Access is defined as “permission, liberty, or the ability to enter, approach, or pass to and from a place or to approach or communicate with a person or thing” and “the method or possibility of getting near to a place or person.”

Physical access of course is a legal obligation, but what about relational access? Sacramental access? Not just access from a place of pity or even compassion, but access as co-equal participants both with unique, vital, and valuable gifts to offer.

Most often barriers to relational access are not the disability but the perception of the disability by the surrounding community.

Enter the least dangerous assumption. Coined by Anne Donnellan in 1984, it posits

“…in the absence of conclusive data, educational decisions ought to be based on assumptions which, if incorrect, will have the least dangerous effect on the likelihood that students will be able to function independently as adults.”

Basically, what will do the least harm?

The word conclusive is tricky. Most people will assume that if a “professional” or “expert” administers an IQ test that will literally inform the opportunities a person has — or doesn’t have — for their entire lives, that the test is bullet proof.

Unfortunately for nonspeakers with apraxia, a motor-cognitive dissonance (brain body disconnect), IQ tests are inconclusive because they all depend on the presupposition that the connection between the brain and the body is not impaired. All IQ tests require working fine motor skills which is an area of significant impairment in those with apraxia.

So, what do we do?

We presume competence. It’s a fancy way of saying, presume all people can and want to learn regardless of what their bodies do on the outside.

Talk to all people at an age appropriate level. Biological age. For example, if a 10 year old nonspeaking autistic with an impulsive body walks through the doors of your church, or spins through the doors, or jumps through, think about a typical 10 year old boy in your parish, and speak the same way to the nonspeaker. It takes a little practice at first, but it will become second nature. With this simple reframing on the part of the majority of the parish, two way relational access is established. And, it’s free!

If an adult man with down’s syndrome comes to church, greet him and treat him like other adult men in your parish. Invite him to things. Talk to him. Eat with him. Get to know him. Be candid. Let your guard down. Yes, presumption of competence works for people with Down’s Syndrome too. And Fragile X. And Cerebral Palsy. And any other disability on the planet.

All the questions and arguments coming into your mind right now are fine. “What if I can’t understand them?” “What if they don’t understand me?” But here’s the thing…

Just try it for a while.

That’s it. Presume competence for a while and see how it goes. I bet you’ll be surprised.

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To Be Continued…

https://annedonnellan.com/

https://www.psychiatry.org/patients-families/intellectual-disability/what-is-intellectual-disability

https://www.merriam-webster.com/dictionary/access

https://dictionary.cambridge.org/us/dictionary/english/access

My 11 year old nonspeaking son (he writes at iosemt.substack.com) spelled the question above to his SLP and SPED teacher using his Letterboard after they observed him calmly and beautifully spelling for at least a half hour in a lesson context. He answered age appropriate questions with clear, precise, regulated spel…

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Imagine if the test decided my fate.

Imagine if after that, I was no longer offered an education.

Imagine if I couldn’t tell anyone about it.

Couldn’t speak.

Couldn’t explain.

Couldn’t write.

…

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So, if I get tons of you to subscribe for free there’s a chance I could get a used pair of Nellie’s socks and a lifetime subscription. I’ve been a paid subscriber since the get-go because at the time, no one else was actually doing journalism and I’ve got this weird thing for truth.

So. Here’s a link!

The Free Press

A new media company built on the ideals that were once the bedrock of American journalism.

By Bari Weiss

Next up. Lots of strangeness interesting vibes in the broader spellerverse recently. At least for me. Firstly.

What is Vani and how do we I feel about it?

Even though I know typing apps are intrinsically problematic for those with apraxia, I was still weirdly excited. What is it? Basically, it’s an app that makes your iPad into a Letterboard. Features include being able to change background / letter colors, algebra math boards, and voice output with many more to come I’m sure.

Initial problems - if your poke swipes down at all, the laminate swipes away. They’ve said that will be addressed in their next update.

