Podcast Episode 17. Finding an interest as child, such as in sport, can lead to a lifelong passion that lasts right through adolescence and adulthood, and provides a strong connection to a community and a focus for life. This is the opinion of Maire who shares her story in this week’s podcast.
Maire talks about how a lack of confidence can lead to a young person to want to give up things they have always enjoyed. Combine that with a growing realisation that they are not performing at the same level as peers who seem to do the same things effortlessly, and the barriers to participation start to get higher.
Maire reminds us that it’s not always easy to manage the expectations of our children with additional needs or even what their siblings expect of them. For her son she looks to sport to help him find his purpose, build his confidence and find his own unique space in the world. As parents that’s our greatest challenge.
[.40] – All about Maire and her son
[1.15] – His primary school journey and finding the right secondary school
[1.40] – Learning life skills
[2.30] – Building confidence over time and with the right support
[3.30] – Making friends isn’t easy
[4.00] – Small slow steps
[4.30] – The challenges of having a younger sibling
[5.30] – When lack of confidence leads to giving up
[7.00] – Sport is the way forward
[7.30] – Stuck in the middle
[8.20 – Mainstream sport not inclusive
[9.00] – Cycling skills
[10.45] – Finding a purpose to build the feeling of success
[12.00] – The future and independent living
[12.30] – Healthy living
[12.45] – The difference boarding has made
[14.00] – The challenges of being a sibling
[15.15] – Getting involved in sport or activity when young so the interest is established
Get children involved young in something that interests them, whether it is a sport or another activity, so that this stays with them as they grow older.
DEBRA: This week we’re talking to Maire who has a son age 14 years with additional needs and she’s going to tell us a little bit about her journey, where she is today and what she would aspire for his future.
DEBRA: Welcome, Maire!
MAIRE: Thank you.
DEBRA: Tell us a little bit where you are now, how you got here, a little bit about your family?
MAIRE: So, my son is 14 and he was diagnosed with epilepsy when he was about three and a half. After a long period where he just hadn’t been a normally developing child and then we got some support through speech and language, got him into a small primary school and had a statement issued.
Through the primary years, he’s developments was obviously way behind all his peers. And the gap became wider and wider and friendships were hard to establish and it became very apparent that the mainstream secondary school would be inappropriate for his needs. We fought for more hosts and fortunately got more hosts at the school for him due to his speech and language as well as his epilepsy and his mobility issues. And he is certainly improving in those areas of weakness.
DEBRA: So, in terms of independence, what kind of things does he do by himself?
MAIRE: He’s in the boarding school and they’re teaching him life skills and how to become independent. He has gotten the first stage of his pass in the school and that means he can go out after school in the evening with one other student or other students who have got that pass but he’s not allowed to go on his own.
DEBRA: He’s obviously been able to go outside in environment with someone else with a peer which is that now the step?
MAIRE: Certainly, that is a step but he again needs to build up competence and confidence to cross the road and to make quick decisions where necessary to make sure his safety isn’t compromised. That would take time to do but again having the correct input and support to do that where you’re not under pressure to teach him what to do and how to do it which within the school grounds is done under a much more relaxed environment and appropriate teaching.
DEBRA: Do you think then outside; he would get stressed?
MAIRE: Definitely. He would get stressed if somebody was to approach him and ask him a question and he didn’t know that person or if maybe he thought the road was very busy and it was never going to get to cross the road because the green man wouldn’t come on, if he told he was going to be late for something or if he thought that he was somewhere he really wasn’t very familiar.
DEBRA: So, you said the school works on that, do you work on that at home with him to help him to deal with those stressful situations?
MAIRE: We do try but unfortunately, I work on a Saturdays so he’s with his dad on a Saturday and trying to get him to be positive about coming on a trip to address those kind of issues, he’s not really very happy to do that, he just wants to chill and he’s happier to be led into town rather than lead of into town. He doesn’t have any friends unfortunately, so he’s not got the backup to go with another individual of his age which doesn’t really help and that’s one of the problems with his type of condition, I suppose, that he doesn’t make friends very easily, he’s not easily understood and therefore to establish a peer group with which he is comfortable and those that will be comfortable with him.
