0

21 and Atypical: Dancing with the Stars (aka Sisters)

Christina is Stephanos’ older sister and she shared this story with me earlier this week.

53423695_926770284324454_1836469629984178176_nWhen I was around 15 and Steph was 14 we used to listen to this song “I will survive” by  Gloria Gaynor and we used to just dance to it“. Christina is a year older than Stephanos and has loved dancing since forever. So , she decided to make up a choreography to the song and include Stephanos! Her many choreography stunts included lifting her little brother which she finds hilarious now as he is much bigger and taller than her.  They rehearsed it and danced to that song all the while sealing their sibling bond and creating memories that would last forever and would end up being shared on this blog, with you! As they got older and Christina moved to the UK for her studies their dance faded into their childhood. Christina remembers “after approximately 5 years, we were just sitting around with my mom and Steph listening to the radio when the song popped up! I looked over at him and said ‘Steph it’s our song!’ For a moment he looked at me like he was trying to process which song it was but when I stood up and positioned myself he immediately stood up as well and walked to the exact position he had to, to start off our choreography. I was so amazed by his memory. We started dancing to it again and of course half way through I forgot it but he remembered it all.” 

483721_10151540249360030_589832536_nFunnily enough, when I went home recently we were watching old home movies and going through old pictures and found videos of me and Christos dancing in our flat in our pyjamas. We would listen to same song repeatedly, switching off all the lights and run around with flashlights.

Growing up with a younger sibling with autism we couldn’t help but wonder if we can handle it, if they would ever speak, if we would ever be able to communicate with them. At first we were afraid, we were petrified and kept thinking we could never live with this diagnosis by our side. But, we survived. We look back at those years now thinking how we spent oh-so many nights just feeling sorry for ourselves, crying because we thought we’d crumble. Yet, we survived. We more than survived. We were pushed, inspired, lifted and moulded by them. We are us because of them.

As sisters we were tied to this dance even before we were born. But, and I’m sure Christina will agree, if we had a choice, 20ish years later and knowing all the things we know now, we would always choose to spend all our lifetimes dancing with Christos and Stephanos.

Read about more amazing sisters I have met through this blog here.

Advertisements
0

21 and Atypical: Popping to the shops

In 2018 Sainsbury’s launched a new trial to help enhance the shopping experience for customers with hidden disabilities. The trial enables customers with hidden disabilities to collect a lanyard which indicates to colleagues that extra support is needed. The scheme helps those with hidden disabilities, such as autism, dementia, visual or hearing impairment by alerting staff that extra support may be needed while shopping. Lanyards are available to collect for free and are for each customer to keep so they can wear it every time they come into store! Not all Sainsbury’s stores have implemented the initiative yet. Sainsbury’s is the first supermarket to test the initiative, following Gatwick Airport’s successful launch and, by using the same sunflower lanyards as Gatwick and Heathrow Airport, Sainsbury’s sets an example for other retailers to follow.

In Shopping with Autism I described how, before Christos started school and was able to communicate with us better through PECS, going shopping with him was a nightmare. It was like walking into a living breathing nightmare. It was loud, it was cold, it was too much. His sensory sensitivity was off the roof. He cried, he was on the floors, he was red, his clothes would come off, he was screaming and there was nothing we could do to console him. We would return home traumatised after every trip – and there were a lot of trips. A couple of years later, we could stop the screaming, by getting him chocolate and crisps. Then came the years where we would go in and didn’t need to literally drag him across the floor to the till. My mum stopped apologising to everyone. When he got a bit older, we would make a list, he’d know where everything was and there was no crying, he would organise the shelves. If something in aisle 4 was supposed to be in aisle 12, he knew and he would fix it. Now? It’s one of his favourite errands. You can tell him what you want, he’ll tell you what he wants, you’ll try and offer a compromise, you’ll lose and everyone goes home happy. 9 times out of 10, Christos will jump at the chance to go to the shop; big or small it doesn’t matter! He will pick everything and stand over my mum and shout and order her around until everything is unpacked and stored back home. Now, he has the skills to shop for himself. This growth, this maturity and his development is a testament to my parents’ unwavering will to prepare him for the trial and tribulations of every day life.

