0

21 and Atypical: A very Disney birthday

60007825_1102919996568611_2483072549760532480_nChristos celebrated his 21 birthday on Monday 6 May 2019 at the Disneyland Parks in Paris. He was spoiled for 4 days with mum running after him and buying him basically anything he wanted. We were a bit grumpy on one of the days due to headaches but looking around at all the families and all the crying kids I’m convinced that we didn’t stand out. There’s something in the air in Disney that makes every one (adult or not) have at least one tantrum.

Disneyland Paris is very accessible to people with different abilities. You get a special pass delivered to the hotel which means that you can skip queues and get special seats fit for your needs. Their maps have an accessibility guide which describes each ride (how loud, how many steps, how bright etc). Overall, the Disney experience is magical. He smiled a lot, cried a bit, pretended to cry a few times and on his birthday he let the restaurant sing him happy birthday and he blew out his candles.

I often wonder if he knows what a birthday is, if he gets excited. But birthdays are 59918925_406917366526247_477245289778905088_n (1)weird and, really, what is there to ‘know’? So, he waits for the song to finish, he blows out the candles and gets to eat cake after. Christos won’t get Facebook posts wishing him happy birthday, he won’t get texts, he won’t go out and celebrate with his friends, he won’t ask for money to spend, he won’t ask for expensive presents, he won’t make a big show of opening presents. The greatest gift we gave him on Monday was sticking to the programme we made.

I ask my mum if she thinks he knows I am his sister or whether he thinks I’m some girl who shows up a couple of days a year to annoy him. She said I’m crazy. But I have lived in a different country for 11 years and, yes, I know all the things I can say to myself to make it okay. Yet since Tuesday when he gave me a rushed kiss and flew back to Cyprus, I haven’t been able to stop being sad. When I’m with him I try to get into his routine and I try to do things for him but he doesn’t want me to – he wants mum to put his hat on, or to hold his hand, make his breakfast etc. And, I get it because mum, dad, yiayia and pappou are the people who are there for him every day. 10/10 times he needs something I am not there to help him and he knows it. It empties me – this feeling of wanting but not being there. You may think that living with autism is hard, but let me tell you that being away from it is just as painful.

Just like my mum, my family and friends will tell me I’m crazy and that he loves me. They will point out all the nuances that reaffirm that he knows who I am and for a couple of months, that will be enough for me to be okay. I’ll catch up with my thoughts to remember that he is happy and all the sadness and guilt I feel are completely selfish because I can’t add to his life right now. Maybe, later. I hope.

59746931_803068253409282_2241911501889732608_n18 years ago, when he got diagnosed we wondered if we would be able to handle it, if he would ever speak, if we would ever be able to communicate with him. We worried whether he would be able to do things for himself like tying shoe laces, eating, bathing. When he was five, we never would have imagined sitting down and having a conversation with him about what he wants, why he’s upset, how we can fix it.  We never thought he would handle school as well as he did, or socialise as well as he does. At 21 he still surprises us with his quick math, his photographic memory, his compassion, organisation and humour. That’s the Christos I want tell you about – my resilient, honest, brave, loyal cheeky and atypically typical brother.

So, I write this blog post instead of sending a card, I ask for pictures instead of Skyping and, every year, I try even harder to be better. I think of the years I was there and how I was a part of his smiles, his laughter, his crying, his bedtime rituals, his repetitiveness, his speech therapy, his tantrums, his education, his homework, his first steps, his first words, his transition, his moves, his development.  I dream of sharing the rest of my life with him, for our happily ever after, and want with all of my being for him to know that I will be there and that I am his sister.

Happy birthday Christos, I love you, thank you and respect you 💙

Advertisements
4

Hope in Poo

(One of) my New Year’s resolutions was to read more non-fiction books. I just finished a book about Pablo Escobar and now I’ve moved on to a nurse’s recollection of what it was like to be a nurse in the 50’s.

Both post-war Colombia and post-war Britain made the current politics scene more real than ever. People had just gone through a wars that left thousands dead, they lived in fear for years and in the end they thought it would never happen again.

IMG_5933And then these guys come along. In times like these it’s easy to give up and it’s easy to overlook hope.

So, I’m going to start a monthly hope write up. This month’s hope can be found in poo. That’s right, our world is so effed up that we can now find hope in poo.