DEBRA: What else do you think you could do then to, you said he was he doesn’t want to lead you when you go into town, do you think it’s a case of just slow, slow steps with him?
MAIRE: Definitely. His sisters are younger than him unfortunately which is very very mature and her street credit is extremely high compared to her brothers or so she thinks, but he gets quite frustrated because she can go off on her own and he can’t. But if I were to send the two of them together, it’s quite embarrassing for him for his younger sister to be showing him how to do things and it’s to wait maybe for another year or two until the gap…although it’s the same, it may be less apparent to him that she’s two years younger than him and she’s his baby sister.
DEBRA: So, he feels that at the moment. So, he’s definitely got that awareness?
MAIRE: Absolutely, yes.
DEBRA: So, do you think that with maturity that awareness might then grow into him thinking Well, going to have to do this?
MAIRE: I think so yes and actually it’s better than going into town with my mother or otherwise they don’t go into town so and I might meet some of her friends and may have a little bit more confidence with myself when I go into town.
DEBRA: So, this is a confidence issue for him?
DEBRA: As well as the ability to do it?
MAIRE: Absolutely. And how to deal with any scenario that might arise because
anything could happen when you go into town.
DEBRA: Other things that he likes to chill out on the weekend, is there anything in the house that he likes to do himself?
MAIRE: He likes to play in his phone as do all teenagers, he loves to watch football on the television, would love to play in the team but he’s just comfortable being on the sidelines. He’s given up his baseball and he’s given up tennis out of school. Again, it’s an awareness of inadequacy in his part and again, it’s a confidence issue because when they’re at school during the week, they’re all the same and they do things together as a team. When he’s at home, it’s quite difficult to get him to be confident enough to come out and be comfortable with mainstream people.
DEBRA: So, the team sports he was playing were mainstream sports that he then gave up?
MAIRE: Yes, yes.
DEBRA: Is there any way that you think him getting back into that or that’s just him saying “I don’t want to do that because I’m not as good”?
MAIRE: That’s one of the main reasons and also because as these children progress in size, for example with the baseball, it becomes hard ball, with football the big boys become stronger, they become faster and he’s aware that he doesn’t have that those strengths. And so he wouldn’t be picked to be on the team, it wouldn’t be a natural thing.
I did try and involve him with, I will call it ‘Under 10 football’ in the park on a Saturday morning where he could go along with the trainers and help them alongside set up in the morning. And maybe could draw the young lads with where to dribble the ball or kick the ball, but again confidence is an issue, a big issue. He was not very comfortable doing that even though he would be good at it, he’s just not comfortable.
DEBRA: So, long term, do you think he might build that confidence back up?
MAIRE: Well, hopefully. And with school as well and with training, appropriate training for sports because I think sports is the way forward for him because he just loves sport, he loves looking at sport. He follows everything on television and he’s very enthusiastic and maybe at some stage whether it’s disability sport he becomes involved in or mainstream sport on a support of level for youth. Maybe that might be the way forward.
DEBRA: Have you looked at those or are you aware of any?
MAIRE: Well, he did a disability batcher and he did very well, but again, (this ‘again’ sounds very negative) but he doesn’t look disabled like some of the other children doing it on the wheelchairs and he’s very conscious of that. And he doesn’t like to be under the disability label but equally if that’s the way forward for him and if that’s the way he can progress in sports, that’s what we’ll have to do.
DEBRA: You make it sound like he’s almost stuck in the middle.
DEBRA: Because he hasn’t got the confidence. He’s got the desire but not the confidence to do things. He doesn’t wanna be labeled as having a disability but he’s not able to keep up with mainstream?
DEBRA: So he’s in a horrible….
MAIRE: He’s in a gray area.
DEBRA: He’s in a difficult position which hopefully change will come with maturity.
MAIRE: Possibly, yes. And the realization that actually if you conquer one way, the other way isn’t that bad. And actually you may sometimes have to settle for something less but actually you can do very well with it throughout of it.
DEBRA: Do you think that’s just he’s got that opinion from, I guess, mainstream people talking about disability sport or…?