52164969_243733996510468_3477239904054804480_n

Stephanos is not interested nor does he get involved in the shopping aspect of daily life.  He knows and trusts his family to provide him with food stuffs, he is adaptable in brand names and is happy with to have his small juice, ice cream or chocolate and let everyone else deal with the hassle of a supermarket. He doesn’t go to the shops and will not get involved unless he is asked to by his family. When he is asked, he kindly obliges and goes back to his snacks. Whereas, Christos will make you do it all his way. Stephanos’ shopping routine took roots when he, his dad and brother took him to the supermarket with and got him a juice, a chocolate or an ice cream. This simple action, possible done to distract from a tantrum, triggered a routine which he follows when he does participate in a shopping trip. The brands of juice, chocolate or ice cream are not always the same  but he always picks out the three items mentioned above. But, just like his pal, his early encounters with big markets, the sounds, smells, people, intrusion of private space would trigger him when he was younger. At 12 years old, Stephanos had a huge meltdown in a shop in the UK. His mum remembers it as a huge episode including self-injury and the worst she had had to deal with up until that time. Even though the family don’t usually take him to big markets so as to spare him the angst, when he does join he is much better equipped to deal with a mood, or someone clearing their throat. While he may get a bit upset and start stimming, overall he is happy with his treats. I mean, I order everything online just so I can avoid these places, why should our boys feel any different?

The reason we collate and write about these stories is to give you an insight into autism daily life. It’s not always easy but it’s not always difficult either! These boys have gone from kicking and screaming to young adults who know how to help their parents, how to negotiate and take a step back when it all becomes too overwhelming. Christos and Stephanos’ stories are being told so that next time, when you see a parent desperately trying to get their child off the floor, or a kid making sure all the water bottles are facing the same way you may see a bit more than what’s on the surface. You may see the need to help make this world more autism-friendly and you may remember that milestones are different for all of us. You might remember these stories and realise how this was a millionstone for both of them.

My brother is a controlling shopper and Stephanos would just let him get on with it.  When you see them and spend time with them you always get the impression that the boys have a full understanding of each other and respect each other’s character, boundaries and behaviours.

#21andatypical

0

Christos’ dental journey

I recently got a message from Christos’ dentist, Ioanna, to tell me about his most recent visit and the progress he has made. I also wrote about one of his visits in 2015 – Back to the Dentist. I asked Ioanna if she would be willing to contribute to this blog and here is the result.

My first encounter with autism was 15 years ago when Christos was referred to me by his family dentist. He was the first child on the autism spectrum I had in my private practice as a young pediatric dentist. I knew nothing – as I realised later – about autism, but Christos inspired me to get involved and learn as much as I could.

And that’s how I was introduced to the world of autism. I am so lucky to have had the best guides! Unique Christos and his special family!

He was only 4 1/2 years old when I met him. His dental problems, the behavioral restrictions due to his young age and the difficulties due to autism made it easy to choose a full dental treatment under general anesthesia. The first goal was achieved. Our next goals – and most difficult ones! – were helping Christos brush and have good oral health as well as gaining his trust and cooperation for the frequent dental visits over the upcoming years.


Dental treatment doesn’t differentiate between people on the autism spectrum and other patients. Rather we have to be aware of behaviour management and accommodate the needs of the patient. This is a real challenge! Sensory disorders make it even more difficult. What I’ve learned, in the last 15 years, is that I have to be armed with patience, understanding, persistence, flexibility, creativity and love when I work with people on the autism spectrum…and with people in general!

In the beginning, I used to see Christos every 2-3 months. This was to help him become familiar with the dental office and, of course, with myself. I could see how hard it was for him to adjust and take in all those new things; smells, lights, doors, drawers!!!!  I must admit, it was hard for me too. I had to interpret his behaviour and the only reason I managed to do it was because of the great help of his parents. I felt them to be some kind of translation between me and my patient!

