Tag Archives: autism

Finding a way out from the upside down – Communication in Autism

This popped up yesterday from 3 years ago and it really struck me how our current system can underserve our children. Up to this point the school had not even been willing to assess EJ for the use of AAC (Augmentative and Alternative Communication) which can be anything other than standard methods like speaking. So for instance, letterboards, iPad apps and dedicated devices are all part of AAC. We were lucky…he showed us he could read by matching pictures to words just a few months before this video. This was the day when I realized he could break down words into letters and type them. Looking back it seems nuts that I doubted that for even a millisecond but we were told he was just gonna learn life skills and probably would not be able to read or write.
Also yesterday I was commenting with a mom whose son started spelling to communicate with her by using his magnetic alphabet letters on the fridge. It reminded me of EJ showing us glimpses like this (it also reminds me a bit of Stranger Things, hence my blog title). These children were all able to find a path to show they were in there. Some…many children may not have those opportunities or motor skills so the current system just labels them severe and low functioning. It is us that need to function better to find the different ways to help people communicate and access everything the world has to offer.  We need to stop setting expectations so low and to presume the best in ALL.  We must do better.
Here’s my response to the mom whose child was able to show he could communicate by using magnetic letters…
“First, can I tell you how my heart just leapt for joy at the fact he started communicating through spelling to you on a magnetic board! He found a way to show you his intelligence at such a young age! My son loves letters and would trace them on signs etc but many in the current system wrote this off to OCD. I met another boy whose mom was told to stop sending him to school with the alphabet flash cards he loved because “he won’t be learning to read or write so they are just a distraction” (SMH) I am by no means an expert because we were able to pull my son out and homeschool him when we saw how detrimental our school options were. But my thoughts would be for you to train or bring a trained IA who can help with the regulation piece. Remind the school that it’s the SENSORY REGULATION part that will need a carefully thought out plan and not the ACADEMIC SKILLS or INTELLIGENCE part. Try to impress on everyone who has the honor of working with him that respecting his intelligence and speaking to him in a calm manner will help to build his confidence in them. It’s so critical to build that relationship and environment of not only awareness and acceptance but EMBRACING and ENGAGING confidence. With homeschooling we were able to cut out the non helpful ones along the way but you’ll have to be vigilant since he’ll be at school. It’ll go a long way that he knows YOU know his capabilities. Reach out to this community often. Best people on the planet IMHO 

Thanks for reading!  Next post will be more EJ writings.  I just did this one after bedtime so I wasn’t able to get his help.

2 Incredible Years – Insights from an Involuntary Vow of Silence – by EJ & Mommy

Looking back on the last incredible 2 years from being considered “a non-verbal, low functioning autistic child” to the point where EJ is planning retreats for spellers/typers and being asked to put together a book.  We truly hope that by sharing our story we help encourage others to follow their gut and if nothing else expose ALL people to the wonders of an engaging education.  Even for those who believe there are kids who “can’t learn” (a completely false assumption) why not just read interesting material instead of preschool readers.  If they aren’t learning anyway at least their aides will be less bored.  And maybe just maybe they’ll start to engage and realize there are MUCH better ways to teach MUCH more interesting material.  (steps off soap box)

OK, so EJ is now typing and spelling purposefully & fluently with pretty much any well-trained communication and regulation partner, but as this blog is going to jump back and forth thru the journey here is a clip from 2 years ago just after returning from our first camp with Soma Mukhopadhyay.

It’s cringe-worthy for me to see this because I have learned SOOOOO much and I see all the things I could be doing better, but I’m hoping that showing some of these early lessons will be helpful to others.  We would love to help others to identify the best and most effective ways to teach. -Sabrina



So we’re back to this blog with great news from the communication front.  It’s an interesting perspective that we hope will be helpful to others at any stage of this journey.  Today seemed like a great day to look back at the incredible journey of the last 2 years.  From goals of the alphabet and the numbers 1-20 to being assessed at grade level in math (5th) and 7th grade level in language arts.  I kept up with our journey on facebook so often I will link back to the videos there.  My hope is to offer insights and updates on our current achievements while also looking back at the steps along the way.  EJs hard work and dedication have been super inspiring and kept us all in awe.  It was 2 years ago today we headed to Austin, TX and our true RPM journey began.

