Enjoying the Rollercoaster Ride
Author: Melanie Phillipson with her son Mark
I am, like so many others in Derbyshire, a primary carer and lone parent to two fantastic teens. My youngest has high functioning autism, and beautifully controlled epilepsy. Like most of you who are caring for someone who you hold dear to your heart it can only be described as an emotional rollercoaster.
Well this is my life, and my two children’s. They are both hard workers, ambitious, and addictive personalities. My son also has a few other traits; he is a practical joker and like most teens he loves money, and has even asked shops directly for work. Mark is quite 'money minded' in fact when his sister moved out to her boyfriend's he thought it may be an idea to sell the rest of her stuff, and make a profit, naturally you could hear my daughter’s squeals from Oxford.
Over the years Mark has made friendships with our local bus drivers, who he started waving good morning to, and now they wave to him. He knows and talks to our elderly neighbours who he makes cakes for and loves their pets. He makes his own hair appointments and has developed a good friendship with the hairdresser Mel, and her husband Mick, as well as the people in the shop next door. Mark is so popular in our local community, these are just a few of the many people he knows; he also has friends in town and has been offered work in our local restaurant - but told them no thank you! My daughter says we are just attachments to him and when he is there we disappear. We are frequently referred to as Mark's mum or sister, I don’t mind this but sometimes his sister does find it hard.
We have so many rules at home but the main one is that we love and support each other …. no labelling, and we value what is being said. This is something that began at school and we have continued this at home and this has been very effective. My son did not speak until he was 6 years old and now he can talk non-stop about the things he wants to do, has done and the things he has found out.
We have played more board games than I care to remember and sometimes still do if the weather is wet. We have also used social stories that have worked well, for example we used his bear, gave it a personality that matched Mark's, so this was then used as a reflective measure and it worked well. I did type up some stories and print them so that he could read them later and you would hear him laughing as he read them. Cheryl also enjoyed the social stories and soon she too was making them up, some had me laughing too! We also have what is called a 'good boy sweet tin', which was used for incentive purposes but now you would think my children are angels when you see them raid it … lol.
We also have family meetings this is where his sister, my son and I come together and talk about our interests and areas of work tasters. He has been on two now: one being at the BBC Weather Centre and the other with Skillset, a computer gaming company. He really enjoyed the experience of both of them. Prior to this Mark wanted to have a taster at Cadbury World, but when it was later taken over by Kraft he changed his mind. But we did go on many visits to the place, and he did get to know the staff that worked there too. After what felt like the tenth visit I told them I was there in body but not in spirit which worked well as they then ignored me and focused on Mark - as if he was there alone, and at one point they got him to put on overalls and told him to give the presentation, which he did pretty well actually. Mark has also joined fan clubs whereby he wrote a number of letters, and Christmas cards to them - some celebs have also responded and written back.
At present Mark wants to be an entertainer, as he is currently taking electric guitar and singing lessons, with two totally amazing musicians Liam, and Mick, from Ashbourne Road Music School. They too are aware that this is Mark's interest not mine, and really do well interacting with him. Mark has a great friendship with them both and Liam has agreed to be Mark's PA once he begins his transition from school. Mark has also insisted that I sew vast amounts of sequins on the back of his denim jacket, as well as velcro on some jeans and t-shirt, to be honest though I never thought this would turn out quite as good as it has …hidden talents!
Whilst supporting him on his work tasters, I stand back and observe, I will only get involved should I feel he is struggling in any way but thankfully he has always been fine. He has been to so many classes over the years and would find it hard to sit still now. But these are his interests not mine; for me seeing both my children progress and lead proactive lives is the important thing. By doing what I have done and using my experience I am now supporting other families, so their children can hopefully be as lucky as my son and I love every minute of this.
We have got to the stage where we feel that it is time to begin a transition from school into the community. Like I have already said Mark does want to be an entertainer, but he has also agreed to have a go at working in a sweet shop one day a week, for a while to see how he gets on.
Although this is my norm, like many parents my children are special to me and I love them dearly. My daughter kindly reminds me that my son has accessed more than most, and that I sing and dance on tables so as to get what he wants ….not a pretty sight, but if he feels he wants to do something and needs support I will go as far as I can so that he has the opportunity to fulfil his ambition, but once there, it is up to him to do his part. And not only this he has asked to do a certain topic, and has been lucky.
There is no reason why people like my son should not have ambition, and lead an active life so long as the support and positive encouragement are there for them and their family. I am not certain what my son's future holds, and with the cut backs in so many areas it is also hard on those who want a position within voluntary work, but I will do my best and carry on supporting my son and others the best that I can.
Now for the difficult side of being a carer, as I have mentioned my son has epilepsy and even now this can put a lump in my throat. Mark did go through a phase of not allowing me to talk to certain friends and would pull me away saying I was his mummy, thankfully the school helped with this issue and all is well now. Mark's last fit took three days for him to properly recover from, and me a bit longer as I struggled to relax. But I have had the school's help and things have eventually returned to normal. This was helped along with some blackmail money to get my son to go swimming again, so I was soon smiling again at his cheeky personality. I do try not to look at the negatives and try and focus on the positives, as he is constantly making progress … well so long as nothing breaks, and everything is working as it is meant to do!
So as you can see my life is a rollercoaster, thankfully with more ups than downs, and with lots of hope it will remain this way, so that he and his sister will lead rewarding futures.
The publisher is The Centre for Welfare Reform.
Enjoying the Rollercoaster Ride © Melanie Phillipson 2011.
All Rights Reserved. No part of this paper may be reproduced in any form without permission from the publisher except for the quotation of brief passages in reviews.