The joy and worry of caring for Lewis
MY day starts at 6.45am when I start cooking breakfast and making packed lunches. Lewis will stay in bed while everyone gets ready for school and once his brothers and sister have left I can get Lewis and my youngest son ready.
If Lewis has decided he is going to school, he will get up at 8.15am. I have tried getting him up earlier by going into his room and opening the curtains but he reacts by getting out of bed, closing the curtains, shutting the door and pulling the covers up over his head. He is behaving just like a teenager in that he's responding biologically to what's happening to him but the challenge is that he's a teenager with autism.
When he does get up, I encourage him to wash before he takes a range of vitamins and medication. I then update Lewis' communication book so I can keep the people who are working with him at school or at Barnardo's in touch with what has happened at home.
Although Lewis can say what he immediately wants, like "no talking" or "I want a video", he's not so good at talking about his feelings and won't say if there is something that has happened that might affect his mood. If he's had a poor night's sleep, I need to write that in his diary so the staff know that he will be tired and maybe feeling miserable. It's equally useful for Barnardo's to tell me if he has eaten all his dinner or has gone for a walk.
At 9am, Jim will take Euan to nursery and I will go and sit in the car. Lewis will be standing outside the car but will not get in until he's finished going through his rituals. The car radio must be off and I have to be sitting quietly. If I turn the radio on, he turns it back off again and has to start his ritual all over again. At the moment these rituals look almost like some kind of dance - something a North American shaman might do. He twists his hands and it's almost as if he's lining something up for himself. If you interrupt him he has to go back to the beginning. When he's finished, he jumps in the car and says "good boy" and I know we can go.
While Lewis is at school, I get the chance to catch up with the endless household chores that come with having a big family. I might order over the internet the gluten-free food Lewis eats, or spend time going over plans for the rest of the week.
At 2pm, I will get on with errands and pick up Euan from nursery before arriving at Kaimes School on Lasswade Road an hour later. I go in and get Lewis' coat and bag and tell him I am waiting in the car. He can take anywhere between 20 minutes and two hours to come out. Changes in routine can upset him and can make him take longer. He also likes school so it could be that he doesn't want to leave. For Lewis his rituals are a way of controlling things. With his poor language skills, particularly talking about feelings, he doesn't have the same control over his life as he can't say if he wants to stay somewhere for another ten minutes. He shows us what he wants through physical actions.
When I'm sitting and waiting for Lewis at school, I have started meditating to keep me relaxed. If I am getting annoyed or upset, Lewis will pick up on it just by looking at my face and run back into school. He doesn't have language so he picks up on people's feelings really well and he can tell if someone is telling the truth or lying. If you say you are happy and don't mean it, he can spot that.
If he is taking a long time to leave school, I just breathe deeply and stay calm. It's a skill I get to practice all the time so it's becoming second nature.
On the days Lewis doesn't go to school but is happy to get dressed, we can have an outing. I have to allow plenty of time for it because if it's a place he likes, like the fish shop, he won't want to leave immediately. He is now over 5ft tall and strong with it so there's no moving him until he's ready!
Jim and I juggle our days so that if Lewis doesn't go to school, someone is at home. Each week we discuss what's important to us and work out who can be around. With my work, I might have to travel so Jim, who runs a serviced office space in Bathgate, will alter his appointments and be at home if needed.
Jim and I try to go out alone together at least once a month. To sit, talk and relax with each other is so fundamental to keeping our relationship going. I know of situations where the parents of autistic children have ended up splitting up. Having an autistic child is so demanding it often pushes people to their limits, particularly when the support is not always there. Having some time together where we are not interrupted is so important because our relationship is intrinsic to the health and wellbeing of our entire family.
Lewis' autism was diagnosed when he was almost four years old and that has affected the whole family. When my other children meet a kid with special needs they don't bat an eyelid, which always touches me and, while Lewis presents his challenges, sometimes it's just genuine sibling rivalry that goes on - like when Lewis won't share the PlayStation.
Lewis is on a gluten-free and dairy-free diet which we all eat so when he goes to Barnardo's it means we can have a treat and eat pizza or steak pie. It also means we can venture into town where it's busy - something which is usually too much of a challenge for Lewis.
With Lewis, I also feel like I need to have this radar on and be sensitive to what might happen next, because he's bright and going through puberty, so there is the potential for a lot to happen. When he goes away for that night, it means I can switch off.
Sometimes I think about the future and I worry about what's going to happen as we won't always be around.
I think the people at Barnardo's have done so much for Lewis. Now, he is accustomed to staying away from home with other people. As parents, we always try to protect him but he has to learn how to do things without us being there. Staying at Barnardo's also encourages him to use more language because he has to do more to explain what he wants. Everyone there is very committed and caring and will talk carefully with me about what's going on with Lewis. I think it's an excellent service.
When everyone gets home at 5pm, we all eat dinner together and the kids will busy themselves with their chores and homework. I try to encourage Lewis to join in and will also spend time with him reading and playing.
Lewis is a happy, intelligent, handsome young man with a sense of humour who we love dearly and include as much as we can. Everything has to be done with his needs in mind but we are far from alone. Over the years, we have received a huge amount of support from friends, family, volunteers and professionals. We are sometimes even touched by the kindness of strangers.
To all of you, a big heartfelt thank you.
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Monday 20 May 2013
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