It took Christos 3 visits to finally sit on the dental chair and open his mouth. I tried to teach him and his parents how to brush. His mum and dad were so brave to fight that battle at home! (I think Dora described it once in one of her articles – Thinking about the things you don’t think about: b) Attack of the Toothbrush). You can see why brushing can be a real struggle for people on the autism spectrum! After that we managed to put some fluoride varnish – that’s one with the strange taste! – on his teeth! 2 1/2 years later we managed to do the fissure sealants on his newly erupted first permanent teeth! That meant that he would have to sit for a significantly longer period of time with his mouth open, tasting too many strange things with odd tastes and feeling all the weird textures. But we made it!

A moment I won’t forget is when I got a phone call from Christos’ dad one weekend. He was so happy and proud that Christos said my name while showing his moving tooth!!! This was Christos’ way of explaining that something was going on with his tooth and it was his dentist’s job to take care of it. It was another milestone in his personal progress and I was so excited and happy for him!

Another memory I have is of how anxious I was when we decided to extract two teeth to make space for the new ones. We needed to make sure the teeth settled and were arranged well as it wouldn’t be possible for Christos to have braces. I had to give him local anesthesia with an injection. However, once again Christos surprised me. He acted like it wasn’t a big deal at all! His parents and I were so relieved and so proud of him!

Step by step, Christos knew he had to accept and follow my rules; but I also had to follow his! I couldn’t break some of his routines. I had to accept and try to understand many strange (to me) behaviors and obsessiveness, especially at the start. For example, he wanted to drink water immediately after the fluoride application and throw the plastic cup in the dustbin. During every appointment I would try to convince him not to do that and …guess what? We made it last time!!! After 15 years!!! What did Christos teach me? Never give up on my goals! Keep trying!

His last visit also came with some very interesting parts. Christos took on the role of a role model for another special boy! The boy who had the appointment before Christos came back into the room when he saw him entering my office. I asked for Christos’ permission first but he didn’t look bothered by this other new person in the room. From Christos, this is a permission! If he didn’t want someone there, he would make it very clear! At the end of our appointment, I asked Christos’ mum if we could take a photo to send it to his sister with his progress. To my surprise, she had already done it!!! Not only that, but after the appointment I also got a warm sms from Christos’ dad! The people around him are so sharing, so loving and so alert.


A couple of years ago, I was part of an internet conversation with colleagues from other parts of the world to share useful experiences and knowledge about autism and dental treatment. I got a message from one of them saying “You don’t want autistic patients!” His words shocked me. I thought about my long journey and realised how valuable it was for my career, my personality, my view about people and life to meet Christos.

One of the interesting parts of my job – and it’s one of them that I love! – is that I can follow the changes in the life of my young patients and their families. It’s amazing! I had the chance to see Christos growing, starting to talk, improving his communication skills, being happy after his trips to meet his sister, being a teenager with a big change in his behaviour and becoming an adult. His family shared some of their worries, some of their endless efforts to give support to their hero, some of their philosophy about life with me.

Christos gave me the first piece of the autism puzzle and it is a precious one! I want to really thank him for it!

Thank you Ioanna for your words. But mostly, thank you for your patience, kindness and love over the time my family has known you. I can only say that I hope you are a role model to your colleagues in the same way that you are an inspiration to those around you.

PS: The green thing Christo is holding in the photo is a mirror so he can watch exactly what Ioanna is doing. Did someone say control-freak? 

1

Atypical:

Just binge-watched the much anticipated Netflix Original series ‘Atypical‘. The series follows Sam, who is on the Autism Spectrum, on his journey to finding love.

Even though its sold as a comedy, the show made me ugly-cry a lot more than it made me laugh out loud. The show presented many big and small moments that I have experienced first hand. The autistic lead is sincere and very well portrayed. You can see the extensive research that went into developing the ‘Sam’ character and he delivers quite well, in my opinion. Obviously, not everyone on the spectrum is like Sam, but I think this series is more about the family rather than the lead.

I can’t think of anything I disliked about the show, although you’ll hear a lot of self-proclaimed experts throwing shade at every opportunity. To them I say, appreciate the effort of incorporating an autism story into something as mainstream as Netflix. To you I say, watch it. Remember, not every person on the spectrum is like Sam, but this is a good starting point.

