Autistic, Dyspraxic and Microdeletion on a chromosome with Lorina

Paul Shriever:

Hi guys. My name is Paul. Today, we're going to be talking to Natalie, Michael and their daughter, Lorina, aged 18. Welcome guys. Is that right?

Natalie Gladin:

Yeah. That's right. Lorina.

Paul Shriever:

Lorina. All right. Great. Nice to meet you. Can you just tell us what Lorina's conditions are, please?

Natalie Gladin:

Getting the diagnosis was a really long drawn out process. First, we were given that she had dyspraxia, and then we got the autism test, and they said that she has got ASD. So she's on the spectrum. And then they did a genetic test, which showed that Lorina has micro deletion on a chromosome.

Paul Shriever:

Wow, what does that mean?

Natalie Gladin:

That's the chromosome that's based on learning. We don't understand, but they said to us, it's basically like you've got a chapter in a book, and you've got two pages stuck together, so that you're missing part of the story. We were told she was one of 20 in the world with that condition.

Lorina Gladin:

And I go to King's college every year, and I take part in a research to help them understand autism.

Natalie Gladin:

Yeah.

Lorina Gladin:

My sort of autism.

Natalie Gladin:

Well, any autism. It's a European study for autism that she takes part in.

Paul Shriever:

So you're really unique, Lorina.

Natalie Gladin:

She is unique. Yeah, definitely.

Paul Shriever:

Was it something that you was aware of as parents from a very early age?

Natalie Gladin:

We moved here 17 years ago, and Lorina's got a younger sister, Amber, who's only 13 months younger. So we went to baby clinic and Lorina kept tripping over when she was walking, and the health office just said, "That's not right. There's something amiss there." So, it basically took us from when she was 18 months old to when she was seven to get any kind of diagnosis.

Paul Shriever:

How did that impact Lorina's education?

Lorina Gladin:

I struggle with reading and like socialization.

Natalie Gladin:

She went to mainstream primary school, which was a struggle, because she wasn't understood. And we changed primary schools when we got the diagnosis, because we could then get the statement of education.

Paul Shriever:

Natalie, did you pick up on that very early on in Lorina's life? Was that something you picked up on that there was a condition, there was something not quite right. Is that something that you…

Natalie Gladin:

Yeah, when we were seeing doctors, we kept saying that we think she might have autism and they were saying, "No, no, no," because apparently, girls don't get it as much. I think it's more a case that girls are better at masking the behaviors.

Paul Shriever:

How was that Lorina? How was school?

Lorina Gladin:

It was hard because I didn't know how to explain myself. I struggle. I still struggle, but I've put my head down and I'm getting there.

Paul Shriever:

Are you aware of the hidden disability sunflower?

Natalie Gladin:

Yeah. Lorina has one.

Paul Shriever:

Is it something that you found helpful?

Natalie Gladin:

It can be. Awareness is getting better, but before, people used to just think you were wearing a pretty lanyard. And I think in that respect, COVID has played a part in making people more aware of the Sunflower lanyard, because we've had some, when she was younger, some really horrific experiences in the supermarket. By the time you get to the end of the first aisle, the brain's gone fried and she just starts kicking off, and people look at you like, "Can't you control your child? There's something wrong with her."

Lorina Gladin:

I do-

Natalie Gladin:

I always used to say, "I want to get one of those T-shirts that says, please don't judge. My daughter's autistic," because she'd get the words wrong, and she'd stand at the top of the island. She'd scream, "All you do is abuse me. Daddy comes home from work and abuses me," and you're in the supermarket and you've got everybody looking at you and you're thinking, "Oh my God, please just swallow me. Just swallow me whole."

Lorina Gladin:

I do have triggers don’t I?

Natalie Gladin:

Yeah. You'd get to the end of the first isle, you've got four more to go, and you're thinking, "Oh please. I'm just embarrassed now."

Paul Shriever:

Do you think it's something that you've adapted and got better with, with time?

Natalie Gladin:

Yeah. We have coping strategies. We go shopping early in the morning so we don't meet too many people.

Lorina Gladin:

I don't like big crowds.

Natalie Gladin:

You don't like crowds, do you?

Lorina Gladin:

No. I don't-

Natalie Gladin:

You don't like loud noises.

Paul Shriever:

Has it created or generated tensions or challenges in your family?

Natalie Gladin:

It does. We've got better over the years. We do still argue about it, but we've got better over the years, but it does because Lorina will do something and because she's not quite severely autistic, because you look at Lorina, she looks normal. And most of the time, with the masking and acts normal, but there were certain times when she would do something, and you're saying, "No, that's wrong," but in her mind, it's right. And you're trying to get through to her. And it can cause a lot of tension in the house. Her sister is only 13 months younger than her. And then we've got Violet who's seven years younger [crosstalk 00:05:40]. It does create a lot of tensions, especially when Lorina's struggling to read, and her youngest sister is eclipsing her.

Paul Shriever:

Yeah. How'd you get on with your sisters, Lorina?

Lorina Gladin:

I get along with some, okay with them sometimes. Well-

Natalie Gladin:

Not all the time. It's very much like siblings. You'd think all having to close together would be lovely to get on. No, they don't. When she was younger, the traits would come out as quite violent. So we had lots of hitting, and punching, and biting, and it did create a lot of issues in the house, because how do we stop her? And Super nanny with a naughty step didn't work, because after an hour of trying to get Lorina to sit on the naughty step, I gave up, because she couldn't comprehend why she was there, because in her head, she didn't see what she'd done wrong.

Paul Shriever:

Natalie, can I ask, do you work? Do you have to support Lorina? How does that work?

Natalie Gladin:

I don't work. I'm at home all the time. Lorina goes to college two days a week. So now she's older, it's not so bad. But when she was younger, I couldn't go to work, because whenever I tried to leave the house, it'd be a freak out. So I haven't worked for 18 years now.