On the 23rd January, a study was published in the Microbiome Journal (here) which claims that Microbiota Transfer Therapy (Fecal microbiota transplant (FMT), also known as a stool transplant, is the process of transplantation of fecal bacteria from a healthy individual into a recipient) alters gut ecosystem and improves gastrointestinal and autism symptoms. The investigation involved 14 days of therapy with oral vancomycin (an antibiotic used to treat a number of bacterial infections) followed by a 12- to 24-hour fast (clear liquids only) with a bowel cleanse using MoviPrep (laxatives). On day 16, to repopulate gut microbiota (the ecological community of commensal, symbiotic and pathogenic microorganisms that literally share our body space), a high initial dose of standardized human gut microbiota (SHGM) was given either orally or rectally for 2 days followed by daily, lower maintenance oral doses of SHGM coupled with a stomach-acid suppressant for 7 to 8 weeks. The stomach-acid suppressant was used to increase survival of SHGM through the stomach. The children were followed for an additional 8 weeks after treatment ended.

What?

Basically:  18 patients aged 7 to 17 years who had ASD and moderate to severe GI problems were given antibiotics for bacterial infection followed by laxatives for 14 days. Then, they were administered a high dose of a range of microorganisms for 2 days. Followed by a lower dose of said microorganisms and stomach-acid repressants for 7-8 weeks; which helps the microorganisms survive longer.

ASD-related symptoms improved, as reported by the Parent Global Impressions-III (PGI-III) assessment, which evaluates 17 ASD-related symptoms, showed significant improvement during treatment and no reversion 8 weeks after treatment ended.

One of the many theories about where autism comes from has been the gut. That’s why we use gluten-free and casein-free diets as an alternative treatment. In “Best Food Critic in Town” I mentioned: Marilyn Le Breton, who explains:

“When you eat, the food you consume is broken down in your stomach. The bits that are not used by the body are flushed out as waste matter. In autistic people, the breakdown of two proteins present in some foods, gluten and casein, is not completed properly. The resulting fragments of these proteins are called peptides. Peptides are small enough to pass through the wall of the gut, rather than being processed in the normal way. As the peptides journey around the body, they make a pit stop at the brain, where they do untold damage before continuing their journey and finally making their way out of the body, via urine. Both are very similar to morphine, a highly addictive drug.”

What this study proves, on a small scale, is that perhaps cleaning the gut of neurodiverse people from the bacteria that the body does not keep in neurotypical people could be the one of the answers we have been looking for.

Hope.

0

Sibling Week

There was a hashtag trending a few weeks ago celebrating Autism #SiblingWeek and I had messages asking me how i felt and how I coped as an Autism sibling.1456685_10152043682305030_1431061625_n

In my head, it’s unfair to blame the parents if a sibling is struggling to understand Autism – the parents have enough to deal with. And yes, they are important and they need to seek out ways to get professional help, or books, or alone time. They’re only human and they have their own emotions and their own process to go through; life just dealt them a wild card. I believe, the doctor that gives the diagnosis should also offer advice to parents about their siblings. I haven’t figured out the ins and outs of it yet; but shouldn’t it be a professionals job? They deal with this every day, they know the consequences, they know the shock that drowns out the reality you had been living in until that moment. Even more so, shouldn’t the school be aware of ways to help so they can be offrered?

Chris and I were born 8 years apart. Raising a child, in general, demands extraordinary things from parents, and the family as a whole. When one of them has Autism, those demands are the only thing you have time for. The time you invest in the well-being of that child, you know you will not regret when you see their progress. Siblings though, older or younger, remain silent bystanders. Their silence resonates in their misbehaving at school, in their picking up of bad habits and hanging out with questionable friends. The way the ‘Others’ are affected can take as many forms as can Autism.

416800_10150752443010030_1110641324_nI don’t know whether it’s harder when they are older – so the attention is shifted completely from them – or when they’re younger – so it’s all they know and might not get enough attention.  Your life has changed, the balance has shifted, your parents only talk about Autism, and you can only trace it back to one person. It causes resentment, whether you are old or young, the feeling is there. My mum told me that when Christos was born i used to climb into bed and drink milk from the bottle. I was 8 years old. I was at school. I had friends and I was drinking milk from a bottle and asking my mum to tuck me in; seriously. When he was diagnosed I started acting out at school, mum said – original. Thinking back on it now, its embarrassing, but that’s what happens to children.

As a result of no proper support system being put in place for the Others, there is tension that builds up between the needs of the child with Autism and those of the Others. I used to get annoyed when he played with my toys, when he watched my video tapes because he broke everything; absolutely everything. What i have found, in reading about this and listening to stories, is that there are many ways this frustration can manifest and without the right guidance it can get out of control. The obvious side note here being that where Autism isn’t dealt with early and effectively we get relationships that break down, or never even form to begin with.

