My daughter Eva has Rett Syndrome; a rare neurological disorder that in her case, left her locked in a body that would not work for her from the age of 9 months. I went from being a photographer to being a mum to being a rudimentary therapist, advocate and ranter. This blog is here to share ideas, thoughts, therapies, recipes, advice and sometimes have a rant. or two.


Wednesday, June 27, 2012

Stuff and Nonsense


A month ago in Brisbane, Australia I attended my first ever Rett Syndrome Family Conference. It was the first time I'd attended any Rett-related conference and I came away with so much information and such respect for the families who have been on this Rett-ride for decades.
It was at this conference that I heard a fantastic sentence used by Professor John Christodoulou (from the Westmead Children's Hospital, Sydney) as a way to describe what happens with the MECP2 genetic mutation that is responsible for Rett syndrome. Imagine a normal gene expression of the MECP2 gene as being a sentence like: 
The red dog sat and the fox ran.
It makes perfect sense and works as a sentence.

In Rett syndrome using the sentence as a base structure, the different mutations of the MECP2 gene can be described thus:

The red dog rat and the fox ran.  
This is a Missense mutation where just a small letter changes but it changes the meaning of the sentence.
The red dog San dth efo xra.
This is a Frameshift deletion where all the letters are there but in the wrong places.
The red dog and the fox ran.
This one is an In Frame Deletion and you can see that one whole word is missing and changes the meaning of the sentence.
The red dog sat.
This is a Nonsense mutation where the end of the sentence is completely missing.

Eva's MECP2 gene is a Nonsense mutation, called R255x, and it makes complete SENSE to me that she has something called a Nonsense mutation. In fact if I just look at that word it sums up the way her personality has dealt with this whole Rett thing and it makes me chuckle. This is a girl who blows raspberries at serious doctors, particularly the kind who are condescending. This is the girl who is allergic to peanuts but not almonds, anaphylactic to salmon but not tuna and allergic to sesame but not chia seeds. R255x is a mutation that is regarded as one of the most severe in Rett syndrome yet Eva has thus far been fairly healthy, been vocalising a lot and not gotten seizures. She is confounding the phenotype (physical presentation) for her genotype (gene mutation). 
She is full of nonsense and laughter and childish giggles. She is complex and confounding and in response to difficult situations either falls asleep or crosses her legs and peers over her glasses. She is an enigma. I can't wait until they find that magic drug that will complete her sentence. Until then, maybe we should get her a red dog (a red cattle dog for sure) to sit patiently at the end of her bed waiting for her to wake up and play one day. 

Sunday, June 24, 2012

Sharing the blog around

And the love.. I just received a lovely gift in the form of the One Lovely Blog award which was passed on by one of my favourite blogs Living with Rett Syndrome. There are a few rules for accepting the award..




One: Thank the person who gave you the award. 
Thank you Catriona! Without wanting to be too gushy, it was your blog that made me feel normal and understood at a time I was embarking on a crazy new journey as we discovered Eva had Rett syndrome. Your blog became the voice of the feelings I was having on the other side of the world and your wit and honesty made it so real and readable week after week. I never get tired of hearing about Amy and your life with her. It's incredible to think two little girls continents apart have mummys that rant about similar things. It's just that for the last two years I've been ranting in my brain and to my partner and friends. Now random strangers get to hear my ranting as well via this blog. Oh joy! So thank you for passing it to me Catriona and I'm glad you find it worth reading. 


Two: Share seven things about yourself. 
Not too difficult since I haven't been blogging long:
1. I temper my love of researching (Oh good morning, Science Daily!) with a dose of trashy books, movies and internet (mmm cup of tea and JustJared). 
2. I obsess over fonts. It's crushing to find a good website that has a font I dislike. I couldn't look at Linda Burkhart's site for weeks just because of the font. It's lucky this blog design only had 7 fonts to choose from or else I'd still be obsessing. This one is Georgia. Not perfect, but hey.
3. I am a very proud member of the Cloud Appreciation Society
4. I did a degree in Japanese and Spanish because I wanted to spend my life travelling. I told my parents I would become a translator or teacher. I became a photographer instead.
5. I love to daydream and end up thinking of crazy inventions that often turn out to have been invented or become invented at a later date. Of note: The Portable Penis (for the travelling woman who never wants to sit down - the Japanese got that one done); Solar-powered Bitumen and Paint (so you can make the most of the sun on your street, house, shed or car - some brainy scientists are onto that one) and my latest that I've yet to find: Clear Gumboots (so you can see your socks or feet as you jump in puddles) and Solar-powered Coasters to keep coffee warm in winter or beer cool in summer. If only there was a universal repository for ideas and you could get paid when they got made... now there's an idea.
6. I can recite all the words to two movies my sisters and I watched incessantly as children: Ferris Bueller's Day Off and I Wanna Hold Your Hand. Most people know Ferris but the 1978 Robert Zemeckis film I Wanna Hold Your Hand is just as hilarious but in a 1960's comedy-musical-romance kinda way.
7. Facebook freaks me out. I once joined but deleted it within weeks. Yes deleleted not deactivated. I'm bugged by the thought that I am missing out on loads of fun by not rejoining but as yet am not convinced...


