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!

Why I don’t like the term “Special needs”

Every time I hear someone get asked what they do for a job, and they answer “I work with special needs children”, I cringe as this tells me one thing, they don’t think of our needs as the same as any other childs.

Here I am going to tell you why this is problematic, a able bodied child needs access to clothing, food, communication, a warm home and an education….and so do we (gasp!). But as soon as you start using the term “special needs” this encourages discrimination, schools try their best to not have to have the child for the whole day/week or in some cases, at all or they do their best to not have to accommodate the child (I only got full time Teacher Aid help in High school). Sometimes families are denied housing or the neighbours turn against them (there was a case where a family was literally ran out of their neighbourhood because of their Autistic son).

Instead of using “Special needs” let’s say “accomodations” or “adaptions”. So let’s look back at the above sentence and see the difference if we change a word or two “I work with children who require accommodations” or hmm better yet “I work with children”!

Choiceworks Calendar review

I am a visual person (yeah I know what you’re thinking “but you’re blind!”, but hey what can I say), and I find written diaries overwhelming. Not only do I have a physical weekly planner kindly made for me by my good friend Tim, but I started using a visual schedule app CW Calendar by a company called Choiceworks.

It is amazing, as you can add your own images as well as have access to around 180 default symbols, also it has a feature where you can ask it to count down the days until an event which helps to alleviate anxiety!

I rate it 9/10 as you can’t delete symbols that you didn’t add.

A picture of 4 elongated lines, the 28 June has a long yellow border on it.  At the bottom of the screen at the left is “Week, Month, Today” and at the right it says “Share” and “123”.
Week view of the schedule.
Schedule with the 28 June has a yellow border.  At the bottom is “Week, Month, Today” at the left, and “Share” and “123” at the right of screen.
Month view, of the schedule.
The “today” schedule, showing 3 symbols 1 has been moved to the right, where it has a big green tick on it into the “All done” box.
Day schedule.
The month schedule with a white box in front of it, saying “Print this view”, “Email this view (PDF)”, “Share calendar” and “Export calendar”.
Month schedule with options to share the schedule.
A list of upcoming events, with the words “Count days until” above.

Why labelling all picture communication as PECS is harmful

“Hello, I have a non verbal child, and we have been using PECS” or “MY child has been using a PECS board….” are things I hear from parents often, and yet 90% of the time it’s not even close, it is just a picture based board or symbol based AAC program on a device.

This post is going to try explain why you should NEVER confuse picture/symbol based communication with actual PECS. If your child IS using PECS, stop now because this is harming them!

PECS stands for Picture Exchange Communication System, and it is entwined in ABA (Applied Behaviour Analysis) which is a highly abusive therapy that aims to force Autistic people to act Neurotypical (NT). How it works is the child has an adult (enforcer) sit behind them and another adult (the recipient) sitting in front of them..the recipient will hold out something the child wants and when the child reaches out for it, the enforcer will grab their hand and force them to grab a card with the picture of the object and hand it to the recipient, then, and only then will the child receive the desired object. This teaches the child that the only way they can get what they want, is by having to exchange the matching card which in turn teaches them they have no autonomy. Also this system was created by the company in the second link, and they get REALLY mad if anyone uses the term “PECS” if it isn’t.

But if you have made or been given a board for your child that looks similar, or your child has been given a dedicated device or tablet with communication software that is symbol based on it, go for it….as long as you know that at no time has no one FORCED your child to use it.

Picture Exchange Communication System

Introduction to PECS

AAC vs Mouth

I don’t know why, but it seems if you can’t use your mouth or use sign language, any other mode of communication is considered not even worth taking notice of….I mean hey, the person obviously hasn’t the intelligence to be able to communicate properly right? Let’s not go there, there are lots of very intelligent people who used augmented alternative communication….lets start with Someone everyone worldwide knows, Stephen Hawking.

Stephen Hawking at the age of 21 discovered he had ALS also known as Motor Neuron Disease, as he got older and the disease progressed he not once gave in and with the aid of a switch controlled AAC he spoke about his discovery of black holes.

I had a friend who had Spastic Quadriplegic CerebralPalsy, he was the smarted guy I knew, who wanted to one day be the first disabled person in parliament (sadly he passed away before he could). He could tell you everything you wanted to know about elections and was a much welcomed member of the Kirk branch (the disability branch of the NZ Labour party), but sadly he was often denied the ability to show people there was someone in the body that refused to cooperate…all because he used Augmented alternative communication.

It seems just like hearing, mouth words tell people you are intelligent and are worthy of their time. Why? I mean seriously I know people who can use mouth words but oh my gosh, what comes out of their mouth is questionable, yet I would happily sit and listen to my friend all day given half a chance, and learn about elections and how Parliament worked!

My ideal world would be one where it doesn’t matter whether you speak via mouth words or AAC, you are valued either way and treated as an equal. Where AAC users can join in a conversation and not be overlooked or have the people they are speaking to walk away because they can’t be bothered waiting for the person to finish their thoughts….. but we know dreams are free and this is not an ideal world is it?

Will you be the perfect communication partner? Will you sit with us as your equal and allow us to share with you what is in our heads? I promise you will not be disappointed.