It’s been tough. But he’s our little boy and we love him. – #100days100stories

Maxine is a Scope sleep practitioner. She helps families figure out and practice sleep patterns that work for them. She talks about her experiences raising her disabled son George, who has congenital ataxia. She’s sharing her story as part of the 100 days, 100 stories campaign

George 2Thanks to Scope I’ve been able to get back to work and find the support I need to look after my disabled son George. It’s been difficult at times but I’m optimistic for the future.

We knew from when George was young that he wasn’t quite right. I’ve got six daughters and George was my first baby boy, so I thought he was just different to his sisters because he was a boy.

Once he got a little bit older things became a bit more apparent. We noticed that George couldn’t hold his own head, his head was wobbly and kept falling down to his chest and he didn’t open his left eye.

As a mum you know there’s something, you just don’t know what.

Once we went to the doctors things started happening quite quickly. We were referred to a pediatrician who told us at first that he had something called opsoclonus myoclonus which was curable. He told me that we had a chance of having a ‘normal’ little boy.

I came out with mixed feelings because I’d had George a year by this point. He couldn’t do much apart from lie down but he was my little boy. He was our George. I thought I could have this normal little boy but then I got upset because I thought I’d lose the little boy I’ve already got. It was really emotional. Like all mums I wanted a ‘normal’ boy but I didn’t want to lose this wonderful little personality that I’ve got already.

We later found out that they’d made a mistake with his diagnosis. A specialist we saw a bit later told us that his condition wasn’t curable and that they didn’t think he’d ever walk or talk.

Family reactions

We told George’s sisters who were all absolutely fine. They were so fine that I was worried they didn’t understand the situation! I had to sit one of his sisters down because she said that there’s nothing wrong with George. I asked her if she understood that her brother is disabled. She said: “Yes, why did you ask? I mean that there’s nothing wrong with him in my eyes”.

We celebrate

When we heard that he wouldn’t walk or talk our motto became – never say never. We weren’t in denial but we wanted to make his life as good as we can and push him as much as we can. And we do push him. We push him now and now he’s walking! We thank his school for that. We did a lot of work with him but there was one particular lady at the school who was determined he was going to walk. She walked him every day using a walking frame and after that the only way he would walk was holding on to you. He didn’t have the confidence to let go.

George 1Then one day at home, when he was in the lounge, he was clinging on to some furniture. I turned my back and then when I looked back he had walked across the lounge and stopped at the door. He then turned around, looked at me and went “haha!”. It was just a sound that came out but it was almost as if he knew what he’d done! At that point his dad pulled into the drive. His dad came in and he walked up to his dad. I don’t think I’ve cried so much in my whole life!

He was 7 years old. We celebrate things, but we celebrate them a lot later. Everything he does is a celebration.

It’s been hard

There was a time not too long ago when my husband was working away all week. That was hard at the time. George screams a lot and there have been times when this has pushed me to the end of my tether. I’ve been at breaking point before and phoned our social worker to beg for help. She just kept telling me that I was doing a great job and that everything was going to be fine. It just felt like nobody was listening to me.

I lost my temper once and told her that I can’t do this anymore. I need help. She turned around again to say I was doing a great job. I must admit at this point my language wasn’t the best and I said to her – you’re not living my life don’t tell me I’m doing a fantastic job when you’re not here. I’m not doing a fantastic job, I’m not coping, I need some help. At which point I hung up.

The thing that impacted us most was him not sleeping. He didn’t sleep. He got up at 3am every morning which was when my day would have to start.

Getting back to work

The reason I work is because of Scope. When I had George, I used to go to a group, a little singing group for other mums with disabled children.

There was a portage worker there, and one day she gave me a leaflet and said I should volunteer to become a Face to Face worker where you befriend other people in similar situations. She said you’d be really good at it because I’m supportive.

I got a lot out of being a befriender. It was really nice to go out and support other mums. I think I coped well with George’s diagnosis because I was a bit older. I thought how must it be for younger mums having a child with a disability. I’d already had 5 children.

Not long after this I trained to be a sleep practitioner. When I was doing the training George decided to start getting up at 3am in the morning. I didn’t know how bad sleep deprivation could be until George started getting up at 3am. Then I thought come on you can put this right, you’ve done the training, put it into practice. He was my first case! So I put a programme into place and within two and a half weeks he was sleeping. It really helped me have a really good understanding of a sleep problem.

In 2010 we got the funding to run the service as a proper paid for service and that’s when I went on to the payroll with Scope. It was nice to be working.

At the end of the day it’s really difficult being the parent of a child, any child, let alone a disabled child. It was really tough. But I’m now doing a job that I really love and I wouldn’t be doing it I hadn’t have had George, I thank him for that.

Find out more about 100 days, 100 stories, and read the rest of the stories so far.

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