Paul Shriever:

Do you think Lorina, Natalie, will be able to live on her own? How do you see the future?

Natalie Gladin:

Lorina doesn't want to live on her own, do you?

Lorina Gladin:

No.

Natalie Gladin:

We've said that we will build a granny annex for Lorina to have a self-contained place here, but she understands herself but she doesn't feel that she can. She doesn't want to do the assisted living. So she doesn't want to live somewhere with people she doesn't know. And even though she'd be independent, she doesn't want that. She likes to have familiarity.

Lorina Gladin:

Right. If I was to move in with a partner or something, I'll be okay with.

Natalie Gladin:

Yeah.

Lorina Gladin:

But I wouldn't want to like go to support and live in, and have load of people I don't know. And a warden that I don't know.

Natalie Gladin:

We at envisage living, we've all been here for quite a while.

Lorina Gladin:

Quite a while.

Natalie Gladin:

But then I think, well then, I've got someone to look after me in my retirement.

Paul Shriever:

Yeah.

Lorina Gladin:

Okay.

Paul Shriever:

Lorina listen, I've read that you are quite an active young lady-

Lorina Gladin:

Yes.

Paul Shriever:

And not long ago you started skiing.

Lorina Gladin:

So, I got into skiing because my younger sister, Amber, was into skiing.

Natalie Gladin:

She started skiing because we were always at ski hills with Amber. And we said, "Well, we're here. Why don't you try it? So we went to Ipswich to learn to ski, didn't we? And she moved up the levels there. Then we were at a race one day, a normal Eastern region ski race, and one of the officials there, he does the Special Olympic skiing in Norfolk. And he said, "Why don't you try this?"

Lorina Gladin:

And it's helped me, the Special Olympics. I have so many friends all over the country. I went to Switzerland last year for the nationals.

Paul Shriever:

Amazing.

Lorina Gladin:

I've got 18 medals all together.

Natalie Gladin:

There's a lot of them.

Lorina Gladin:

Yeah.

Paul Shriever:

That's amazing, Lorina. Well done.

Lorina Gladin:

I have friends in Scotland. What I'm basically on the phone too.

Natalie Gladin:

These are your ones from Switzerland, aren't they? That's your gold, your bronze, and your other gold.

Lorina Gladin:

And then this is my bib.

Natalie Gladin:

And then her special bib that she got to keep. Yeah.

Paul Shriever:

That is absolutely fantastic, and something to be really proud of. Well done.

Natalie Gladin:

Yeah. But again, COVID put a halt to all of the competitions for the past. Since we came back from Switzerland last February, we haven't seen anyone.

Paul Shriever:

So what's next for Lorina in terms of skiing then? What's the next step?

Natalie Gladin:

We're back to training this weekend with Special Olympics in Brentwood. There'll be another nationals, they're held every two years. So the next one will be next year, hopefully, COVID-dependent. Then, apply for the next World Games and hopefully go there, because the boost in their confidence that Lorina's got from competing, and winning, you know it's-

Lorina Gladin:

I'm meeting friends.

Natalie Gladin:

And meeting people. We've met people from all over the country, and she's always on their face time with Instagram, Snapchat, with everybody from all over the country. It's like the Sunflower scheme. It's one of those that... The sunflower scheme is gaining popularity, but it's really hard to get it out there to people originally. I mean, because it started back at Gatwick and I remember seeing it when it started there, and it's only been the past couple of years that it's really taken off since the supermarkets got on board.

Paul Shriever:

If there was one reaction that the Sunflower that you got from wearing a sunflower, what would that be?

Natalie Gladin:

Patience and time, and caring,

Paul Shriever:

Can I just ask you how autism and dyspraxia is generally perceived?

Natalie Gladin:

Dyspraxia, I don't think people understand. People, I think they hear the, "Dys," and they think dyslexia. For us, when we were given that diagnosis, it was what is it? It's the fine and gross motor coordination. And people don't understand that. As far as the autism, I think people look at Lorina because she presents as a normal person. They're like well, no, you can't have autism. I don't think people actually understand there's any in-between. I think people think that you've either got that, Asperger's, where you're really talented at drawing or maths, or you're a non-verbal. There's not much done about the in-between.

Paul Shriever:

What do you think of the awareness days? So for example, World Autism Awareness Day, is that something that's important to you?

Natalie Gladin:

I think we've got the Autism Awareness Day, but I don't think there's actually much awareness goes on that day. I think it's a day, and people have lost what awareness means. And I don't think that on the Autism Awareness Day, there's much said about autism.

Paul Shriever:

I think also it's not just about one day. It's about the fact that you're living with it 365 days of the year.

Natalie Gladin:

Yeah. And it does, it affects every aspect of your life. It effects everyone in the household. I know. And we all have to make adjustments to how we behave, what we can do.

Paul Shriever:

What do you think of the Sunflower stories?

Natalie Gladin:

I thought they were really good. We watched them, and my husband watched them and he said, "You should keep in contact with these people," you know, "Get the stories out there, you know?" And that's the thing. We tried desperately to promote Special Olympics and get more people interested, because people don't know, but yeah, the Sunflower stories have helped raise awareness of the sunflower. Just because you look normal, doesn't mean that there isn't something wrong, and that you're not going through struggles. Because as I said to you before, unless you look like you're physically disabled, or have got some kind of impairment, people think you are normal. We all want to be normal, but normal is-

Lorina Gladin:

I don't want to be normal.

Natalie Gladin:

No. We don't want to be normal. Everyone wants to be perceived as being normal, but there is no normal.

Paul Shriever:

Thanks ever so much Natalie and Lorina for joining us today, it's been an absolute pleasure to meet you.