Three: Pass the award onto other bloggers. 
This bit is hard for me.. I have read about three blogs exclusively for a few years and have only recently ventured out past my science daily/justjared fix to find more. Weird I know. It's a bit like my facebook thing - if I ignore it it might go away. But it hasn't so I'm finding new blogs from other people's blog lists. Here goes mine and I hope you like some of them too. In no particular order..


101 Cookbooks - I started reading this when I realised I would have to cook differently for my highly allergic child. Heidi's recipes, photos and words make me want to cook better.
The Sartorialist - As a visual person this website is pure voyeuristic fashion delight.
Life on Nanchang Lu - This is my sister's blog that she began when she moved from Australia to China three years ago. It has been so much fun to read about the food, language and travel shenanigans she gets up to. And she is a darn good photographer and writer.
Suri's Burn Book - It's funny. That's all.
(Notes on) Politics, Theory & Photography - Here's where I satisfy my longing to be smarter and a more aware photographer and human. 
Wiring the Brain - Current brain research news. Zing!
Inspired By Love - This blog is written by a young woman with Rett syndrome and was the first blog I read that made me realise that Rett syndrome can try to steal my daughter's body but not her mind if she learns how to communicate. 
The Selby - It's just great naked photography (as in not tricked up stuff) with amazing subjects. A nice change from overly styled interiors you see in commercial magazines.
More Design Please - Another opportunity to see great photography and imagine a life filled with tasteful furnishings, pretty lunches and the kind of artsy craftiness that I long for but rarely achieve.
And these blogs written by my friends who follow their passions for fashion Steele My Style, prose The Late Night Gripe, food Walter O Food and illustration Jo Woolley.


All the other blogs I love and read regularly are blogs written by parents who have a daughter with Rett syndrome and have been mentioned already on Catriona and Kori's blogs. Happy reading!



Thursday, June 21, 2012

Just go for it!

Eva at Conductive Education during song time
Says Eva's teacher at Conductive Education. She is such a fantastic teacher and I will try to paint a picture of her: she has an endearing accent that is Hungarian in origin and she speaks in turn quickly then slowly, sometimes missing a word, sometimes inadvertently making all the parents giggle as she naively says something quite rude and doesn't realise it. She loves all our kids with such genuine affection and has the most infectious laugh. She has brought a voice out of Eva and so many of the children in her class. She is sometimes stern when they cry ("Come on, you are too old for crying, you are just rolling over ok!") but so ready to praise them for the tiniest of effort (which has usually taken a huuuuge amount of effort for the child). The kids love her! 
And today, when I asked her how she thought Eva would go in a mainstream school she said "Just go for it Emma. Eva will need lots of support but you make sure you tell them how much she can do, not just what she can't. Give them time to find her personality, give them all the information they need about Rett and remember they are just human too. If you have a bad experience, move school, try again. It is not the end of the world."
She teaches me as much as she teaches Eva; I need to relax a bit. I have been seeing schools and freaking out at how inaccessible they are for a child in a wheelchair - stairs absolutely everywhere - floor after floor of them - and few ramps if any. Often not even a lift. Uneven playgrounds, swimming pools with no hoist, toilets with no change facilities or hoist. The Principals themselves look freaked out when they hear about Eva and they say she might be better to go to such and such school (naming any number of schools away from them!). That she may not have enough aide time to support her learning, that she will be on her own for great parts of the day. That she may not be able to participate easily if she doesn't get a teacher and aide that are willing to learn about how she communicates. And so the list goes on and my heart races and my brain writes unsent letters to the government pleading for real inclusion and less discrimination for those with severe physical limitations. And my heart aches for Eva to just have an easy life and access to everything. And another day goes by. It is not the end of the world.