MAIRE: I think it’s the basically mainstream sport is not inclusive, so straight away, he’s out. And you can understand why because he doesn’t have the core strength to kick the ball as well as the other 14 year olds who are quite strong and so he’s not going to do the team any favors. And it’s all gets very competitive but equally as thin thing on how low level do you play on? So to enjoy the sport well.
DEBRA: And not just the competitive side.
MAIRE: Absolutely but also not to be participating in something that you don’t enjoy.
DEBRA: Which he wouldn’t if he felt that he wasn’t performing at that level.
DEBRA: So that’s a difficult one. I know you talked about the things that he does with cycling, that’s an issue for him as well?
DEBRA: How do you try to help him with this?
MAIRE: He can’t cycle a regular bike. We’ve tried and tried and tried and he’s now, we got Battersea Park or Dulwich Park to use recumbent in London where they have a recumbent bike team. And he really loves that! It’s a brilliant hour to outrun the park. Everybody is riding a recumbent bike so he’s not sticking out like a sore of thumb which is was really nice. So, we’re all the same. So, it may be that we have to invest in a recumbent bike for him but again, he stick out like a sore of thumb when he’s cycling with regular people at home when we do a regular ride, he’s going to be the only one on a recumbent bike.
DEBRA: Can you explain for the benefit of everyone what’s a recumbent bike?
MAIRE: A recumbent bike is a bike which is literally almost on the ground. So it’s got
three wheels, as far as I remember, one at the front and two at the back like a trite but it’s very low down and you sit back into the seat of the bike and you steer with actually like a handle down on the lower level which you use like an armchair rest on each side to turn the bike right and left. But there’s no balance involved.
DEBRA: It was really about being low to the ground.
MAIRE: Absolutely. So, no balance because it’s a trike, there’s less balance and everything is on the ground but it’s great freedom because it does move quite quickly.
DEBRA: Could you not bling it up so it looks a bit cool?
MAIRE: You mean put platforms on?
DEBRA: I was thinking just put bit of bling in so it makes it look like something that is okay to have. Because when you say he would stick out, I’ve seen those bikes myself, and just think that’s a choice someone’s made. Do you think that’s maybe just him thinking that everything would think he’s different?
MAIRE: Yes, I think so but I think once he would get over that, he would be fine. And he would just learn to enjoy the bike for what it is.
DEBRA: What other things would you like him to be able to do, independence wise?
What would make your life easier and I suppose, build his confidence as well?
MAIRE: Possibly that he could get a Saturday job if he wishes. When he comes home from school on weekends when he’s that bit older when he’s in college. But if he could get something involved in football, I think that would make him interested and confident and feeling as though he was successful at something.
DEBRA: Would he want a job in football, would it involve playing football or would he be happy supporting?
MAIRE: Oh, he wants to be a commentator. So, if he can get the BBC to carry in the car he’d be dead happy! Was it going to happen or not, I don’t think so but something like that he just likes to… even though he has speech and language needs, he’s quite happy actually fondly enough to talk about football.
DEBRA: Okay. Because I can’t really comment on that with my voice but I think that’s also a lot of something he could possibly do.
DEBRA: It doesn’t sound like an impossible dream.
MAIRE: And because he’s doing a commentary that is a simple commentary, it might actually appeal to a lot of children like him who have the understanding that he has rather than a very complex commentary which is given normally on the radio or at the TV.
DEBRA: So other than that sort of thing, at home do you see him living independently?
MAIRE: I think he would need to be in an area where there is supervision. He has epilepsy so whether or not he would be able to achieve independent living, complete independent living, I think it’s difficult to know.
DEBRA: So that’s a sort of medical supervision.
MAIRE: Absolutely. He may forget to take his medication. It’s good for him to have companionship but it would be nice if he could live on his own.
DEBRA: Or is he started to develop some skills around cooking or anything like that or was he just…?
MAIRE: Yes, he’s beginning to cook and he is beginning to… he’s very aware of what’s important to eat and not to eat, against good or very good with doing that. But he knows what he should be having as part of his daily diet and what to steer away from. He knows exercise is really important. And he is very good at actually getting cleaning up after himself. He is very tidy again due to again boarding and I would emphasize how actually important the boarding is.
Every morning, he would make his bed, he will put his pajamas under his pillow, he put his laundry in the laundry basket, take his place up from the table, he will clear up if he has been doing cooking. He is very methodically like that.
