Category Archives: Blogs

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.

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.

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.

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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Creating Job Options


The world of work has changed, in part because of new technology but also in expectations of us as employees. Jobs have become more generalized. Retailers, in particular, want flexible employees who can perform multiple tasks. Why is this? Well, as my guest on the latest podcast Yes She Can Inc, Marjorie Madfis said, businesses aren’t in the business of employment, they want as few employees as possible.

The impact this trend has on young people with additional needs formed part of the discussion with Marjorie. She explained that around 80% of adults with autism in the U.S are unemployed and, as the parent of a young woman with autism, she decided to take things into her own hands and create a reselling business called Girl Again. This reflects her own daughters’ interest in American girl dolls. This decision was also driven by her observation that the programs that were supposed to be developing her daughter’s employability skills were not training her in the skills she really needed in the workplace. These included understanding the priorities of others (managers and customers), shifting from one task to another, and dealing with uncertainty and incomplete information.

These types of skills that are harder for our young people with additional needs to develop. In my own daughter’s case, she likes to know “the plan” and changes to that plan do upset her. So I can only imagine what the result might be in a workplace if she was asked to move from one task to another, or something unexpected happened.

One of the keys to the success of what Marjorie is doing seems to be in her actual choice of business type. Girl Again is a reselling business. They receive donations of American Girl Dolls and then sort, clean and prepare them for resale. The dolls are then sold in their retail store as well as online. This process enables the development of a variety of skills because, as Marjorie says, if the dolls were brand new the number of steps in the process would be small. The great thing about a reselling business is it can be in anything that a young person is interested in… I wonder if there is a market for second-hand Harry Potter merchandise!

But, and its quite a big but, it is often the case that even with all the employability training in the world some young people with additional needs will still find it hard to develop the transferable job skills talked about above. They may have an excellent set of narrow skills which may not fit into today’s job market. The answer to this dilemma, according to Marjorie, is to look at smaller businesses where specialization can add value to that business. She uses the example of the real estate company who have sales staff doing data entry rather than out selling houses. The right person with the right skills could free up their time. The key here, as with a lot of what so many people I talk to on the podcast are doing, is making people see that someone with additional needs can be as productive in the workplace as anyone else.

 

Guilt Trip – No Postcards Please


Guilt! More Guilt! Lots of Guilt! That’s one of the things that I really got from the latest podcast, Wake Up To Sleep, even though it was about sleep. But guilt does surround us if our child is not sleeping. In fact, so many things we do as parents and carers to children with additional needs carry around feelings of guilt even when they’re not warranted.

Vicky Dawson from The Children’s Sleep Charity talked about how parents feel guilty when they can’t do something as basic as getting their children to sleep. They feel judged, and maybe we’ve all done it. Perhaps we’ve all once thought, well if those kids had proper bedtime routines…. But it’s a very small minority of parents who don’t care when their children go to bed, so in 99.99% of cases, the judgment is ill-informed. It comes down to what is expected of us as parents how our children should be according to some arbitrary “norm” and we all feel guilty when we fail to achieve this arbitrary gold standard.

Like many parents my guilt started very early with, “what did I do?” and “am I responsible for how my daughter is?” Of course, over time I’ve realised that’s not the case but, intermittently, those thoughts return and need to be slapped away.

Guilt when my daughter has to go to the hospital. This used to much more of a regular occurrence but now we are down to about once a month, so less guilt you’d think. Of course not! In fact, it has got a bit harder as she has gotten older and questioned why she has to go to hospital. We are in transition at this point from a children’s to an adult’s hospital, and although we have always tried to make sure medical professionals talk to her, not at her (not always easy), and try to involve her in decisions, there are some decisions she isn’t actually mature enough yet to make. These decisions may impact on her long-term health and potentially her independence. So with hospitals, there is a decent serving of guilt for putting her through things she hates, and she tells us she hates, but which we know will help her long-term.