Wednesday, June 20, 2012

Those bloody goalposts

Our goalposts just keep on shifting. It's like they are underwater goalposts and swimming towards them only serves to make them seem further away as they shift with the sands.
Four years ago: I imagined Eva would go to a Steiner school if she was like my husband, or regular school if she was like me. I imagined going back to work as a photographer and building up my business and travelling a lot. I imagined we would have more children.
Three years ago: I imagined Eva would walk any day now, would start babbling again. I started yoga after a long hiatus and couldn't even sit without getting a pain up my back but I imagined getting stronger. I imagined starting work again soon. I learnt to breathe slowly and loudly through my nose to calm both Eva and myself during her long periods of crying.
Two years ago: I still imagined Eva would walk but maybe in a another year and would definitely start talking or figure out how to use a communication device without much instruction. I worried about her lack of weight-gain, her scoliosis and whether she would develop seizures. I wondered whether she would have to go to a special school. I started not being able to imagine going back to work and started intermittent meditating.
One year ago: I imagined Eva would be able to walk with a walking frame within a year and get around without assistance. I imagined she would get a communication device that would work for her easily. As she started Conductive Education kindy I imagined a new version of school for her: one with lots of love and support for her needs but with a regular curriculum. She started gaining weight and her scoliosis didn't progress. I started to be able to touch my toes easily and sit for long periods without pain. I started singing in kirtan. I read some books on grief and way more books on figuring out what I wanted to do with my life. I could not seem to think about picking up a camera for work again. I became sure there would be a cure for Rett syndrome in the next five years.
Now: We are waiting to trial a walker. It seems to take a long time for anything to happen but then again what's the rush, Eva is not walking and requires lots of assistance to take steps. I can't imagine her walking unaided for some time if ever. We are slowly progressing with the talking stick but have been warned that any communication system may take up to four years to implement. One step forward, one step back. Good body days, bad body days.  But she is vocalising a lot more and makes whole words in correct situations sometimes. I can't imagine her speaking whole sentences just yet.. but maybe one day when/if there is a cure. The likelihood of a cure seems a little further away than I had hoped and may not be a cure but a drug to alleviate some of the symptoms. She has maintained her weight and we have averted having to get a g-tube. We are not out of the woods yet regarding seizures but her scoliosis has remained the same curve. Yoga has become a moving meditation but has brought challenges. The more I know, the less I know. On my own good body days my brain stops thinking too much about life outside of the class and I have peace for an hour. I still have no idea what to do with my career but have loads of ideas and a little more patience. Schooling is our main focus for Eva and yet we have no idea where she will go or how it will work given her physical limitations. The schools we visit so far have classrooms up stairs, have few or no ramps and are staffed by teachers with little experience if any in as complex a case as Eva. We are always swimming towards those goal posts, head not always above water, but breathing.

