Tourette Syndrome and Brazilian Jui Jitsu with Khovan Hussein

Tourette Syndrome and Brazilian Jui Jitsu with Khovan Hussein

“With my Tourette's, sometimes my verbal tics can be stuff like swearing, or I might say something that's offensive, but obviously I can't help it. So when I wear the badge outside, it makes me comfortable knowing that... It just shows everyone that I can't help it.”

Khovan and his mum Shireen join us to celebrate Khovan’s achievement in being awarded with The Rotary Young Citizen Sporting Hero Award. Khovan is autistic, has Tourette Syndrome as well as ADHD.

As a child he struggled with communication and social interaction, but since joining a Brazilian Jui Jitsu club it has been the key to his communication skills and participation, providing him with a sense of community, development and growth.

Khovan explains how the martial art answers his sensory needs and how he is committed to raising money for charities, and supporting other young people and their parents through his Tik Tok account @KhovanH where he posts videos and answers questions.

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Tourettes Action

Khovan’s Instagram @Khovanhn

Khovan and his sisters Just Giving page for Tourette’s Action - Move for Tourette’s (ends 15th June) 

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

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Transcript

Chantal Boyle:
Welcome to the Sunflower Conversations I'm Chantel. And today I have the pleasure of speaking with Khovan and his mum Shireen, who joined us today to talk about how Brazilian Jiu-Jitsu has given Khovan the key to communication, participation, a sense of community, development and growth. He was recently awarded the Rotary Young Citizen Sporting Hero award. Here on after I'm going to refer to Brazilian Jiu-Jitsu as either a martial art or BJJ because I find it very difficult to say the full words, the title correctly. Shireen, thanks for joining us today and also, Khovan. Shireen, would you mind by starting off telling me what are Khovan's health conditions please?

Shireen Hussein:
Of course, so since Khovan was a young child, he's had high blood pressure and something called borderline left ventricular hypertrophy. He also has other conditions, so he's autistic, and he was diagnosed with autism when he was two, he has ADHD which he was diagnosed with when he was six. And more recently, he was diagnosed with Tourette's syndrome.

Chantal Boyle:
Thank you. And until Khovan discovered his martial art, what were his communication and social skills like?

Shireen Hussein:
So even though Khovan has been verbal for many years, I was unable to communicate with him. I couldn't have a conversation with him. He couldn't verbalize his wants or needs, which obviously then built up a lot of frustration in Khovan, to the point of having meltdowns, which isn't to be mistaken for a tantrum. Obviously a meltdown is when someone's so overwhelmed, they just cannot physically carry on. As for social skills, he had very, very little understanding of day-to-day social skills, so that was a massive challenge. For example, at nighttime, he'd be up all night and playing because that's something he enjoyed without understanding that me and his sister might need to sleep. And it was just very challenging taking him out to places with the lack of social skills he had at the time. So it was it... He did find day-to-day living extremely difficult before BJJ.

Chantal Boyle:
It does sound very challenging indeed. Khovan, what type of martial art is BJJ?

Khovan Hussein:
BJJ stands for Brazilian Jiu-Jitsu. It is a grappling based martial art, which basically means there's no punching or kicking or any sort of striking. It's just wrestling and it's mainly focused on the ground.

Chantal Boyle:
And what do you enjoy about it?

Khovan Hussein:
I find it very fun. I love wrestling. It's very good for my cardio. I enjoy competing and it meets my sensory needs.

Chantal Boyle:
I was interested to hear how your BJJ answers your sensory needs.

Khovan Hussein:
Well since being young I’ve needed a lot of sensory feedback because of my autism and my main need was movement. Big movements. So when I was little I would run around a lot, I would jump over furniture. Sometimes I would run in to walls and run outside, run into mum. And sometimes I think even when I was six I would run up to mum and tell her to hug me as hard as I can. And it’s just like that pressure I guess keeps me calm or is just something I need. And Brazilian Jui Jitsu it’s wrestling so there is a lot of squeezing and throwing, and big fast movements so it’s perfect.

Chantal Boyle:
So you must feel amazing after a session then. And you do Brazilian Ju Jistu as well don’t you, do you grapple with each other?

Shireen Hussein:
Yes yes. I think he’s one strip higher than me in rank.

Chantal Boyle:
So Shireen, why was Khovan awarded with the Rotary Young Citizen Sporting Hero Award?