Because there is little/no tactile feedback (even less than a keyboard) this app would not replace any physical stencil / letterboard in the acquisition phase of S2C… You can’t make a kid play baseball better just by giving them a fancier bat.

That being said, once someone is open/fluent on the laminate (like actually open), it may be an option for them to explore if they want to.

Possible benefits.

It’s sorta cool. My ten and eleven year old spellers like iPads. I like iPads. Make an app and I’m at least a little interested.

Schools (whether right or wrong) seem to LOVE anything tech. It may be an option for proficient spellers in the application phase in a school setting???

Basically. Don’t ruin this by trying to use the three boards on the app or by trying it with someone in the early acquisition phase. If they haven’t been successful with typing apps before, there’s no reason to think they’ll magically be successful with this one just because it looks like a Letterboard.

*More to come on Vani including thoughts from nonspeakers.

WTHeck is going on with this communication4all “case study”?

I’m just going to come out and say it as kindly as I can because someone has to. Communication4All is a nonprofit with a lovely mission. To provide communication access to as many people as possible free of charge. Find their mission here. Which sounds great and is commendable (except it doesn’t actually work that well in real life) and I get it. Until I didn’t. A couple days ago I watched session 4 of a “case study” with a 6 year old kid named Leon because it landed in my inbox. It floored me. Basically they’re like, ‘watch this! He couldn’t sit still now after six months he’s spelling his thoughts!’…except what I watched was shocking, and not in the good way.

I generally don’t call people out or speak poorly about other practitioners/methodologies and I don’t intend to do that now, however, I feel like this is more like when there’s a person dying on the sidewalk and a bunch of people are just watching because everyone thinks someone else is going to help.

1. THIS IS NOT S2C. As an S2C practitioner committed to best practice, I do not in any way want to be associated professionally with what I saw in that video.

2. I owe it to my non speaking kids to say:

3. THIS IS NOT OK.

4. Making a kid spell I WANT CANDY (when who knows for sure if he really does or not) is not “talking”

5. I have spent years working with my own kids and their schools and am protective of their futures and the futures of all nonspeakers. This isn’t about us, it’s about them (nonspeakers and protecting their right and access to communication).

6. I want Leon’s Mom to know that this isn’t normative practice.

7. I want Leon to know, there is still hope.

My non speaking son urgently wanted to write a letter to Leon after he saw just a 2 minute clip of the “case study.” He stayed up until 10pm to write it.

Here’s the video I watched.

*More to come including thoughts from nonspeakers.

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Poetry

My non speaking son Geo wrote his first poem with his other practitioner Tara. Sharing here because he’s already posted it on his site iosemt.substack.com

This is a transcript of the poem. Geo spelled the words out letter by letter on his laminate including the line breaks.

Having multiple CRPs is such a priority and I’m thankful that Geo is open with several people which brings me to…

Blogs

Some killer blogs on how to be a great CRP coming from Tara Sayuri Whitty. I so appreciate her thoughtfulness and how practical her writing is. These are great to print out and have on hand.

Practicing S2C at Home

Slow is smooth, & smooth is fast

Channel your inner coach

And finally. We’re not trying to get you to slow down just to be a drag.

It’s also not a cop out because we’re not as good as those practitioners who promise they can get you there faster. We are as good.

Here’s a blog I wrote as the beginning of a broken seesaw series that may shed light on going slow to go fast.

Patience.

Happy Spelling,

Gigi

Four: Take the preferences and personality of your nonspeaker into account: This seems obvious but it took me a long time to really wrap my head around. I am a mom, but I am also an ambassador or representative for my nonspeaker, especially while they are in the acquisition phase of spelling to communicate. My nonspeaking son would be MORTIFIED if I were rude or even too forward, blunt, or entitled in any way in an IEP meeting. It doesn’t mean he doesn’t want me to stand up for him. He wants me to write, to speak, to model, to help people understand nonspeakers.