Monday, June 18, 2012

Food as Medicine

Food as medicine has been a long term love for me. I love to cook and I love to research so when I found a book on my parents bookshelf many years ago called "The Natural Health Book" by Dorothy Hall it was like an "ah-ha" moment. It incorporated both of my favourite topics in great depth and as a teenager, was like nothing I'd ever read before: Add lemon juice to spinach to increase iron absorption, eat bananas and avocado for a good balance of happy hormones, eat nutrient-dense food and not too much of it and you should remain pretty darn healthy. I still have my mother's copy and reference it frequently ("what would Dorothy Hall do?") to find all kind of things for both us and Eva, as diverse as what foods contain phosphorous to what food you can eat to help with energy or constipation or anxiety. But then things like having a child and working got in the way and suddenly I found myself eating packet pasta (gasp!), packet biscuits (gaspier!) and vegetables that had probably arrived at the supermarket weeks earlier only to sit in nitrous gassy stasis before I brought them home where they sat not ripening, not decaying just stasis-ing in my fridge. It was weird and definitely not as nature intended.
Then we got introduced to Sally Fallon's "Nourishing Traditions" by our friends and what a shake-up it was. Learning about diverse cultures and how they use food as medicine, the saturated fat conspiracy and loads of recipes made it a fascinating and useful read. Then came the Gut and Psychology Syndrome book, many late nights researching various food topics and then finding the world of food bloggers. My favourite quickly became Heidi Swanson's 101 Cookbooks. I loved the way she wrote and photographed her dishes, the food she made and the fascinating vegan dishes that I would use as inspiration for Eva - our little meat-eating vegan! Then there is Jude Blereau's "Wholefood for Children" cookbook that I've mentioned here before that took the journey we were on and made it into food we could cook easily for all of us on a daily basis. Then I found "Smart Medicine for a Healthier Child" - an A-Z of childhood illnesses that provides both a medical and natural approach. All of these things used to be a bit unusual. Now they are the norm and it's wonderful. While I've had my head in the Rett-clouds for the last few years the world around me has wholeheartedly embraced this whole food as medicine thing. I've got a new friend (who I've never met in person) who lives on the other side of Australia and emails me recipes and advice for Eva as her own daughter with Rett syndrome is 8 years old and has never had a cold! Amazing. There is this great groundswell of people creating their own food adventures in pickling, fermenting, growing, baking and feasting that I can now be a part of and learn from.
And despite this being about something I love it's also because Eva doesn't just get sick, she well and truly gets the whole kit and kaboodle and makes it into something big. She's not a child who can carry a cold and still frolic her heart out. Eva sleeps twice as much, is morose, snotty, chesty and if we play our cards wrong by ignoring the early stages she gets a fever, nasty cough and then ends up on antibiotics. Which then kills her good gut bacteria which leads to a whole host of problems like gut pain, indigestion, reflux and crying. Lots of pain and crying. When she really needs medicine (the drug kind) I have no qualms in giving it to her. Of course. But I've been lazy at the start of a cold the last few times which ends in a trip to the doctor instead of beginning with a trip to the organic markets. I'm working on changing that so that we can spend more time having fun and less time recovering from boring old colds. Just like Dorothy would have done I'm sure.
So when Eva started coming down with a cold last week I didn't head to the doctor for pills, I made her a big pot of chicken congee and then when her cough kicked in I made a pot of vegie and herb soup with lashings of garlic, ginger and lemon zest. For bedtime I made a chest rub with crushed fresh thyme, olive oil, eucalyptus oil and lavender oil. And for daytime drinks she's sipping on a tea made from marshamllow root, echinacea leaves, fresh tumeric, licorice root and rosehip. All recipes from the above books, naturally healing her from inside to out and best of all, easy to make.

There are plenty of chicken congee recipes online but here is ours:
Chicken Congee
1 onion diced
2 cloves garlic finely chopped
1 inch ginger finely sliced and diced
chopped chicken thighs or breast (no bones)
1/2 cup rice
boiling water

Cook onion in olive oil until clear. Add garlic and ginger and stir through. Add chicken and rice and stir through. Add enough boiling water to completely cover chicken. Cover pot but check frequently and add more boiling water, cooking for around 45 minutes until rice is like porridge and chicken breaks up into small pieces.
Serve for breakfast lunch or dinner. Or all three.

Thursday, June 14, 2012

Disability is Natural

I have just found the most incredible website: http://www.disabilityisnatural.com/


If you read just one page, read the About page of Kathie Snow. It's inspirational.


I'll leave you with this quote from the website: : "Normal is an attitude. You are what you think you are."


Right on.

Monday, June 11, 2012

The very normal birthday

We went to a great 3rd birthday party yesterday afternoon at our friend's house. It was great for many reasons but particularly because it felt like I had a regular four year old on my hands. Eva chose not to dress up in her tutu. She chose to eat a chocolate crackle instead of a cupcake. But ended up eating both. She got read books by other parents and cuddled and talked to like the other kids. She walked with assistance into the dress up room and wore a pretty flower garland and necklaces and gazed at herself in the mirror. She got to have a slice of birthday cake because it, like all the food there, was 'Eva-friendly'. She fell asleep to Kung-fu Panda and stayed snoring during the ensuing faux bar-brawl with both kids and adults doing kung-fu  moves aplenty. She got to play, eat and do whatever she wanted. We all had a ball!


Chocolate Crackles
4 cups rice bubbles
1 cup desiccated coconut
1 cup icing sugar
3 tablespoons cocoa powder
250g Copha 
(Copha is hydrogenated coconut oil found in the fridge section at your supermarket in a packet like butter. if you can't get it try using coconut oil but it will not stay as firm once it's out of the refrigerator.)
..
Slowly melt the copha in a saucepan over low heat.  Allow to cool slightly.