Shireen Hussein:
So then there are a number of reasons he was awarded it. One of them being how he has managed to improve his own quality of life through sports. So going from this boy and teenager who, like I just said, found it almost impossible to communicate with people, struggled to access things in the community and just needed help with everything, to the young man he is today. And not only has he improved himself and his own confidence and communication, he then decided to use what he's learned to help other people who faced similar challenges, to help them improve in confidence through sport. And on top of that, every year he does a solo fitness challenge to raise money for different charities, and he raises a few hundred pounds each time he does it. So he won the award basically for improving his own life and other lives through sports.

Chantal Boyle:
Well he's remarkable because clearly Khovan's communication and articulation skills are brilliant now. So for you as mum, you must be so pleased and so proud.

Shireen Hussein:
Absolutely. I still can't get into words at how proud I am because when he was younger, although I always had hopes and belief in him like every mother does, I was so worried about his future. And I never expected this award that he was going to get nominated, nevermind, achieved such an award. And what makes me most proud is that he's not just doing this for himself, but he's so eager to help others become better versions of themselves and that's what makes me most proud as a mum.

Chantal Boyle:
It just goes to show that there is a path for everybody, and it might not be academia, it might not be music. It could be sport and Khovan is really embodying that. And it's lovely to hear that he's been raising money for charity as well. How do you go about choosing the charities to raise money for, Shireen, do you help him with that?

Shireen Hussein:
The first one was a bit random. There'd been a big explosion in Lebanon, and we'd seen it on the news, and Khovan was very empathetic towards the people living there, worried about where they were going to live and how they were going to get money to eat. And so I had a little chat saying, well we can help somehow. And we discussed it and he decided he was going to run for as long as his legs could take him and keep [inaudible 00:08:12], and he got to almost 11 miles doing laps around our cul-de-sac.

Chantal Boyle:
Oh my gosh, that's incredible.

Shireen Hussein:
So he raised a few hundred pound there. And then he decided after that, the year later we said, well, I'll do something again this year. And he did the Teenage Cancer Trust press up challenge, so it was 3,000 press ups in a month.

Chantal Boyle:
3,000!?

Shireen Hussein:
He started 10 days late as well, so he only had 20 days to do them. So he did that. And then he's just currently halfway through Move for Tourettes because they've got a movement sport based campaign going on at the minute. So him and his sister have to do a bit of exercise every day, because exercise is a passion. He can still help people through a passion and something he enjoys.

Chantal Boyle:
Yeah, it's the perfect marriage, isn't it?

Shireen Hussein:
Yeah.

Chantal Boyle:
You are listening to The Sunflower Conversations, to share your story and find out more information details are in the show notes.

Khovan, I didn't ask you, if you don't mind, how old are you?

Khovan Hussein:
18.

Chantal Boyle:
18. So, yeah, Khovan is a young man. So can you tell me, I know that you wear the Sunflower, can you tell me why you wear it?

Khovan Hussein:
It makes me feel comfortable outside. If I ever get into a situation with my Tourette's or my autism, like for example, with my Tourette's, sometimes my verbal tics can be stuff like swearing, or I might say something that's offensive, but obviously I can't help it. So when I wear the badge outside, it makes me comfortable knowing that... It just shows everyone that I can't help it. With my autism, maybe I'm at a shopping till, and the person at the tills talking to me and the badge shows that I might need a bit more time to process the information they're giving me.

Chantal Boyle:
That's fantastic. That's so good. Shireen, what difference is wearing the sunflower made to Khovan when he goes out, like for you as a mum?

Shireen Hussein:
You know, it is a tiny little token, isn't it? But it's made a huge difference. Khovan is accompanied by an adult whenever he goes outside, but not directly on top of him doing everything for him. He is given the independence. And one big thing I like about it is in the past before the Sunflower lanyard, I would have to stop people in the shop. Sorry, could you slow down speaking, he can't process this, or I'm sorry, he's swearing he doesn't mean to. And I felt that was taking away a little bit of independence, someone having to constantly say things. Having that Sunflower lanyard, I feel gives him greater independence because now I don't have to stand there saying, oh please, he doesn't mean this. That Sunflower lanyard is a big visual and it stands out for everyone to know this person has a hidden disability and whatever the badge says is on it for his condition.

