Its been a busy year so far for us. Lots of different things going on I could update you on but as the title suggests this particular post isn't about Robyn. It's about her brother Tyler.
It has been a really busy time for Tyler. He has finished up nursery now forever, which went very well. His teachers were all impressed with his reading skills and had a lot of very sweet things to say about him at his graduation ceremony. In typical Tyler fashion he was sure to tell us about his concerns for the nursery staff and how he was sure they would be sad once he was gone. It seems to have hit him a bit more in the last few weeks though now his holidays have begun and there have been a few occasions of him asking for his nursery friends or teacher.
We have managed to keep him fairly distracted though. He is very excited about starting school in August and has been to try on and buy his school uniform and shoes now. He knows his birthday is coming up and he is very excitedly looking forward to our holiday trip to London and LEGOLAND that we have planned. He has become a bit lego obsessed since xmas so it will be fantastic for him there. His other loves right now are ghostbusters and Ninjago so making for some very exciting lego building.
While these are all great things they aren't the point of the post. Tyler has had eating issues since around 20 months of age. Now at (almost) age 5 they continue. He is now back under the care of a consultant and dietician. Both of whom have exhausted their arsenal of helplines. He has been referred to CAMHS. Unfortunately in our area has a very long wait time to be seen. Tyler had his most recent appointment with his consultant yesterday and he has decided that Tyler is on the verge of needing to be admitted to deal with these issues. We argued that we couldn't cancel LEGOLAND so he has deferred a little and we have been given a month to see if an appointment at CAHMS can be found then he will be looking to admit him to our local hospital where we spent all those lovely months with Robyn. These kids like to keep me on my toes.
Its just another thing we need to look out for with Tyler as he moves into school. We already have plans to discuss his homelife with his teacher at some point so she can get some idea of how it is for him. Not a lot of people see the knock on effect of being a young carer sibling, on his life. Having done some research into it recently though the figures for young carers falling behind at school due to their home situation are quite scary and the key in that seems to be teachers being unaware. And it seems of course like he doesn't do that much in the way of caring of course. He isn't changing nappies or bathing his sister for example but all the extra effort he puts into translating her signing for someone, being patient with her when she interferes with his toys/games, catches her when she is falling or even doesn't mind her grabbing at him all the time. All these little things add up. Tyler has developed an aversion to being touched by other children or having them in his space unless he initiates it as Robyn is always all over him, This came out in harmful ways several times at nursery.
One of the biggest thing that no one sees is the effect of Robyn's sleep patterns on Tyler. The night parties that are part of CHARGE can be disturbing to the sleep of all in the house. Most of all Tyler's. This is especially important to pass on to his teachers as its entirely unrealistic to expect he will be fully functioning and ready to learn on days when his sleep has been disturbed through the night. Understanding of his home life means he should be given a little leeway rather than being chastised over it. Other things as well may need to be considered like homework might not always be completed on time for example. If Robyn or Tyler have after school appointments at hospital that run late it may not always give us time to do things for the next days class. One of the key thins young carer groups always make clear is that carers should have a bit of leeway again on completion deadlines. Obviously this might not be a huge deal in the early days but may become more of an issue as time goes on.
So lots of scary and exciting times ahead for the young Mr. T. But to look at him playing with his Lego you would never know he had a care in the world.
Monday, 11 January 2016
I do of course recognize the big whole left in the world by Bowie passing today but this post relates to someone I will miss much more. Someone who played a major role in my life by simply being herself.
I don't tend to like new people, I am usually suspicious and wary. It tends to take a while for me to decide if I like someone, some of my best friends were people, who on first meeting I found irritating in some way.
Chris-Ann was not one of those people. I met her at a toddler playgroup I took Tyler too when he was very young. There was nothing not to like about Chris-Ann, my very first impression and memories were a mad mop of blonde curls, the biggest smile you've ever seen and the craziest socks. The socks all had individual little spaces for each toe, and they were the craziest brightest pattern I have ever seen on socks. We attended that playgroup for a lot of months and every week she would wear another pair of these individual toe space socks. It became a running interest to me to see each week what kind of socks Chris-Ann would be wearing.
During that playgroup, (the original Rhyme and Sign before it moved to DDCA), in the library, I got my first ever introduction to Makaton. It seemed like a bit of fun at group and baby signing was meant to be good for Tyler's communication so we paid immense attention. Chris-Ann each week taught us various songs and made signing look so easy, my personal favorite was a song about a bunny digging his garden, she always said it was her favorite and would become very animated while singing it. Chris-Ann was also the very first person I ever heard say the words 'Mr. Tumble'. She was an avid fan.
During these groups Chris-Ann would also become very animated talking about her daughter, Andi-Mae. Andi-Mae was born with Down Syndrome, had struggled with early speech development and had found signing with Makaton a lifeline in communicating with her family. Chris-Ann told a particularly touching story of the day Andi-Mae first signed ball to her and how amazing it was to have her communicate that way. I had never met a parent of a child with Downs before (how sheltered was I back then?) and was amazed that they both seemed so full of life and happy and normal.
Had it not been for the twist my life took then I probably would have carried on in my little bubble of 'normal' and forgotten all about that group and the lady with the crazy socks. However right about this time I fell pregnant with Robyn and we found she would probably be born with Downs. (See my first entry for the details). I felt the fear of the unknown I'm sure most people would have in that position. And I racked through my brain for people to talk to with experience. Chris-Ann came to mind. I decided that at playgroup that Friday I would catch her at the end for a chat. However that conversation was never to happen. Personal circumstances in her life meant she had to take time off from everything.
However I held on all the way through my pregnancy to that memory of how awesomely this lady and her daughter were getting on with life and how I could do that too. She truly inspired me to believe that I could do this.
Once Robyn was born things obviously took their own course for a while but once we got back into the swing of things we started attending playgroups where we would see Chris-Ann. It was around this time we learned she had cancer. And yet that wonderful personality still shone through. The first time she met Robyn she didn't want to talk about herself and her own problems, she wanted to hold Robyn, she wanted to chat about everything going on in our lives, she wanted to give me advice on how to manage things better with nurses and appointments. She always wanted to help anyway she could.
For a while it seemed the cancer was beaten but today i learned the sad news that Chris-Ann passed away last Friday.
There will never be a way for me to repay the inspiration she gave me during a scary pregnancy and some very hard early days. I can only hope that knowing she was loved and will always be remembered can bring some sort of peace to her family. I know that I will always be grateful to her for introducing us to a communication system for Robyn, and every time Robyn does new signs it will make me fondly remember that blonde mop, big smile and crazy socks.
Rest in Peace Chris-Ann, missed always.