When I think about how my kids feel about the way I act, it is very sobering. I also consider the fallout. I want people to get to know my kids without being predisposed to dislike them because they dislike me.

Five: When all else fails, find a way around. I came across this quote while writing a lesson about water, and I love it.

Margaret Atwood said:

So, go where you want to go, with flow. This year has not turned out at all like we expected. The teacher we were planning to have found a different path. The new teacher seems amazing, but it’s like starting all over. I told Geo, let’s give it a few weeks and assess. I reached out to our nearby Farm School to see if it would be an option for him to go there and for me to train a CRP. I want him to know that we do hard things, but we are flexible. If something isn’t working, sometimes thinking outside the box provides another way.

Six: There are times to blaze trails more forcefully and also, let them know they matter. These thoughts I’ve put down are not the only way and not always the best way. We also need people to hold others accountable. And sometimes at the right time in the right way, someone fierce gets laws changed and it’s amazing. I think it’s important to let our nonspeakers know that their very existence in and around others is important. It is paving a way, one difficult brick at a time, so that future nonspeakers can walk the path of education and communication with less difficulty than those who came before. Every little bit matters.

As a (mostly) nonconfrontationist, the above approach makes me feel uneasy. For a long time, I thought that in order to be a good advocate for my disabled kids, I had become an expert in the law, find skilled advocates, and go to battle. I thought I had to be a lawyer, speech giver, soap box stander…fierce. Now I think sometimes (not all the time) there’s another way.

For those of you who are skilled in the fiery advocate arena, this isn’t me throwing shade (do people still say this? did they ever?)

Don’t let me drizzle on your rizzle (is this a thing?)

For the rest of us, I like to use what I call the “IEP meeting over a cup of coffee” approach. And no, I’m not joking.

One: De-defensive the other side of the table. Teachers and therapists are usually on the defensive…for good reason. It is based on their past experiences. My first goal going into a meeting is to help us all find REGULATION. It’s impossible to collaborate if anyone is on the defensive. Or if I’m crying and begging them to get rid of a color goal. No one is going to be able to focus on writing good goals if their bodies trip into fight or flight.

I (now) believe that the vast majority of school educators love and want good for kids. Our “good” may look different and that’s where we strive to find common ground over time.

Just like in S2C where we wouldn’t approach an issue head on because it’s disregulating, we can give a sideways glance to the IEP meeting, at least in the beginning..

At the start of the meeting, I try to acknowledge what we all know is true. “Teachers, therapists, you all do such hard work and are underappreciated. Thank you! I am so grateful for the option not to homeschool!” (Which I have done - props to all you homeschooling parents and caregivers out there). Sometimes I do even bring coffee.

Two: Most of the time, real change takes time. This one is hard for me. I want people to immediately see what I know is true.

But asking a special education teacher to immediately believe that your nonspeaker is intellectually competent and maybe even gifted before they even know them is a little like asking an atheist to come to Christ, shout hallelujah, and then risk their lives being a missionary. They aren’t going to do it just because you tell them to (at least not that I know of).

True knowledge and understanding, the kind that causes someone to cry when they see a nonspeaker spell openly on a Letterboard, can’t be bullied or shoved into or onto someone. It has to be discovered - by that person.

Bit by bit, piece by piece, in a way that is personal and applicable to the discoverer.

Three. Don’t throw all your cards on the table. The tendency, for me at least, is to want to show or tell the highest level of fluency my nonspeaker has mastered in order to show they are competent. “She knew what NASA stands for and spelled it on the 26 board!” “He knew what DNA stands for…it was a blue question…I didn’t even know that!” While this may make others in the spellerverse smile and cheer; these words fly right past most people, and make us look like delusional babbling heads.

In most instances, I believe an educator will be able to attach much more meaning to a totally accurate, clearly purposeful spell word or green question - even on the three boards.

These crumbs are key to the start of the exploration. The discovery has to begin at a believable point for people.

To Be Continued…

Actual picture of my MIL’s house

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