In a separate bowl mix together the rice bubbles, icing sugar, cocoa powder and coconut. Add the copha and mix through til combined. Spoon into patty cases and refrigerate til firm.
Eat with crunchy gusto and a chocolatey smile!
..
Copha-alternative recipes welcome please...

Thursday, June 7, 2012

More Than Words

My eldest sister rang me from China yesterday to check up on how I was going after my blog about when it was all too much. Being a doctor and all she gets worried that I may not be coping and it's very lovely but her concern was unfounded. It is after all just what life is like now. Like all parents I have days when struggles get the better of me. And although some of Eva's issues will be lifelong and not a one-off they were compounded that particular day by hormones and husband away and rain that just made it all too much. Anyway, wandering off track ... my sister! Yes, my sister is living in Shanghai and has gone from being Paediatric Emergency Specialist to Blogger Extraordinaire. She has even won awards for her photos!* Jealous much? Yes, I am thank you very much but she's my sister so I can use it against her at a later date. She's also an extremely talented writer and put this lovely event so succinctly for Shanghai's City Weekend magazine that I wanted to put up a link to it. 
Thanks sis.
http://www.cityweekend.com.cn/shanghai/articles/blogs-shanghai/family-matters-shanghai/more-words-how-one-child-connected-china/


*She's also good at speaking Chinese, cooking, drawing, sewing, is stylish and genuinely friendly and can tell a darn fine story. But she can't sit still for longer than a second. And that is something I excel at. Phew.

Tuesday, June 5, 2012

Flirting with Algebra

A parent posted this on Rettnet - the worldwide forum for parents of children with Rett Syndrome to ask questions, get advice, give advice and every now and then brag about the wonderful things our kids can do.  This email sums up the trials and tribulations of the education system and the wonderful surprises that make it all worthwhile:
...
Need to brag. Arianna has just finished her finals for the 9th grade. I
just found out two months ago that in her 5th period class, (Algebra 1) she
has no 1:1. This is when her 1:1 went to lunch. Well that explained why
she never had math homework. I blew a fit when her math teacher said
Arianna just sits in the back of the room until her 1:1 comes to take her
to the next class. I asked what does she do. He said she just watches
everything he does on the board, but feels she is just flirting with him.
He said he will not give her the final. I said yes you will, and you will
make sure her 1:1 makes her do it. The final was this past Tuesday. This
morning he told me he gave her the final, and watched her aide from behind
and that Arianna answered all problems on her own. She did not do the last
two problems because time was up. The best part was that Arianna got a 98%.
The teacher said what he thought was flirting, was really Arianna learning.

...

Monday, June 4, 2012

The Legend of Linda Burkhart

Not far into our diagnosis of Rett syndrome two years ago, I heard the name Linda Burkhart and pretty much forgot it. But her name kept coming up again and again and from a variety of sources. So when I saw her listed as a speaker at the Spectronics in Oz Conference for 2012 I booked in and wasn't disappointed. She gave a keynote speech to hundreds of therapists, educators and parents who heard her talk about Rett Syndrome again and again. It was so exciting for me as a parent who is often explaining Rett syndrome to our own therapists! Then at the end of the day she gave a talk specifically on Rett Syndrome. It was brilliant and I learnt so much that I thought I'd write about the tips I learnt on communication as well as her info on the brain. You can also get pretty much all this info and way more on her website: http://www.lburkhart.com/ and this handout in particular was very useful. 
So here in as good a nutshell as this nut can provide, are the gems I gleaned.


Waiting is the most powerful therapeutic tool we can learn.
Given that apraxia (the inability to carry out a cognitive intent) affects almost all girls with Rett syndrome and it affects all aspects of their intent you have to be patient and just wait for them to respond. Getting the word out or the movement or the eye pointing is challenging. They can go from being very engaged to spaced out as processing information takes time and you have to wait for this. 
The neurological stereotypies (the hand wringing, hand mouthing and other hand gestures) are a huge barrier to effective communication and masks their intelligence. They are often misunderstood as people associate putting your hands in your mouth or wringing them together as a sign of being cognitively deficient.
Music and arm splints can help reduce stereotypies.