In my experience, personally, as well as my discussions with other Others, the great majority has to deal with jealousy for the first couple of years but then there’s this power that comes in. Maybe its from reading, maybe its from witnessing how strong your parents are, maybe its from seeing how someone so small can be so fierce, how someone who cannot speak 419409_10150751639425030_721113893_ncan progress right in front of your eyes. I’m not sure what it is, or where it comes from, but it does and it makes you become who you are. You grow up, you cope, you become passionate, understanding, experienced; you just learn that life isn’t about coping, it’s about taking every day and making it worthwhile, it’s about excellence, because someone is doing that right there, in front of your eyes.

The bright side of being an Other is that we learn, whether alone or with help, to manage these demands and behaviours which makes our childhood/adulthood easier. It teaches us skills we wouldn’t otherwise have or learn at school. We become effective and resilient adults; because being an Other doesn’t end with childhood. It’s a bond we don’t have words for, it’s a relationship that matures and grows stronger over the years.

The concerns of toys and attention fade and as an adult we start thinking of the future and develop a sense of responsibility that makes it difficult for us to leave home and begin an independent life.

Missing home was isn’t an issue, but missing Chris is unbearable. I can text, whatsapp, call my parents, my friends, my family; but my brother I can’t. He doesn’t like the telephone, or talking on skype for too long and when we do he just tells me what he wants to eat. I consider myself lucky if I get the same few words out of him; always ‘Hello, I love you’ and when i ask how he is its usually followed by a kiss and him running away.

I can’t ask my brother how he is, can you imagine that?

It breaks my heart when they call and tell me he asks for me, and asks when he can see me. There’s this weight on my shoulders that I’ve put there that will not be lifted until i know i can give him everything he wants. He doesn’t ask for much, he just wants his music, his food and the pool; but its doesn’t matter, because if he wakes up one morning and asks for something, i want to be able to give it to him. No one expects this from me, and no one has ever spoken to me about the day I will be his carer but it’s something i have been preparing for since i was 17.

That’s the end-game, that’s the dream.

That’s what being an Other does to you, it drives you and it makes you better. So when you meet someone with Autism, take a moment to take it in, see beyond the Autism and realise that they are inspiring, they can motivate greatness without ever saying a word.

3

PS: Love?

Been watching ‘The Undateables’. For those of you who don’t know, the show it’s about people living with challenging conditions who are often considered ‘undateable’ – this series meets a few and follows their attempts to find love.

It’s a great show to see what dates would be like without the social expectations of ‘playing hard to get’, ‘saying the right thing’, ‘not being too keen’, rating people from 1-10. Dates are fun, they’re honest and the people on the show don’t play games. They are looking for love, companionship and happiness in it’s purest form. They’re not scared to say ‘i like you’, they’re not under pressure to look, sound or act perfect – they are real. The show aims to explore a side of dating that most people don’t even consider. When you see a person with Downs Syndrome, Tourettes, Autism, Aspergers etc the first thing you feel is pity, sympathy, maybe a bit uncomfortable because they are ‘different’. But who defines ‘different’ other than yourself?

Open up your world.

Everyone is looking for a companion – whether its a man, woman, friend, partner. We look for intimacy because love or affection at its purest is loving yourself first – which then enables you to love, care about another the way people are meant to be loved; completely. Without stereotypes, without social expectations, without games.

love‘Challenging conditions’ can mean anything. What makes a disability challenging, more than any other factor, is the way it is perceived. Autism is perceived as difficult, unsociable, untamable; and at its worst that is sadly the truth. But what makes it get to its worst is the way it it’s treated by society. Why do people with disabilities have to be boxed up and labelled ‘undateable’? Why do we have separate dating sites or agencies? Yes, its difficult, and if you don’t grow up with it or around it it can be daunting. But don’t you think that if education regarding disabilities and their challenges was available at school we would all be more accepting to dating or befriending the ‘undateables’? Or even better, wouldn’t it mean that people with disabilities would not find it challenging to find companionship?

When living with Autism, love is something that you never think your kid will miss; because you love them so unconditionally. But then you’re driving and he sees a girl walking down the street and he waves at her; it’s so unexpected, it’s so out of character. Mum and I laughed so loud when Chris did that one time. However, it reminds you that love – that feeling that we all need, seek, treasure – is in all of us. Whether we can express it or not, we want love in our lives. Everyone who has Autism in their life has thought about how their kid might never have that feeling, might never find someone to love, live with and have a family with. It hurts. It’s a feeling that you wouldn’t wish on anyone.

That’s why we raise awareness. Not for likes, not for views. We do it for the future, we do it for the chance to find love. Whether love comes in the form of acceptance or in the form of romance we seek it, we need it for our children.

Can you imagine your life without the possibility of love? Learn about Autism – love it.