Guilt she doesn’t have enough friends. This is my problem alone because as I’ve said before I’m not even sure she is one of those people (unlike me) who needs lots of friends. But as I’m responsible for her social life, then I get the guilt of feeling have I done enough?

Guilt she watches too much of her tablet. Yes, we ration her, but sometimes when she’s been busy and is clearly overwhelmed and needs time alone we do let her retreat. Maybe not perfect parenting but practical parenting and we do have every parental control possible on. However, as her favourite viewing choices are The Big Bang Theory and Friends, I’m claiming this as an educational tool!

Guilt about being happy when I have a break from her. I’ve got over this one pretty quickly when I realised she relishes this time even more than me. Away from parents means she feels grown up, independent and all the things she strives for. No need for guilt on that one.

I could go on but then I’d feel guilty for taking up too much of your time! So let me sum up what I really think about all this guilt. It’s not my fault but it will be at fault if I don’t do absolutely everything I can to give her every opportunity she deserves to live the kind of life she wants to live. So note to self, STOP IT!

Who Needs Friends?


If you listened to last weeks podcast you would have heard Christine Draper explain that her son Luke doesn’t have friends. This is due in part to his dyspraxia, which made it difficult for him to develop a network of friends when he was young and do the things boys his age did. As a consequence, he never made friends when he was younger and so now doesn’t actually miss not having friends

I’ve talked quite a bit before about the importance of friendships to me. My friends particularly those who get having a child with additional needs have helped me through some pretty tough times.  So, hearing Christine talk about her son was a bit of a hard listen for me. She obviously knows her son well and doesn’t think it’s an issue or him, particularly as he has a very close relationship with his sister.

I, on the other hand, still firmly believe my daughter needs more friends. But maybe I’m wrong.

It is the summer holidays here in the UK now, which presents some challenges. None of her friends from school live close enough for her to really catch up with easily. So, it becomes a task in itself to organise catch ups and when we do she doesn’t seem that bothered to see them. But is this a case of chicken and egg? She doesn’t see them enough, so she doesn’t think she needs to see them. Or is it she needs to see them more to find out how to be a friend?

This is an issue that isn’t going to go away. It was inevitable that she would grow apart from the friends she had when she was younger as she faced different challenges and couldn’t manage to the level of independence that they all grew into. So, the friends she has now are similar to her, which means that they aren’t yet mature enough to organise their own social lives.

So, it becomes our job and, frankly, I’m not sure we are that good at it. It’s especially hard for my daughter too as she sees her older sister organising her own social life, seeing friends and going to parties. My youngest may not actually want the same kind of social life but she wants the choice, and we don’t and actually can’t really give to her. She is simply not ready to be let loose in the complicated world of teenage social lives.

Even if she was let loose, would she choose to organise to meet friends? I simply don’t know. What’s the answer? Well, business as usual. I’m going to try and organise her social life as best I can. Just like Christine, I hope I know my daughter well enough to be making the right choices for her when it comes to friendships.

Right In The Centre


I spend a lot of time thinking about how I can make sure my daughter has a happy life long after I’m gone. I can put in place a lot for her, like income and help her build the skills and resources she will need, but her happiness long term will depend not on me but on the people around her. The right kind of friends, the right people keeping an eye out for her. She has a sister, but it doesn’t seem fair to say to her sister she is your responsibility. Of course, she would take the responsibility willingly, but my youngest wouldn’t actually want to feel that her older sister was her guardian. The solution I think is community.

How to build community? You can only build community if you are part of it. What brought on these thoughts? Well, as always, the podcast gets me thinking and the latest was an interview with Clive Harris at The Shed. He talked about not wanting to provide a day care centre but rather provide a space where people came together and through meeting each other changed their perceptions about each other. When it came to finding a location for The Shed it was a case of the location needing to be in the centre of the community, in this case on the main street. As he said people often have a set perception of what a young person with additional needs is and can be. People too often underestimate them and their capabilities. By seeing people every day in their ordinary lives then preconceptions change, and understanding can grow.