Learning is connecting intent with movement.
The more kids like something the more they repeat it therefore the neurons involved get stronger. Children like to see why they are being taught something. If we teach in context with active experiences and when its happening, not through isolated drills then our child has more chance of forming a strong neural connection and will be able to connect that set of neural networks to the rest of their knowledge.
Because girls with Rett syndrome often have a challenge with one sense over another it’s important that we get information across to them in as many modalities as possible. 


Repetition is crucial to learning for ALL kids. But ...
But balancing repetition with boredom is the challenge. If your child has understood what you're trying to tell them and looks bored, be happy but concerned. Happy because it means you have a smart cookie on your hands but concerned because now you have to step up your ability to keep their interest.
Research shows that the best way for all humans to learn is through repetition with moderate differences. So you have to balance novel vs known. For example you could use a favourite toy in a new and interesting way that gives it a reason eg delivering a snack on the doll's trolley or use a stuffed animal to kick a ball to your child or use their toys to act out a story. 

Learned Helplessness and Rewards are the enemy.
If you help your child too quickly you interrupt their thinking process which then interrupts their neurons from forming a lovely solid path. If you help too much too often you end up with learned helplessness. Learned helplessness can be a big challenge to get beyond so we have to go back to the learning cycle and facilitate problem solving.
External rewards and reinforcers can reduce mastery .  Kids don’t like to be told what to do yet we spend a lot of time telling them what to do. Show me this, read that, do this. When we do that too often then kids figure out how to do what you want them to do rather than figuring out what they want to do.


Active Learning is key
Active learning is not just intent, it's about allowing the child to participate in learning in the ways in which they are able. If they can see a reason or purpose to participate they will be much more likely to be actively involved. Help a child by supporting their initial cues for movement and participation instead of prompting the initiation of that movement. If they get the point of moving (yes/no or pointing or hitting a switch) then that's working, it doesn't have to be a perfect movement. Start with what your child can do successfully and then build on that.
Show your child how it is done, use self talk, go slow and display patience and attention. If you are using technology like switches, make sure it works quickly once it's been hit - nothing worse than getting the movement correct only to have to wait for ages for the thing to work.


Augmentative Communication
If you’re using low tech or high tech communication devices and you don’t know how or even why then chances are your child won’t either. 


There was SO much more but we also missed out on a lot as there just wasn't enough time in the conference to cover it all. But as I said, it's all on Linda Burkhart's website listed above.


In our case with Eva, this last one has hit home big time after the conference and for Eva to succeed in communicating we have a LOT more work to do. But what an amazing step for her it will be... hey Linda, can I borrow your brain for a few years?

Saturday, June 2, 2012

Thank goodness for chocolate (and friends)


I wasn’t going to put this up on the blog. I just wrote it as an outlet at the end of the day yesterday but perhaps it’s important to put up. Important to remind myself that for all the optimism that I nurture the dark side is there and just as important to accept. And besides, alls well that ends well - it was pasta bolognaise, red wine, a shoulder to cry on and chocolate mousse that did the trick and reversed what another mum has coined “the mean Retts”.
 ...

It’s actually possible for tears to put out a fire. I know because I’m doing it. Today was the antithesis of the last post. Today I’m just damp from inside to out.  I’m just so sick of fighting. Its not only because I turned up to Kindy and was told I had to take Eva home as her aide was away. Although that did make me burst into angry tears. They thought I knew that if her aide wasn’t there then she couldn’t be either unless I stayed. I didn’t.
No, it’s the daily fights I’m just sick of fighting. I don’t know why it has to be so hard to be disabled in a really normal country. And why if you want to do anything other than the norm its like ice-skating uphill in a gale.
I’m not one for crying. I prefer to do actions like ranting or writing a rant or seeing my local member for parliament. But I truly give up today. It is too hard and too constant.
In my efforts to give Eva the best chance in life I try most things at least once. But there are so many battles to do that. If I want to try natural remedies before drugs (that have serious side effects mind you) I'm seen to be a loon or at worse damaging my child and treated like a fool. If I want to have inclusion for her at school so she is included like a normal member of society I have to practically write an essay and deliver a Martin Luther King-like speech before being given the time of day. And it’s not just the doctors and schools. I have had private therapists give me a hard time about types of normal therapies they personally don’t believe in and if you so much as question their bias you may as well declare yourself an extra-terrestrial for the kind of response you get. And then there is the inaccessible (to wheelchair/prams) shops, houses, schools and cafes, small doorways, stairs and the stares. And so much more.
I am so sick of it all.
...