1

An autism sister watching Atypical Season 2, Episode 2

I’m only going to talk about Casey (the sister) in this post. I want you to see her the way I see her.  I want you to see through her to all the sisters out there.

42877323_986385234880394_644448336547414016_nThe sister at home – Champion. She is the neurotypical child. She is the one that outed her mum. She is a good student, and a sought after athlete.

She is attuned with her surroundings and the needs of every member of her family. She blames herself when the marriage is put in jeopardy, when Sam finds out and tries to keep normalcy when Sam needs it the most. She takes on responsibilities no one has assigned her with. No one in her family expects her to be all these things, to think of all the implications and consequences. Her thoughts and needs take a back seat because she is the neurotypical, she is the one that has to be there while the parents sort out their own stuff. There’s no time for her emotional distress because she has to step up for every other member in their family. Plus, no one asked how she was dealing with her parent’s problems or in her new school – her champion mask is impenetrable.

The sister at old school – Shield: Everyone knows that you do not mess with Casey and Sam. Sam continues coping at school without Casey because of the foundations she has laid in previous years. It is expected that there will be repercussions when it comes to Sam, and no one wants to take that risk with her. I’m getting ahead of myself but in Episode 3, a fellow pupil accidentally does something to Sam and she says to him “Tell Casey I didn’t mean it”. Her shield mask is impactful.

The sister at new school – Timid. We haven’t seen this side of Casey yet. Mostly because she is so assertive in all her other roles. She is outside her comfort-zone. No one knows her as Sam’s sister here – they know her as an athlete, they will get to know her as Casey. It’s hard for her to readjust and define herself as her own person. She resorts to funny remarks and sarcasm almost every opportunity she gets while she is at the new school. Like I mentioned above, no one in her family has asked how her first few days at school have been – not on screen anyway. That’s not something that just hasn’t been addressed in the script, that’s how it really is in life.

On her first day she had a brought prepared lunch from home, on her second day she has to survive on peanuts and on the third day someone offers her a helping hand (whether it’s a good idea or not is irrelevant). She grabs it because she needs to be taken care of. Do you see how inspired this analogy is? It’s a representation of all the crap she has to deal with in the last few days narrated in food, the thing that sustains us.

Instead of crumbling she picks herself up and watches the penguin cam with her brother. She doesn’t even see herself as being in need of support or comfort. She deals and returns to what’s important. She doesn’t take the compliment from her dad calling her a ‘good kid’ because the things she does, and the support she offers comes is who she is. It’s not fake, it’s not something she has to think of; it’s not for a reward. She has to find her Casey mask.

*End*

As an autism sister, it’s was impossible for me to define myself or to get to know myself when i was growing up. Family break ups and autism drowned out my noise. I never had the chance to sit down and think “Right, this is what I want; this is what I like; this is what I don’t like”. My teenage years were me moulding myself to what I thought my family needed.

I moved away because I thought that’s what I needed to do so I could offer my brother the best future I could. I did law because I thought it would make me financially stable for my brother. I did an MA because I thought that’s what was expected of me. And my relationships and friendships? Well.

In the last two years, I have gotten to know myself . I spend more time with me, I know what films I like – not because my friends like them. I know what music I want to listen to – not because it’s popular. I know what books I like to read – not because they’re bestsellers. I used to drink beer because we were at a pub or eat beef because steak is  ‘the best’. I’d go out every time people had plans without any regard to what I wanted, I’d watch all the blockbusters, listen to all the hits and pretend that I didn’t have a care in the world because no one likes a downer.

Now I know that I don’t want to be a solicitor, I don’t like beef, I can tell people I disagree without the crippling fear that they won’t like me anymore. 12 years down the line, I bagged myself a blind date with me.

It’s hard for any teen to figure out who they are. Add a break up and autism in the mix and things get even worse.

When you look at Casey, or an autism family, look beyond the autism cloak. They are still humans, flawed, broken, tired, brave, and sometimes inspirational humans. When you watch Atypical, read between the scripted lines.

Casey is the single most inspiring female character I have watched in the last few years. I hope you see her through my eyes and that you let her teach you about autism, family and love.

After the trauma of the first episode, i’m ready to binge. I’ll let you know when i come up for air. 😊

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

Happy Birthday Hallee – Autistic Pride Day 2016

Today is Autistic Pride day. Last year I talked about different events happening and what you could do, today I want to talk about one; Hallee Sorenson.

In July last year, Hallee invited her classmates and other friends in the are to celebrate a big birthday – her 18th.

Not a single person showed up.

I’ve said before, for Chris’ 16th and 17th birthdays that he wasn’t going to get facebook posts wishing him happy birthday, he wouldn’t get texts,  go out and celebrate with his friends, ask for money to spend, he wouldn’t ask for expensive presents, or make a big show of opening presents. He is happy with his day-to-day life. But for his 18th I wanted to make it big, so that he would know that it was an important day. I’ve been so preoccupied with making #Project324 work, that I forgot what made me want this so bad.

It was summer last year, end of August and I was reading an article by an autism mum. She was talking about how her little boy was never invited to birthday parties. How he didn’t get play dates, and people didn’t even try. He was verbal and an athlete. Chris is neither verbal nor an athlete. So, I started thinking about Chris and how he has never been invited to a friend’s birthday party. Then I started thinking about who he would invite, and who would show up. Of course, I thought of all our lovely family and then…… no one. I got a chill down my spine, I thought I could never let that happen. No matter how much we accept that Chris’ life, wants and needs are different, his milestones are unique we are still shackled by our society’s norms; like birthdays.

birthday-appeal-trending-large_trans++Adw0VrjqLWSqJHfZ45Ae0UPhGu3d8eCxEbnX1CfWC0cHallee is funny, sweet, caring, smart, an athlete, a jigsaw puzzle champion, a wonderful student, and a best friend to all” but Hallee’s family won’t let autism be part of the way she is described to the world. Hallee is so much more than her diagnosis. Her cousin made it her mission to give Hallee a birthday to remember this year and asked people from around the world to send birthday messages to her home in Maine – Hallee received more than 10,000 cards, notes and gifts.
Why are we less willing to help people that we go to school with than people half way around the world? Why did #Project324 get so many responses and yet none of Hallee Sorenson‘s  classmates, who she sees every day, had the decency to show up to her 18th birthday?

I am sorry that our society failed you last year Hallee. I know that your story, your strength and beauty will make sure that children around the world will get treated with more love and understanding. Your family’s courage is a beacon for autism families all over the world worrying about their kids’ birthdays. I hope you are showered with gifts and cards and love on your 19th birthday and forever. I hope that this is a wake up call to your school and your community and that your message stays with them for years to come. Hallee’s auntie said: “This is all reaffirming that most people are kind and loving and that we all have the capacity for caring about others, even if they’re many miles away.” Maybe next year “most people” will be “all people“.

Hallee is Autistic Pride Day. Her smile, her milestones, her perseverance and her family’s strength and support are at the heart of what we are proud today.

Happy Birthday Hallee, you deserve a love so expansive it weaves constellations, so that you never forget who you are.

Send Hallee a birthday wish:

Hallee Sorenson
34 Wellesley Way
Bangor, ME 04401