Category Archives: Featured

It’s Good For You

We all know playing sport is good for you, but I didn’t really encourage my youngest daughter to get involved in sport at school. Why? Well, it was a combination of reasons. She has a problem with coordination so many sports would not have suited her. I worried about the impact on her confidence if she was the worst at the sport. The last picked for a team, many of us have been there, I wasn’t the first choice. I’m guessing my daughter would have been the last choice. She looks a bit different, so I worried about others making fun of her. She wasn’t as mature as her peers, so I worried about her saying or doing the wrong thing. So basically, I worried about a lot of what if’s.

This may have been different if I had known Lisa Pugliese, from Love Serving Autism. In the latest podcast, she explains how accessible tennis can be for young people with additional needs. Because tennis is a repetitive sport, it suits young people who take time to learn new skills and/or don’t like change. Like all sports, it offers not only physical benefits but also has social benefits. However, because it’s not a team sport, social skills are less essential in the beginning. Part of Lisa’s approach is using tennis as a therapy to slowly build the physical and social skills of the young people on the program. With tennis, there isn’t pressure over letting teammates down. Lisa shows how tennis can be made to fit the young person rather than them having to fit the sport.

If I look back to when my daughter was younger, armed with this insight, I can find other sports she would have fitted into. Now, when I hear from other parents who did take the risk, I know how important sports like football are to their children. Indeed, it’s given these young people more ability to deal with rejection, which makes them more determined, and helps them navigate the social world in a much more mature way.

I’m not saying, of course, I let my daughter do absolutely no physical activity. If anything, I pushed her into other things because she wasn’t doing organized sport. Her physical exercise became walking the dog and walking to places instead of driving. Fortunately, we were able to teach her to ride a bike, all credit to her Dad for that one. In fact, you can download his  9 steps approach to this from the website. And it should have been more obvious from that success why playing a sport would have been good for her. After she learned to ride a bike her confidence soared because this was something she was good at. In fact, we still laugh about when we took her out on her bike and we decided to walk – after all, how fast could she go. We soon learned pretty fast as we sprinted along the track just trying to keep her in sight! We never made that mistake again.

But it isn’t just the physical benefits of sport she has missed out on, it’s the social aspect that is actually more important. Like many young people with additional needs there is a very real danger that she can become isolated. Sport helps with this because you become part of a team, with a common purpose. It builds your sense of belonging. She would have learnt to follow the rules. She would have learnt patience because I doubt she would have been a natural at any sport, so she would have needed to practice and practice some more. She would have developed more resilience as her team won and lost. These are all characteristics she has without sport, but I genuinely believe she would have developed more of each if I had worked to find her a sport that fitted her.

Of course, there are always what if’s in this journey with our children. I have at least one of those each day. The important thing is to recognize when we get it wrong and move on. So yes, I’ve already started looking for a local tennis club so see if they fit her.

Why I’m Just A Parent And Proud Of It

I’m writing this whilst sat on a sun-kissed beach watching my children swim in a crystal blue sea. Tomorrow we are off to Disneyland for a private dinner with Cinderella. Not really…. but just for a moment, you might have believed my highlights reel. Actually, I’m sitting at the kitchen table writing this and, like every week, wondering if I have anything worth saying. After all, I’m just a parent.

I’m just a parent, have you ever said that to yourself? I know I have, particularly when I’m being lectured by the experts about what I should be doing. Then add in those perfect parents who do seem to be on those sun-kissed beaches most holidays. They never let their children eat junk food or sit on their tablets for hours. Then let’s add to mix the media telling us every day that we should be doing something different to what they told us the day before.

It’s not hard to fall into the trap of looking around and wondering if you’re doing IT right – whatever IT may be.

So if these doubts have ever crossed your mind then go have a listen to Claire Sutton talk about being the light. She talks about just being there for our children, and that’s all we actually need to be doing. We need them to know that whatever, wherever and whoever, no one matters more than they do.

I know, based on what has happened to us as a family, you have made some pretty major sacrifices for your child. Maybe lost friends. Certainly spent money you maybe didn’t have just to make sure that your child had everything they needed.

I’ve talked before about mourning the life our children will never have and recently saw a great quote from Colin Farrell about the death of one dream being the birth of so many more. I have never talked to another parent who doesn’t say how much their son or daughter has enriched their lives. I wouldn’t change my daughter I just wish I could change the way the world sees her and, sometimes, treats here. She is an amazing young woman who is funny, feisty and like every other teenager in history constantly pushing the boundaries for independence.

