I received a gift a few weekends ago from a visiting family member. A beautiful bunch of rainbow tulips. It was a lovely surprise and a simple act of kindness that brought much pleasure for the week after their arrival. I had forgotten how much I really love tulips and how lovely it is to have some of outdoors indoors…
When I found out I was having a baby in 2010, I was concerned about how the future would be with a child; maybe some of that was to do with the surprise of finding out I was unexpectedly pregnant. I think that all first time parents have some fears about having a child, whether it is surrounding the birth, the sleepless nights, their own ability to manage as a parent or what lies ahead on such a life changing journey. All questions of course that you can’t know the answers to until you experience it, and completely natural questions in embarking on a new learning experience.
However a few short weeks after my initial surprise, the goal posts were changed as I discovered that I was expecting a child with Down Syndrome. I didn’t really understand the implications of this news having no real contact with anyone with Down Syndrome. I was quite shocked, to say the least, but as a person who likes to be prepared, I decided to try and arm myself with the facts and read as much as I could in an attempt to regain control of what felt very much beyond my control. Of course it’s a tricky balancing act between finding out facts and scaring yourself silly.
I had many questions about living with a child with Down Syndrome, such as whether we would we be able to do typical things with our first child? Would he be able to walk and talk? Would he go to mainstream school? Knowing Jake was going to have Down Syndrome added a further layer of complexity to the general parenting concerns with no answers at that point. Those people who know me well understand that patience isn’t my greatest strength!
I clearly remember a discussion with my antenatal mum friends a couple of weeks before my due date when we met for lunch (ah those were the days!) and I talked about how I needed to reset my expectations for the future, and that my baby wasn’t likely to be able to go to University as both his parents had. One of my friends stopped me in my tracks and said “Why would you say that? You don’t know what the future holds!”. And she was right. It was a slap in the face. Why would I limit my child? I think I had become so caught up in the diagnosis of Down Syndrome and not yet met my beautiful little boy, that I was trying to understand what expectations to have. The lesson swiftly kicked me back into the right lane and the world is Jake’s oyster. It is not for me to define his future based on my or anyone else’s expectations. Looking back after 5 years, and being a few years further along the parenting path, I have learnt important lessons which include, taking one step at a time and not to focus too much about the future – the worry as a parent never goes away, but you must embrace and enjoy the time you have as it passes so very quickly!
One of the big milestones I did set my sights on was for Jake to attend nursery and me to return to work full time, with the eventual goal of him attending a mainstream primary school should he be able to. We have had many challenges in his short life with major open heart surgery at 5 months old, subsequent oxygen requirement until he was 2 and a half and not being able to walk until turned 3. These factors did impact on his ability to play alongside and integrate with his peers in nursery. His nursery class were a fantastic group of children and we have made many friends (both children and parents) since Jake and his younger brother have attended. Jake was accepted and loved as one of the gang. They also helped him when he needed it. When Jake was in the 1-2 years room, he wasn’t yet crawling and attached to an oxygen cylinder, his friends used to get books and toys for him as he wasn’t able to reach them. These were little toddlers who were only just able to walk themselves and yet they understood, accepted and supported Jake when he needed it.
Jake graduated nursery with his class mates last summer and is now attending one of our local (mainstream) primary schools. In reaching that point, there were many sleepless nights about whether we were making the right decision? Would he be able to cope? Would he be happy? I am delighted with how he has settled in and at half way through his first year, we can see him coming on in leaps and bounds as he is learning to read and is settled into school life. He seems to be a popular boy who is regularly greeted by older children in the playground! He has been invited on play dates and we have had invitations to 7 [seven] parties for his class mates since December. It feels like a different party each weekend but I am very pleased that he seems to be accepted as part of the class.
One invitation particularly touched me. A couple of weekends ago, Jake attended a party for a little boy who we hadn’t heard of. I assumed that this child was a classmate who we hadn’t yet met. It turned out that this wasn’t a child from Jake’s class. It was a friend from the playground who was in another class, who had invited Jake to his birthday party! A small part of me always wonders whether Jake has been invited as the whole class has an invitation. This has not been the case other than one or two occasions. But here was Jake, being invited to a party where that was not even a factor. What an amazing thing! I was so touched that Jake had made friends enough to be invited. Especially in light of the fact that the school has 4 classes in Reception, so almost 120 children in Jake’s year alone!
When I was a child, people with disabilities didn’t attend mainstream schools, they went to special schools. Things have changed 30 years later, children of many abilities attend mainstream schools and I hope it adds a richness to that environment that would otherwise be missed.
I hope that Jake brings a different view on life to those people he encounters and that he continues to push boundaries, challenge preconceptions and outdated ideas of what living with Down Syndrome looks like today. Jake seems to have a positive impact on everyone he meets which continually surprises and delights me. He is a fully integrated and included member of his class in school, even after a short time, and I hope that he continues to bring rainbow colours to those he meets in his future, whatever path he chooses for his life. After all, the world is his oyster!
I was reflecting this morning on what it was that made the tulips so beautiful? I think it was the fact that they were Rainbow Tulips and contained a combination of different colours. This set them apart from those tulips which are all one colour and alike. The diversity of colours combined really brought them to life…
Tara is mum to Jake and Joe and has recently started her own blog here
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