Why election year is an anxious time for disabled people

Last year in New Zealand we had an election, many Disabled were anxious and hoping Labour would win….why? Because the party that actually won the election, have targeted us every time they have been in Governance!

We as Disabled suffer under parties like National and ACT, for they are for the rich, white, straight and abled people. If you’re poor, they make your life miserable, Disabled? Yup your life will be miserable!!

With Labour, they look after the underdog, they have increased the benefits, they made prescriptions free for all (National plan to undo that), they brought in KiwiSaver (which replaced the original Super, which funnily enough National got rid of when Rob Muldoon was in power!)…..Labour also buy state housing which National sell off every time they get in!

So if you ever wondered why we get anxious every election year? It’s because our lives depend on the result.

Book review, must read!

I am currently reading a book on Audible that I believe is a MUST READ for not only Autistics but parents of newly diagnosed children, Adults newly diagnosed and, so called professionals*.

This book is aptly titled I will die on this hill by Jules Edwards (a.k.a Autistic Typing) and Meghan Ashburn (a.k.a Not an Autism Mom), and features exerts by other (some well known) Autistics too ie Danny Whitty (a.k.a Danny with words).

Why am I so excited about this book so much? For starters it will make you think twice about everything you have been told/read about Autism (yes, Autistics not being able to experience empathy, IS a myth!), and shows that non mouth words using Autistics can still have a voice (why people believe they can’t is beyond me, I mean people with Cerebral Palsy who don’t use mouth word, get AAC, so what’s the difference?).

I fully encourage everyone to read this book, whether in hard copy or audio, and please let me know your thoughts in the comments below.

I will put the links for the pages listed above, in here.

Not a Autism Mom

Autistic Typing

Danny with words

Please go visit their pages.

Embracing the language I should have been taught as a child

Imagine not hearing everything you should, now imagine being called a liar by your own Mother because she would rather believe the so called specialist who tells her I “hear perfectly fine”….now imagine Teachers and other people picking up on it but again when you suggest you get a hearing test, you get resistance and “Why bother, it’s a waste of time” from said Mother?

Finally in my 20’s I found an Audiologist who listened to ME and I got my first pair of hearing aids, Oh my gosh there were sound my brain never knew existed, car sounds were loud and I started trying to learn Sign Language….the language that should have been mine from a young age but, like many Deaf in the past, was denied me by someone in denial.

What makes me laugh about this person is, she agrees with me when I say parents forcing Cochlear implant’s on their deaf children and refusing to let them learn sign, should be letting them learn as technology maybe advanced, but it still fails….batteries go flat, children are rough and the CI can get broken, what then? Are those same parents going to keep the child home from school for weeks while the implant gets fixed?

I am loving learning my language, I am even getting my workplace involved as this week is NZSL week here in New Zealand!

Come join me in the journey, wherever you are in the world, why not embrace your country’s Sign Language, not only is it beautiful and expressive….you may be the difference between a deaf person having a good moment, or another “if only someone knew basic sign” moment. Not only that, we love people who try!

These are my thoughts, feelings and words!

People think because I require the use of AAC, that these words do not come from me, that they are not my thoughts and feelings. CORRECTION, everything you are seeing and hearing is all me, when you hear me use mouth words, you only get 40% of what’s in my head as there is a disconnect between my brain and mouth.

Many people believe AAC users all have intellectual disability and treat us like babies by talking to us in patronising, high pitched voices and speaking slow (please don’t, even if they DO have an ID, they are still humans who deserve respect!) and there are a few Speech Therapists who believe there is a criteria to getting AAC which seriously? Is there a criteria for people who use mouth words to pass before they are told they can use their mouths?

Now on the subject of being a good Communication partner, Communication partners are very important to a AAC user, we need to be able to trust in you and know you have our back. I am going to tell you how you can be a great Communication partner
1: Presume competence, there is NO prerequisites to getting an AAC device.
2: Please do not look over our shoulder, you wouldn’t like it if we looked over yours.
3: Be Patient, typing our message takes time and effort.
4: Unless you have permission from the AAC user, do not finish our sentence for us, it is really annoying and tells people that you don’t think my voice and opinion is important.
5: Under NO circumstances should you remove our device from us, sadly this is often done by A.B.A Therapists and Teachers and only given back when the user complies!
6: Keep the device in our sight, imagine if you wanted to communicate and your mouth was not where you could reach it, it would make you feel frustrated.
7: Model, I cannot emphasise this enough.
8: Don’t touch our device, model on your own device, otherwise the user will learn it is not their voice and may refuse to use it.

Thank you for reading.

Why labels are damaging

When you or your child gets an Autism diagnosis, you may hear the terms “low” or “high functioning”, do not ever use them!

These labels are damaging for many reasons and I plan to explain why.