Claire talks so eloquently about “just being the light”, making her daughter understand that whatever happened she was going to be there. Claire’s daughter tried pushing her away, but Claire stood firm. She was a wall of belief in her daughter’s recovery of self-worth. But as Claire admits she said things that she wasn’t sure she believed at the time, but she said them anyway because that’s what our job is to say what our children need to hear.

If we don’t believe in our children who will? And, more importantly, if we don’t believe, how will they know anything is possible, particularly as too often the world tells them so much is impossible. I remind my daughter regularly that she will one day live independently in her own place with a job. There is the ulterior motive there that I no longer have to change her bedding or do her washing, so I call that a win-win. Do I wonder some days how this will happen, of course. But my job is pretty simple: tell her it’s possible, and then find the way to make it possible? I’m just a parent, my daughter’s parent, and that’s all I ever need to be for her.

Be The Light

Podcast Episode 47. The job of a parent is to be there whatever and whenever for your child – those are the rules! Continue reading

What’s In A Job?

What’s in a job? An awful lot, I believe, if you’re a young person with additional needs. I should qualify that by acknowledging that for some young people there will be restrictions on the kind of jobs they can hold down because of the nature of their needs. I know certain jobs my daughter has expressed an interest in won’t work for her, like being a tour guide at Harry Potter World. She gets anxious in large groups. But I do remember one parent telling me how important it is to work with what our children want to do, and try and find a creative way for them achieve that. So for my daughter possibly a tour guide in a smaller attraction is an option.

In my mind I have this plan: my daughter will one day have a job, earn her own money and live independently. But it isn’t a plan with a timescale attached. She is 16, so plenty of time to worry about that later, right? No, wrong! the years fly by. So instead of just talking, I need to start timing the plan. At the same age, my oldest already had a part-time job on the weekend. This not only helped her confidence, but it gave her a sense of control over her own life because the money she earned she could spend any way she wanted. A sense of control is an essential part of growing up, and one many young people with additional needs miss out on. The fact is very few young people with additional needs end up having part-time jobs while still in full-time education.

So what is the first step to getting this part-time job? One option is to start with volunteering because there needs to be a dose of realism here. Volunteering can enable her to experience the world of work without the pressures that come with a paid job. But this has to be temporary. Volunteering, in my mind, is not a job; it’s giving something back to the community, which we should all do but it won’t help pay the bills.

Another option could be asking friends with businesses to help out with some work experience, unpaid at first most likely. Most of us know people who have a business, and maybe they have a role which fits into what your young person is interested in. If you’re very lucky you just happen to have a friend who owns a video games company or a chocolate factory. But I don’t think the role is as important as the responsibility of having to be somewhere, to do something. That gives the sense of progress towards independence.

If you are lucky enough to have one of the organizations I have talked with on the podcast on your doorstep, then this whole process might be easier. Approach them and see what connections they can help out with.  This is a good chance to start planning ahead because if you’re similar to me your son/daughter is still at school so not in need of these services just yet. Organizations like Invictus Enterprises, Team Domenica, Acceptable Enterprises, Yes She Can Inc. and bemix are ready and able to provide the stepping stones into paid employment.

In so many ways we support our children, so helping them transition into paid work is just another one of our many challenges. But I feel the rewards will be worth the struggles. I can’t wait for my daughter to get her first paycheck and choose to spend her money on something I totally disapprove of. A job will equal more control over her life, more choices and she deserves this just like everyone else.

Invictus Enterprises: Building The Steps Into Work

Podcast Episode 46. What happens to young people with additional needs when they finish full-time education? How will they find employment? How will they cope on their own throughout adulthood? Continue reading

Get The Basics Right

My oldest daughter has just moved out of home to go to university. My dream is that one day my youngest daughter will also move out, maybe not to go to university but to at least live in a place of her own. So as my oldest headed towards an independent life I suddenly realized that even she had some gaps in her knowledge of daily living skills. But I know that she will adapt very quickly and be fine. Could I say the same for my youngest daughter with additional needs – I’m not sure.

We have been working on some skills with our youngest particularly in areas like food shopping. She is referred to in our house as the trolley queen because, despite a difficult start where she really needed warning lights, she is now very adept at manoeuvering around the supermarket. She also knows where most items are in our regular supermarket. She is an expert at self-checkout and we often send her in alone (we are of course lurking outside the only exit) with a small shopping list. Contactless cards are surely the future!