If you’re not familiar with the daycare centre model, people with additional needs are provided with daily activities in a protected space. Nothing wrong with that I hear you say; of course, there isn’t, and for some people, this is what they want. But often this is a standard response for everyone and it simply isn’t a case of one size fits all approach when it comes to people. If you listen to the Journey Skills podcasts you will know 40 episodes in there are many organisations out there stretching people and challenging perceptions.

What a lot of these have in common is they are in the middle of the community, not separate. I don’t believe my daughter will believe she is living independently if she is not able to engage with her local community and feel part of something. That’s not independence. Familiarity breeds understanding. I would be lying if I didn’t say that meeting people I don’t understand scares me. It’s the unfamiliar. I think many people are like that when it comes to additional needs. Their views are often based on stereotyped ideas. We all need to talk to the person first not a label. So, places like The Shed, right in the centre of the community, daily challenging perceptions are helping to create a better future for every young person with additional needs.

Why Supported Internships Work


Let’s start with a bad then a good statistic. Somewhere between 50% to 70% is the unemployment rate among young people with additional needs, depending on which website you visit. A good employment statistic happens on a Project Search program at the Marriott (the topic of my latest podcast Project Search at the Marriot), where around 70% of the young people completing their year-long program get paid employment at the end. As well, much of this is in full-time positions, not part-time.

How do they do it? through a much more integrated and systematic approach, and having very clear roles for the staff supporting the young people. So, as well as the program tutor there is a job coach and a job developer. The young people coming onto this supported internship program train with purpose, train with help from a job coach and have a job developer to ensure that by the time they complete the program, they not only have a better idea about what they want to do, but they also have links with prospective employers and, in many cases, have a job waiting for them when they graduate from the program.

The job coach, as the name suggests, is on hand to help identify the strengths of the young people and where they might see their work future. So, although this particular program is based in hospitality at the Marriot, the job coach talks to each young person about what careers they are interested in. These need not be in hospitality, in one case a graduate of the program now works in a skilled role in the care sector.

The job developer role is key though in breaking down the barriers with employers. It doesn’t really matter how ready, willing and able a young person is if there is no job for them to go to. Finding a suitable employer who is open to hiring someone with additional needs can be quite a challenge, according to Sam the job developer. However, she has also noticed that there is a growing shift in perceptions around what young people with additional needs can do. One thing she advocates is the idea of using unpaid trials as opposed to the usual interview process where sometimes a young person will perform poorly because of their lack of language skills. An unpaid trial can take the formal element out of the equation and allow the young person to show an employer how well they perform in the workplace. This means the employer can consider their capabilities rather than basing their decision purely on the interview alone. This gives the potential employer the opportunity to see just how capable the young person is and breaks down the “fear factor” that a lot of employers have and show them the young person’s real capabilities.

The ongoing support provided to employers seems key to this program’s success. The tutor, job coach and job developer all continuously support the young people, but this support also goes outside the confines of the program when they move to paid employment. This support seems to have been the difference in some cases as to why an employer has taken on a young person and why as well they have been able to make those “reasonable adjustments” we’ve talked about in the past, which ensures a young person can perform the tasks required. Often these reasonable adjustments are simple things an employer wouldn’t think of, but which fundamentally change the way a task is done without impacting on the quality of the outcome.

Project search and supported internship programs like it prove that with the right support and strategies it’s possible to break down barriers that exist among employers and sometimes the young people themselves, preventing them from working in jobs they want rather than the traditional jobs they might have been expected to take on.  More supported internship programs like Project Search will go a long way toward solving the lack of paid employment opportunities for young people with additional needs. Just as importantly every single young person who graduates from a program to paid employment helps in changing the perceptions towards young people with additional needs and their ability to have full-time paid employment.