We had just started homeschooling and something in my gut said, “we gotta see Soma”. I was prepared to just end up wrestling with him on the floor while trying to absorb her wisdom and then lo and behold he just sat with her and went at it. At some point she breezily asked him what airline we flew to get there and he pointed to S-O-U-… after I picked up my jaw from the floor I thought, “now we have got some work to do” We’ve all learned so much these last 2 years (huge understatement). We still use TouchChat for basics but as a wise fellow Speller once said, “(with an AAC app) I could order a cheeseburger, now I can write the menu” ❤️

Chapter 12 – #TeamEJ – Unlocking EJs Voice – Happy Birthday Meredith

At the end of this lesson EJs verbalized 3 syllables at a time…that was huge for us.  I loved that it was the highly motivating name of his wonderful stepmom Meredith so he could wish her a Happy Birthday 🙂

Chapter 11 – #TeamEJ – Unlocking EJs Voice – Epic Session

My main goal with this session was to make sure it was fun and interesting and keep him engaged.  In my wildest dreams I did not expect him to sit with me for almost 40 minutes!

I can’t imagine many of you will want to watch this whole thing so I wanna hit on a few highlights…

In the very beginning he says “morning” which was such a shocker by itself.  Then he’s making animal noises and all sorts of fun stuff.  I had heard at a TACA Support Group at WRTS Whittier that the best therapy for nonverbal kids with apraxia (although I still need him to get an official diagnosis) is PROMPT.  Now that we had decided to homeschool I contacted Leann Schouten of Jump & Schout Therapy because she is the best at PROMPT and we happened to know each other from swim lessons and gymnastics over the years…small world for sure.

OK, but I digress…the other amazing moment in this session was that at 26:30 when I’m sure he needs a break he actually asks for MORE…wow!  He asked to learn more.  It struck me that if I could work learning into his high interest areas with lots of stuff to make it fun that the sky really would be the limit.

Knowing that he learns best with visuals I thought we’d use google images to pull up pictures of what he types.  He decides to take over and do the typing.  He even starts to figure out how to use a track pad and mouse since it’s not a touch screen.

There’s such a soft spot in my heart for this session because believe me there are days we get very little accomplished.  On those days I take the advice of a fellow homeschooler and just curl up with a good book and read to him…oh sure sometimes we plop on the gym floor and he swings while I read.

Chapter 10 – #TeamEJ – Unlocking EJs Voice – Shapes

At the time I had no idea we would end up homeschooling EJ and just tried to do all his work at home or the gym as he continued to refuse to go to class.  We actually homeschooled our other 3 children but I never really thought I would be able to teach EJ.

Since the heat was subsiding we tried really hard to get him back to class.  He went 1 or 2 more times but then started to refuse with a lot of passion.  One day he was clinging to the seatbelt for dear life and then reached over and shut the door.

I figured he wanted to just have fun lazy days so I made it very clear that if he didn’t go to school he would still be doing schoolwork with mommy.  He seemed totally fine with that idea.

While going thru a 2nd grade curriculum book I realized he was really far behind in math particularly.  Of course he was behind in most subjects but with words I could do cut outs and RPM and help him grasp the material.  Math was gonna be a toughy.  He hadn’t shown mastery of the numbers 1-20 so he hadn’t been able to move past that.

It suddenly dawned on me that we wouldn’t be held to the same stringent restrictions of a school special ed program and could start to teach him more complex math.

I had heard great things about MathUSee so we go those manipulatives and the Primer book.  I believe with all my heart that EJ can learn math.  His visual memory is really remarkable because he learns to spell words correctly in just a couple tries.

I can’t be sure of course, but I hope someday to ask EJ exactly why he decided to homeschool.  I think our AAC/RPM sessions may have been part of it.  I know another huge benefit was that therapies we couldn’t get into because of the limits of after school hours were now a possibility for us.

Chapter 9 – #TeamEJ – Unlocking EJs Voice – The Heat

In the interest of keeping it real I posted this session on September 10, 2015.  We were nearing the end of the 2nd week of ridiculous heat.  It was keeping the kids in the classrooms all day which is pretty much torture for EJ.  He was really not in the mood so I was trying to stick to something he’d want to chat about…animals.

He has a voracious sensory appetite.  I’m not sure I have ever seen him truly reach the point of satiation to be honest.  I think he does a pretty good job at the gym getting himself regulated but then all of the sudden he’ll be back flying on the swings or climbing everything in sight.  So naturally this crazy heat wave that was making all of us tired and irritable was taking it’s toll.  He finally typed WATER in all caps and then packed up when I went to get it.  He’s a smart one for sure.