What got me thinking about how much we have taught her was that talking to Lisa at Team Domenica in the last podcast she said that often the young people that come to them lack some of the basic daily living skills and I started to question whether this is also the case with my daughter.

How many times have we not given our daughter the chance to do things herself? And it’s not because we don’t want her to be independent or that we don’t think she can do it even. It’s that protective thing that last so much longer I think when you have a child with additional needs. I don’t want her to go into a café and order a drink and be embarrassed because they don’t understand her or for her to give the wrong money. Why do I still take her to the hairdresser when I don’t need to be there. Why doesn’t she look after her own train ticket when we are out? Make her own lunch all the time. Am I protecting her or making her transition towards independence slower and more difficult.

I know I’ve talked before about letting go before but listening to Lisa was a reminder to stop talking about it and do it. I’ve treated my daughter differently. Okay so maybe my youngest has it over my oldest when it comes to the supermarket but that was probably it. My oldest was encouraged to go into shops to order for herself. As she got old enough she was responsible for washing her own clothes. And yes it sometimes meant she had no clean clothes, but she soon figured out the solution was regular use of the washing machine. With my youngest it’s all too ad hoc, I pick things she can do easily not things that will challenge her.  Am I simply too hands-on with my younger daughter probably – actually – no definitely. So it’s back to basics, if she should be doing it then from now on she will be doing it by herself. These skills may seem easy and basic to me but to her, they are the first big step towards independence.

Team Domenica – Supporting Success In The Workplace

Podcast Episode 45. Successful sustainable employment opportunities for young people with additional needs comes when support is provided for not just the young person but also for their employer too. Continue reading

Tell Me A Story

Do you have a favorite story? Mine is The Magic Pudding, an Australian tale of … you guessed it … a magic pudding that no matter how much someone eats of him, he simply grows back again. I’m sure there are many of us who would love a Magic Cake on hand.  I’m not sure why this is my favorite story, maybe there are deeper reasons related to coming back no matter what happens, but maybe it’s much simpler – I liked the story. Why this analysis of my childhood reading habits? Well, partly, because my latest podcast Using Storytelling To Build Self Worth with Diane King was all about storytelling, and its importance in all our lives. Diane has also written a children’s book Ruby Red which is about a young girl with additional needs and how she navigates through her life.

My daughter had a favorite story called, How To Catch A Star. From early on, though, we tried to use stories to help her understand her world better. There was a series of books we used with titles like, How Hattie Hated Kindness and A Pea Called Mildred. These books were designed to encourage children to think about why they felt a certain way. So, for example, Hattie thought she was rubbish and the book was all about making her understand that she was as important as everyone else. A pretty important message I think for young children with additional needs who have started to wonder why they are different.

I didn’t realize it then, but we were trying to teach our daughter in a way Diane described as caught learning, not taught learning. The message was delivered in a way which didn’t seem about the teaching. I don’t think my daughter would have understood if I simply sat her down and told her you’re great (which she obviously is). But these books helped her see that she wasn’t the only one with these types of feelings. These books aren’t just for children with additional needs, but we found them a way to reach her and show her feelings like this are normal.

Don’t get me wrong I love these books, but I do wonder now if they were too heavy on the message and maybe missed something in the story and the rhyme and alliteration. After working with speech and language Diane became aware of the important link between rhyme and alliteration, and its role in helping children communicate. This led her to write her book Ruby Redas a rhyming adventure. Looking back at both my daughter’s favorite books, I realize now how much she preferred books with rhyme. Another of her favorites series was Hairy McClary, especially any stories where Schnitzel von Krumm featured.

I’m not going to lecture anyone on the importance of reading for our children, particularly if a child struggles to read, but it is an important part of how we discover our world. And, as Diane talked about, it’s a place to express emotions, to be scared, to laugh, feel empathy and feel all the kinds of things my daughter found quite difficult when younger, and to be honest still struggles with today.  All this immersive interaction with the story allows our children to experience different emotions in a safe and controlled environment.

But I think we need more books like Ruby Red and Josh Has Dyspraxia, whose author Christine Draper I talked to in Episode 41 of the podcast. These books serve two purposes: firstly, to help our children understand they are not alone; secondly, more importantly, to educate other children in a non-lecturing way what it means to have additional needs. Both Diane and Christine have written fantastic books. Stories change the world, so maybe these types of stories can help change perceptions.

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