What was the inspiration for the story?
Robia Rashid says: “After working in network TV for a while, I just wanted to do something for myself. I was very aware that more people were being diagnosed with autism, and it was interesting to me that a whole generation of kids were growing up knowing that they were on the spectrum and wanting independence. That point of view seemed so interesting to me — and such a cool way to tell a dating story. You’ve seen the story of somebody looking for independence and looking for love before, but not from that specific point of view. I really was drawn to that. I was a little annoyed because it sounded really hard! I had to do a lot of research. A turning point was when I figured out that I wanted to use Sam’s voice-over. But it was both helpful and harder because it made the project much harder to write.”

Your son has the same desire to be loved that we all do.” This was the sentence in the trailer that made me want to watch Atypical. (I write about love here a lot)

I saw a lot of myself and my family in the Atypical family. The mum’s passion, making her life all about autism for so long that she forgot to live her own. The dad’s sweet disposition, feeling a disconnect to his son but making silent gestures to show his everlasting dedication to his family.

And of course, the sister. Sam’s sister spoke to me more in what she left unsaid. Watching the show as an autism sister I saw in her all the thoughts I have had in the last 19 years. I have so much in common with her and her family life. Not the obvious, as I am anything but a track star. Her triumphs are overlooked, her life is dependant on her brother’s and her future hangs in the balance. Sam says his sister never lets him get beat up as she instinctively steps in front of him when someone asks what’s wrong with him. Yet throughout the series she playfully punches him, hits him, climbs over him and jokes about his quirks. Casey (the sister) is so well written as a character she made me cry every time she was on screen.

Casey’s success is overshadowed because her family is preoccupied with Sam. When she meets up with them, she doesn’t hold a grudge. When her big news is obscured by what will happen to Sam, it’s her boyfriend who makes a scene about it to the parents. Casey knows Sam is paramount, she knows because she wants him to be. She struggles with deciding whether to ‘move on’ and do what’s best for her or to stay and help Sam through the hard times coming in the household. I lived this struggle. She is fearless when its comes to her brother and telling people to back off. She is his.

I can’t wait for season 2 of Atypical and I know it will be just as touching as the first. Well done Netflix. Well done to Robia Rashid for taking this on and doing it so well.

0

5 questions about autism and how to ask them

There’s no such thing as a stupid question‘. I mean sure, when you are in education. But we all know there is such a thing, and we experience it every day. For example, when your tummy is rumbling and someone asks if you’re hungry. Or when you hit your knee/toe and someone asks if it hurts. Or ‘Would a fly without wings be called a walk?’. No.

One of the great things about awareness is that it gives you the knowledge to transform a stupid question into a meaningful enquiry. So, here are 5 stupid questions I’ve been asked about autism and how you can turn them into meaningful enquiries.

