Our Family

Our Family

Friday, 15 July 2016

All About The Boy

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.