DEBRA: So, it’s almost everything that he’s been told, isn’t he?
MAIRE: Absolutely, yes. And it’s amazing. I don’t think I could have done as good as job.
DEBRA: So, you think boarding has been the right thing for him?
MAIRE: Absolutely. Yes.
DEBRA: But do you think that for parents that are wondering, you’re saying boarding is the best option?
MAIRE: I think in his circumstance, it’s the best option because he doesn’t have a long trip to school and home everyday. He has got companionship in the evening which I think is really important. He’s got lots of activities which again is really important and he gets really good support, I would say, all of the time. And it’s very difficult as a parent for a full-time working parent to give that to all your children, 24/7. So at least, if he gets that in school, I can concentrate on whoever is left at home and then when he comes back at the weekend, I can give him more time.
DEBRA: So actually, it works for your family because you do have then time with his sister and it’s not easy for a sibling anyway?
DEBRA: Having a sibling with additional needs.
MAIRE: Exactly. Because they do get a lot of attention, a lot of the time, if not all the time. So you do have to give them a certain amount of attention and teach them that the reason you give the other child more attention is not because you love them more or you love them less. It’s because they actually need that support.
DEBRA: Has that come up in your family?
MAIRE: Yes, yes. Sure, comes up in a lot of families.
DEBRA: It comes up in ours. Certainly. Has there resentment?
MAIRE: Yes. Deep down, probably, it’s an awareness that there is somebody less well off than them and maybe it’s a bit of a guilt thing and they You don’t love me much as you love him but actually they know as they grow older, they know that that’s not the case but it’s just a child needs more support and we’ll need that ongoing.
DEBRA: Yes, so his sibling, as most siblings will have to accept that, I guess.
MAIRE: Absolutely and again, the sibling teaches how fortunate they are to have the talents and the strengths and the good help that they have and hopefully make them better people for that.
DEBRA: So, if I said to you, your tip for parents who were going through similar sorts of situations that you are, you got anything that you would think this is the thing that’s work for me or this is what I wish I’d done?
MAIRE: Boarding has definitely worked for me. Talking to lots of people to give you ideas for different things has definitely worked for me. And for nile, I would say getting the child involved in sport in early years is really important before they’re old enough to realize what confidence is. And even if they don’t continue with the sport when they’re in their teens, at least, they’ve had a good base as their introduction to a sport or to a dance or drama, whatever it is. Something to keep them engaged in for as long as it’s possible.
DEBRA: So, you’re saying that because he did it when he was younger, he’s now got interested in sports even if he doesn’t play it.
MAIRE: Absolutely. And if you don’t nourish that interest or introduce that interests to them and support it, it’s just very easy for that child not to have any interests.
DEBRA: Have you seen children like that?
MAIRE: Yes, I do see some of them, yes, I do from where we live here. So, I do think it’s important.
DEBRA: I don’t know about you but with teenagers they tend to spend a lot of time watching computer, things like that. Certainly, having an interest is helpful to push them out.
MAIRE: Exactly. Whether it’s even just go and watch a match as supposed to participate in it, I think that’s important. And it is a form of family timeout as well that you all go together and just do watching.
DEBRA: That’s a very good point, actually because it’s something you can all do together.
MAIRE: Absolutely. And it doesn’t involve a whole lot of effort so they shouldn’t find it too tiring. They’ll find it entertaining.
DEBRA: And I suppose if they don’t enjoy it, particularly if they’re there, it’s easy for them to go off but certainly to sort of step back and have a little bit of time for themselves. So, I think that’s sometimes what happens is they can get too overwhelmed, don’t they?
MAIRE: Yes, they do. They can just, like you said, sit back and enjoy or just take timeout.
DEBRA: All right, thank you very much, Maire for your time.
MAIRE: Thank you.
DEBRA: Key takeaway this week? Well, get your child involved in sport or other activities when they’re young because even when they feel they’re unable to participate in that sport or activity, hopefully they’ll have a lasting interest and I think that as Maire mentioned, it’s quite useful because they at least have something that they can do for themselves. It may be watching sport and they may then do that with the family. So, it’s a useful thing to do when they’re quite young.
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