  1. Have you tried disciplining him?
    • Apologies stranger, I can’t hear you over my child writhing in sensory pain and screaming bloody murder in the middle of this busy supermarket parking lot.
    • Think: How will taking away his favourite toy, switching off his favourite music or making him stare at the wall for 20 minutes cure his sensory sensitivity? Discipline is taught when children are naughty. For example, when I was a child and I was disciplined by my parents because I’d done something they had expressly told me not to. Being overwhelmed by sound, smell, colour and touch is not something people with sensory overload can control. Christos wasn’t reacting to an instruction or a restriction with his tantrum. He was reacting to physical pain. You can’t discipline him for that just like I can’t discipline you for asking that question.
    • Meaningful Enquiry: What’s bothering him/her?
  2. Maybe he’s just hungry/thirsty?
    • Thanks.
    • Think: Every parent is paranoid about their child’s nutrition. With autism and sensory overload you have the additional hurdle of them not eating everything and their heightened sense of taste. The second post I wrote for this blog was about Christos’ food – Best Food Critic in Town – and the Gluten-Free diet. My dad spent hours developing new recipes which incorporated all the vital nutrition he needed and adding it to the 5 things he agreed to eat (egg and lemon soup, pasta with tomato sauce, curry, chocolate cake and halloumi). It got to a point where our mum and dad’s food was so delicious, he wouldn’t eat at a restaurant. We took food with us; hell, we tool grated halloumi with us. He’s obviously a lot better now, he eats salmon, cremes, chicken, fish curries. I think the weirdest thing he doesn’t eat is potatoes. But hey, I don’t eat beef so I guess we’re both weird. When they are young PECS is a massive help in terms of communication and hunger. I definitely recommend implementing it at home, but also having a travel version for trips to the restaurant or market.
    • Meaningful Enquiry:  Can I get them something they like?
  3. Autism? Does that mean he’s really good at maths?
    • Maybe.
    • Think: No two people on the spectrum are the same. Chris is good at math, but he’s also really good at other things. He has great memory, an amazing sense of direction and he can cook. Stereotyping people on the spectrum and not realising that, just like all of us, they can be unique in their abilities is one of the biggest downfalls of understanding autism and befriending someone on the spectrum.
    • Meaningful Enquiry: What does he/she like to do?
  4. Does he/she understand? 
    • Do you?
    • Think: Yes, they understand. It takes time, alternative therapies, PECS, speech therapy, studying, learning, testing, preparing etc but yes, they understand. Just because someone doesn’t speak your language doesn’t mean they have nothing to say. That’s what autism is, a different language. All we have to do is understand it. There are so many unanswered questions, facts, about autism that we have yet to come to grips with.
    • Meaningful Enquiry: How can I tell them [something]?
  5. What’s wrong with him?
    • The short answer is: That question. That is what’s wrong.
    • Read: Autism has been in the limelight over the last few years. Just a Google search of the word and you get articles, organisations, news items etc. The basic information is there. I have so much admiration and respect for all the parents (including my own) who raised extr-aut-inary humans without this information so readily available to them.

For those of you who are willing to go the extra mile, I will be starting the Autism Awareness Diploma with Online Academies which is currently on Groupon for £19. Netflix is also streaming a new series in August called ‘Atypical’.

Learn, read, educate yourselves. Read/watch the sad stories, the happy ones, the scientific ones. Each one has something to teach you.

3

Thinking about the things you don’t think about: b) Attack of the Toothbrush

So, I can write a lot about this because I went through it myself. You see, my dad (sorry daddy, I love you) has a real thing about brushing teeth. He sits there and stares at you while you brush, and if you don’t do it right he makes you do it again until you do it right. Who knew there was a right and wrong way? My dad does; not gonna lie, there were tears involved. He times you and asks you 3+ times a day if you’ve brushed your teeth. Even without Autism in our house, this would still be a daily thing. He just wants us to be at our healthiest all the time, but man it was a mission.

I had ‘okay’ teeth when I was little, personally I blame my nan for having a cake shop and the heaps of icing, sugar just low enough for me to reach. What was I supposed to do? Not cover myself in sugar and chocolate? Insanity. Anyway, I got my ‘adult teeth’ and they were pretty good, and then came the dentists. Dear Lord the dentists, they still give me nightmares. My dad can never come in with us at the dentist; he starts crying and it’s a whole ordeal. But everyone’s happy after it’s done… except me.

The reason I’m writing this is for you to imagine this PLUS Autism.

I mean it’s pretty rough having your teeth fall out when you have the ability to understand why; imagine not knowing. You wake up in the middle of the night because one of them fell out and you call your mum; imagine if you can’t. Your dad takes five minutes brushing your teeth and you don’t understand why. When he was younger and we had to do it for him it was a battle. There were tears, there were tantrums, there were fights, toothpaste everywhere. He hated it, we’d have to hold his head, have him sit on our laps, chase him around the house with the toothbrush. Unfortunately, he had really bad teeth as a result of his complete refusal to brush more than a few seconds. He had to have extensive repairs and even surgery. Again, tears, tantrums, he would not, under any circumstances let the dentist touch him. He would not sit still for any of it. I mean how could he with that light shining in his face, someone’s fingers in his mouth, the taste of gloves, the sound of the suction, the tools, the pain and us holding him down; again, this PLUS sensory sensitivity. It was unbearable to know he is in such pain, but it was for his own good, we insisted and persisted and now he doesn’t mind it as much. He had his operation and it was dreadful, we all fainted, we all cried, it was the kind of aftermath you would expect from a family like ours.