Shireen Hussein:
And I also love how much confidence he's got with it because he was afraid and anxious outside to speak to people, worried of judgment. And when he does wear it, I think it gives him a layer of protection that, hang on a minute, if I am struggling, this is very widely recognized, this sunflower lanyard. People aren't going to judge me and he's had some great success with them. When I stood outside Home Bargains the other day, he [inaudible 00:11:55] things, grabbed a drink and he couldn't find the water, so he was really confident and asked someone who worked there for where the water is. And he said to me, I was saying a word and then I had to tic, saying a word, had to tic. And I said, how was the shop assistant? And he said, oh, he was really, really patient with me. And I think that's probably because of the lanyard, without it sometimes you can look at maybe he's angry if he's swearing, or it could appear that he's drunk with the movement sometimes, which he isn't. So that lanyard just makes me relax as a parent.

Chantal Boyle:
His confidence is the word that's really coming through to me. Hearing how you've both explained the reaction that you get from other people, it's amazing really, isn't it? How a tiny little symbol can really transform an experience as simple as purchasing a drink. That's really pleasing to hear that's what it's doing for you both as a family and it's helping Khovan to go out and just not be judged. No one wants to be judged, do they?

Shireen Hussein:
No. You don't feel judged when you wearing it, do you? He feels, I think, a bit of empowerment over his own conditions.

Chantal Boyle:
You are at college at the moment, Khovan, may I ask what you're studying?

Khovan Hussein:
I go to a specialist school for autistic people, age 5 to 25. And the curriculums mainly based on life skills, such as cooking, travel training, gaining more independence, going out into the community a lot. I also do speech therapy, occupational therapy and music therapy.

Chantal Boyle:
That sounds like a fantastic school. And you're enjoying it?

Khovan Hussein:
Yeah, I love it there.

Chantal Boyle:
And I understand that you have the opportunity to do your level two gym instructor course. Are you looking forward to that?

Khovan Hussein:
Yeah. I'm still waiting for it to be arranged with college. I'm not sure if it's happened or not yet, but I'm excited for it.

Chantal Boyle:
So this will give you the opportunity to continue to maintain your fitness, which will be superb for your martial art.

Khovan Hussein:
Yeah.

Chantal Boyle:
And to interact with people, to help them on their fitness journey as well, so again, supporting other people.

Khovan Hussein:
Yeah.

Chantal Boyle:
So you are obviously a very giving person. That's what I'm detecting anyway. And I hear that you've created a TikTok channel, may you tell me why you've done that?

Khovan Hussein:
I'm very passionate about getting other people into fitness or sports, no matter what their ability is. I've also done it to share with other people what it's like to have autism, ADHD and Tourette's as an adult, along with sharing what it was like when I was a kid to maybe help other parents with their children who have autism, Tourette's or ADHD who've been newly diagnosed from that.

Chantal Boyle:
What's the feedback been like? Have many people got in touch with you?

Khovan Hussein:
Yeah.

Shireen Hussein:
I help him with the channels. So I'll help him record things or sometimes wording things. They're all his own ideas, what he does, and I'll help with the editing because he's very busy with his BJJ and his college and everything else. And he's only had it a month, and he's up to about four and half thousand followers.

Chantal Boyle:
My goodness me. That's brilliant.

Shireen Hussein:
One of his videos has 710,000 views on it, and that was only posted out about two weeks ago. But there's lots of parents... I see lots of comments from their parents saying, thank you, you've given me hope for my child in the future, because it is very difficult when you have that young child who can't communicate and it's difficult to go out and you've not got an older child... Like I've got two with autism. So my younger child is autistic, it's easier for me to have hope for her than I did when Khovan was little. So for the parents, they've been giving great feedback. It's been brilliant. They're always asking questions, must remind them that he's not a doctor after everything.

Chantal Boyle:
Yeah. I'm 18 years old, be easy with me.

Shireen Hussein:
Yeah and there's been some autistic adults comments saying, thank you for doing this because I've never been brave enough to talk about autism or ADHD. And you've given me the confidence now to be more myself and make videos about it. So I think they're very, very beautiful, the comments that he's received.

Chantal Boyle:
Well, let's tell everybody what your TikTok channel is called and we get you a few more subscribers. What's it called, Khovan? How can people find you?

Khovan Hussein:
I think it's Khovan H.

Shireen Hussein:
Yeah, so it's just @KhovanH. It's nice to see your children succeed. There’s nothing better.

