge step forward.
My top tips when planning for school. Consider
- Where is your child, 'mainstream' or 'specialist provision'. If mainstream, consider do they have the means to help your child. For Jacob, small group teaching was really helpful.
- Begin finding out about Education, Health and Care Plans, as if your child needs one it takes a long time.
- Talk to your school, help them understand what works best for your child. Remember you know your child best
- Allow yourself an adjustment period. Starting school is a big change, both for your child and for you.
None of us would change Jacob for the world but of course, we have daily challenges, especially with behavior. Starting school was difficult, although we had amazing support going from nursery to reception. Jacob has been held behind twice, so his physical age does not match his school year group. We are lucky that Jacob has the benefit of a small class within his mainstream school, where he spends time having his needs met along with other children who have additional needs.
Although Jacob very well could end up needing care for life and he may never live independently I feel more hopeful for all of the journey ahead.
Remember, where you are with YOUR child is exactly where your child needs to be at this time. People don’t mean to be judgmental. Hold your head high in remembering that you are doing the best by your child.
Another important thing to remember is YOU, when it comes to a child recovering from stroke. Make time for yourself in a way that works for you e.g. an extra-long shower, returning to hobbies, some child free time, if it’s possible. Looking after yourself is extremely important.
It’s so important after finding out your child had a stroke to find people who will support you. It’s not a journey you can face alone. It can take you to breaking point and having love and support around you is very important. Please find someone to listen to you, as you need them in your times of doubt and anxiety.
Even if you find support from others who have gone through a similar journey, you may always feel like you're not doing enough. If it’s possible, I suggest ‘therapy’. It can be very beneficial to open up to someone whose job it is to help you. It took me a long time to do this and when I did it made the world of difference.
My advice to you
- your journey is your journey, no two are the same
- although hope is so important in this journey, being realistic is also important. Consider setting realistic expectations for yourself and your child.
- Remind yourself that where you are now may not be where you are in a year or two.
- Take it as it comes!
Please also remember a lot of people may truly not understand what it’s like. A parent who understands is fundamental to your own well-being. I love that the Stroke Association are offering a Helpline and Parent-to-Parent support. It is so refreshing to see people may struggle less to find someone who they can relate to too; someone who has been where they are now, someone who can be an offer of hope.