Once he started speech therapy and we started incorporating pictures and words in it things got better (Making routine flexible.) It was part of his routine now to brush his teeth, and he understood that he had to photodo it; he didn’t like it though. He had this cheekiness about the whole thing, he would try and wash off all the toothpaste off the toothbrush, he would pretend it was too hurtful, he would pretend to cry while he brushed, or try to kiss you or wipe the toothpaste on you. Like all things, he needed a time limit – my dad sitting there staring was incentive enough for me, but it wasn’t enough for Chris; so we started counting. It was 10 seconds on each side, up down, front teeth and tongue. I giggle when I remember saying to Chris when he got older “Time to brush your teeth” the sheer horror in his eyes, like it was “Come on time to torture you”. It’s so funny to remember the bathroom fights we used to have because he would do it too fast, or my dad would count Mississippily slow to get that extra second in, so Chris would get frustrated. When he learned how to count he would do it himself, no man on earth could count as fast as him while brushing his teeth. All the numbers mashed up into one. As you may have guessed, we had to have him start over again, and again, and again.

But, like in most cases, our persistence paid off. Brushing teeth has now become something he reminds us of. He doesn’t go to bed at night without brushing his teeth, by himself, for a whole minute. He even uses an electric toothbrush now – took some getting used to.

This, of course, takes a load off my dad because he now doesn’t have to sit there and stare or count; he just listens through the door and gives us a look when we do it wrong. It was all for a worthy cause though, we both have a healthy straight set of gnashers and didn’t need braces; all thanks to that wonderful man sitting there, staring at us while we brush.

2

Thinking about the things you don’t think about: a) The Sock Wars

I’ve been talking to parents of non-autistic kids and it suddenly made me really aware of how differently we see every day things. Like getting dressed for school, putting on socks/shoes, brushing teeth, fixing up hair, shaving, haircuts etc. This is going to be about the things you do while thinking of your day, your plan, a conversation. This is going to be about the things you do automatically, the small compromises you make when your shoes are a bit uncomfortable, the haircut you get while you chat away to your stylist, the minute amount of effort you put in washing your face in the morning. I want to make people aware of how different our lives are, why our worries may seem unusual. I want to let other parents know that they’re not alone.

The first post will be on socks.

Chris loves walking around barefoot, to the point where half of my dads day would be spent on running after him to put his socks back on or to wear shoes. He would wear them and then take them off almost immediately, run to us and give us hugs and kisses, just in case we got mad. There were shoes, slippers, socks everywhere. In an ironic twist of events now he wears shoes, slippers, flip flops around the house all the time. It used to take about half an hour to an hour getting him ready for school in the morning. The hour usually came as a result of what i remember as the ‘sock wars’. photo (1)

Following on from the sensory sensitivity posts, socks were our biggest struggle. Somehow, even though he can dress himself and do everything by himself, socks were the only thing he would not put on; we had to do it. They need to be put on perfectly, if not you start again. If you touch the wrong spot, or accidentally stroke his ankle, toe at any point you have to start again. If you tickle him or give him an inadvertent ‘Lets go’ pat, you start again. If you don’t start at the right end, if both sides aren’t moving up at the same pace, if its too high or too low, you start again, you start again, you start again. No loose ends, no marks, no holes otherwise you start again. Even if its not visible, is it a new pair? Are you sure they’re a pair? Start again, just in case. Then come the shoes. Something’s not right; is it the shoes or the socks? Take everything off and start again.

It’s quite funny thinking about it now, mostly because I haven’t been part of that ritual for years, but I cannot describe the stress that develops from putting on socks. Bottom line was if he’s uncomfortable everything has to start again. There was no compromise, no slight adjustment and just go along with it. If it happened during the day, at the school, the supermarket they’d come off.

Sensory sensitivity can be a real time consumer. I’d say don’t get frustrated about it but that would make me a hypocrite. Me and my dad would just give up after the tenth time. My only advice is keep at it, you’ll get it right at some point. It’s not their fault, and it sure isn’t your fault. You know how sometimes your socks might be inside out, or might not match? That doesn’t happen in our house. Even if we wore sock the wrong way, he would make us take the off and put them on the right way.

Five paragraphs on putting your socks on – how many lines would it take you?