Chantal Boyle:
I've got children and I totally hear you. I totally hear you. So Shireen, what advice would you give to anyone who may be experiencing challenges, finding their path due to their disabilities?

Shireen Hussein:

First thing I would say is, well advise, was to try build some confidence which is easier said than done. But if you find what you love doing at home, that could be art, that could be gaming, that could be Pokemon cards. Google a local club, there's lots of clubs out there for all kinds these days. And I know it takes a lot of effort to go and attend a club sometimes, so you can take someone familiar with you. And even if you only make it to the door that time, just keep trying to increase your confidence by finding a group of people who have similar needs to yourself or similar likes, similar passions.

Shireen Hussein:
And you'll find very quickly, once you get involved with people who have similar interests, your confidence does start to grow. And I think a lot of things, once you do have that little bit of confidence, it really does help build you up and help you be able to access more things then, because I know we all get nervous and anxious sometimes, but having autistic children, I can see that anxiety is sometimes magnified for them. So I do recommend starting with things you really, really enjoy doing at home. There's a group for everything these days. Absolutely everything, so it won't be difficult to find something.

Shireen Hussein:
And for parents as well, who may have children with disabilities, I know when Khovan was little, I was really worried of taking him out. And my biggest worry was judgment from other parents. Was he going to run off? And it did restrict a lot of things we did and looking back, I just wish I hadn't cared what other people thought, if that makes sense. And I think this is where the Sunflower comes in. There wasn't a sunflower when Khovan was a little child, there is now for my daughter thankfully. But if you're a parent of a disabled child and you really want them to get involved with things because it does really help increase their confidence.

Shireen Hussein:
Try not to worry what other people think. Have a word with the place you're going before you go there, just explain my child has this condition and may act like this. You'll find a lot of places to actually be very understanding. And also celebrating the successes, if I used to try and take Khovan somewhere when he was little and we didn't make it through the door, I'd call myself a failure. Oh, we haven't done this. Whereas, nowadays I have a different mindset. If we make it to the door, I celebrate, oh, well done. Look, we actually got here. We got to a new place. That's amazing. And believe it in your children like that and giving them that understanding and just making them feel like everything they do is really, really good, that helps increase their own confidence too. So it's just basically a case of, I say basically, it's not basic [inaudible 00:20:18], trying to build confidence and believing in yourself and having a lot of belief in your children.

Chantal Boyle:
I think that's just perfect advice. And when you say it's basic in a sense, it is basic, but I think we are inherently hard on ourselves and then we kind of inadvertently push it on to our children, don't we?

Shireen Hussein:
Yes.

Chantal Boyle:
And everything that you have just said, I'm thinking, God, I wish I could be a mum of young children again, to switch things around and be more patient and be kinder really, and kinder to yourself as a mum and celebrating successes. I think perfect advice. Really, really good. And I'm sure that many people listening to this will really value your experiences and your knowledge.

Shireen Hussein:
Thank you.

Chantal Boyle:
I know that it's been a long day for Khovan, he's been at college all day and then he's come home to record this podcast with us. So I'm not going to keep you for too much longer. I just wanted to ask what was the name of the Tourette's charity that you have fundraised for, so that we can share it with people?

Khovan Hussein:
Tourettes Action.

Chantal Boyle:
Tourettes Action. Thank you. So I'll include that in the show notes as well.

Shireen Hussein:
Sorry, he has a just giving page for Tourettes Action, him and his sister.

Chantal Boyle:
Oh, okay. We'll put it on the show notes so people can find it.

Shireen Hussein:
I'll drop an email with that if you want.

Chantal Boyle:
A link, please. Yes, please. Yes, that would be great.

Shireen Hussein:
Well, thank you.

Chantal Boyle:
And Khovan thank you so much. It's lovely to see you and good luck with your fundraising and I hope you get to do your level two gym instructor and keep on climbing up the ranks in your Brazilian Jiu-Jitsu.

Khovan Hussein:
Thanks.

Chantal Boyle:
Keep in touch and let us know how things are going.

Shireen Hussein:
He's got his eyes on the world champions once he gets his black belt. And I know he will do it because I know the determination he's got. He's found that passion and he believes in himself and he doesn't let anyone or anything get in the way when he wants to achieve something. So you'll see him there one day with his big world medal.

Chantal Boyle:
Well, I'm looking forward to that day. So good luck.

Speaker 3:
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