If your child is labeled “low functioning”, it would be for two reasons….either they were delayed in speech, or they have a comorbidity of an intellectual disability. Specialists use these labels for the very same reason they use IQ tests….to accept or deny resources! Someone diagnosed with Aspergers or “High functioning Autism” are quite often denied accommodations/resources as they are seen as “not bad enough”, yet specialists don’t realise that there are times those people have days when they do not/cannot function ie I know people who are “high functioning”, who go non speaking (I am one of them), and/or can’t do anything for a day or two because their bodies and minds are recovering from Autistic burnout (yes that is a thing), I also know of someone who has Autistic Catatonic episodes (again there is a thing).

Those labeled “high functioning” have to fight for every need, while those who are “low functioning” get everything, also they are often labeled “violent” and standards for them are not as high, parents are told they won’t be able to go to University so instead of “we’ll see about that”, parents don’t let the thought that “actually, they could if they wanted” enter their thoughts.

Not only that but functioning labels imply Autism is linear, it’s not, it is a SPECTRUM….hence it is called Autism SPECTRUM Disorder not Autism Linear Disorder.

Please refrain from using labels, doing so underestimates your child’s potential!

Please be patient with me

Those who know me or those of you who follow me on Facebook and Instagram will know I am semi speaking and if I am overloaded/overwhelmed or in pain/don’t have the spoons (link to the spoon theory will be in this blog), I will shut down or just not speak. This is not a choice (so please don’t call it “selective”), speaking for me is very tiring and uses much needed energy to which I would prefer to keep for my other bodily requirements like getting dressed or eating etc.

In early to middle September I received an iPad with Proloquo2Go on, this has opened up my world as I can now tell my Staff everything that is in my head (what I speak is only 40% of what is in my head). So far I am still learning and my vision and hand mobility issues also make it a slow process, so if you meet me please be patient with me!

Please encourage me, I love having conversation but I have trouble starting one (although now I have my AAC, this may change). Please share with me your interests, I actually prefer to hear about you more than I like to talk about myself!

The Spoon theory

How you know you’re expecting too much from your AAC user

I often see parents or Support staff (including Therapists) come into a group I am in, who tell the AAC user has had their device for a week but isn’t making progress. These people don’t realise what it takes to become a proficient AAC user, it takes more effort then it does to learn to speak with your mouth, so I am going to explain why you maybe expecting too much.

For many of us, we have disabilities that hinder how we may interact with our devices, some people can only use their heads because their arms won’t cooperate with their brain….let me give an example;

Brain “Hey Arm, I need to type this message“. Arm “Oh you want me to knock the drink off the tray? Ok” *knocks drink on floor*. Brain “Really?”.

Some of us can use our hands, but they like to dance to their own tune (I am one of those people), again I will give an example;

Brain “Hey arm, I need you to get that cup of water to mouth”. Arm “Yeah sure *picks up cup….starts spilling it everywhere* Aww man! * eventually gets cup to mouth*”.

Some people have processing issues (again I am one of those people), here’s an example;

Friend “Hi, how are you?”. Brain “……..oh I have been asked a question, better respond” *gets hand or head to type* “Hey, I am great, you?”.

For those who use a head switch or eye gaze software, using AAC is very exhausting, their necks and/or eyes get sore.

They need to concentrate really hard as they watch the box first scan down the rows of either symbols or text, then once a row is selected they then have to watch the box scan each symbol or letter/word on that row till they find the one they want.

Imagine you are wanting to tell the person with you that you would like Sushi for lunch and a bottle of Coke….now imagine having to slowly and arduously spell out or find every word or symbol, not easy and very frustrating (and even more so when non users get impatient and either ask the person with you to just order something for you, or walk away and leave you still typing your message!).

Also remember, the AAC user may never have met another them where mouth speakers are everywhere….so encourage them, if you don’t have a secondary device you can download the same software on to, download something similar (many AAC companies have communication boards you can print out) and have a conversation with the user (no cheating people, eat some chocolate etc if you even THINK you’re going to use mouth words!).

Please let me know how your conversations go, you can even have the conversation while reading a book or playing with Lego.

Why you are not entitled to my life story

Hello I am that faceless person you see who is in the Supermarket or on the bus and is not wearing a mask.

You may be thinking (or even muttering) to yourself “I am sick and tired of people NOT following the rules”, me too! You see I am a rule follower, I scan whenever I see a QR code, I sanitise my hands and I wish I could wear a mask…. I really do but wearing a mask would actually be more detrimental to me than not wearing one so I am one of the few who are exempt.

I have a special card on my phone (others have a physical card), that explains I am exempt that I can bring up at any time when needed and I am happy to show it.

But unless you are the Bus driver, shop owner or the Supermarket/Pharmacy staff, you have no right to my story and if you ask me, I am not going to answer you!

All you need to know is I am in the shop with no mask on, for me to get in the Supermarket/Pharmacy I would have had to get passed Staff at the front door and they were happy with my reasoning for not wearing one.

I am NOT putting going to stand in front of you and tell YOU, Mr/Ms Nobody my personal information just so YOU can get your daily dose of entitlement!