I am so thankful that we have the We Rock to get all this input in a safe and healthy setting.  Since we had to rush to different therapies we weren’t getting as much gym time as he probably needed to come back from the confines of the classroom without being able to play outside for recess or lunch.

The next morning when we pulled up to school he started to get very agitated and upset.  I handed him his iPad and first he just pushed it away.  I gently handed it back saying,  “if you don’t want to get out of the car you need to tell me why because it’s time for school”.  He grabbed it and said, “I want to go to my house”.  I said, “why? how are you feeling?”.  He replied, “I feel scared, I feel bored, I feel tired”.  He was visibly shaken and upset.  Short of attempting to wrestle him out there was no way to get him into school and also I wanted to honor his first true communication during a time which normally would’ve escalated into a full meltdown.

This was 9/11/15 and at about the exact time tragedy struck across town when a non-verbal autistic young man named Paul Lee was left in a school bus on this horrible hot day.  I’m not at all saying EJ was scared because he sensed that but I do think this heat was doing a number on all of us.  Please join me in doing anything we can to help those who are not able to communicate.

Chapter 8 – #TeamEJ – Unlocking EJs Voice – Verbalizing

So here we are after just a couple weeks of working more specifically with alternative teaching methods and assistive technology.  Specifically RPM with lots of visuals and TouchChat as an AAC app.

This lesson was so significant to me because he really started verbalizing a lot.  I was so caught off guard that I didn’t even notice him proudly saying “brown” until I watched the video.  I have to say that I started video taping mostly so I could share with friends and family on Facebook but I’ve found that I learn a lot from watching the videos.  First, I get to see what I’m doing and how he responds.  I love that as I’m writing out “light blue” and “dark blue” he is watching me over my shoulder.  I had been reading in one of Soma’s books about open learning channels and I just feel like somehow these approaches are helping us find and open EJ to a whole new world of learning opportunities.

Watching him trying to sound out “orange” with all the side to side mouth movement is probably one of my favorite parts of this session.  One of the biggest misconceptions about AAC devices and teaching nonverbal kids to type is that they won’t develop verbal language.  I believe the exact opposite is true.  It certainly has been for EJ.

First of all we have no right to restrict any type of learning that could enable communication.  But more importantly it’s giving him an avenue to learn more and get constant verbal feedback while building the words visually.  The more senses we can involve the better shot we have of retaining that learning.

Think about the early deaf schools when people thought that teaching sign language would impede verbal language.  Kids would secretly teach each other in the restroom so they could communicate.  Teaching someone any method of more effective communication is our duty.  OK, I’m climbing down off my soap box now…

Chapter 7 – #TeamEJ – Unlocking EJs Voice – Colors

There were 2 main things I was hoping for during this lesson.

The first was that if we talked about something very high interest it would keep him engaged.  He’d been watching this Max and Ruby episode so I hoped he would let me pause and discuss.

There were 3 colors that I had yet to have him spell and he got “yellow” perfect on the first try.  It’s amazing to me what words he already knows how to spell.  Most of the words he knows from videos, but I’m not sure where he picked up the colors.  Perhaps at school?

One thing that I found hugely encouraging was that when he misspelled a color, I could show it to him on the paper and he was actually eager to spell it correctly.

During the few weeks of doing lessons I feel like he was getting to express stuff that he hadn’t before.  RPM and AAC are giving him a glimpse of the possibilities that communication can provide.

Looking back at this lesson I wish I had asked him more.  Hindsight is 20/20 as they say.  It is so encouraging to see his actual desire to learn.  Just about 1 month before I could never have imagined him sitting still with me for this long.  As long as I can work learning into high interest subjects and keep things fun I think the sky is truly the limit for EJ…and for every child as we find the learning methods that resonate with each individual.


Chapter 6 – #TeamEJ – Unlocking EJs Voice – Lion

It’s really been interesting for me to go back and watch these first videos of EJ and I typing and using AAC and RPM together.  There were a couple more where I’m on his left and then read about how I should be on his right.  In this video we start talking about colors and I’m trying to wait to see if he can find the answer without choices.

I end up giving him 2 choices and only write if I think he needs to see it.  He would love to copy type everything I think but I know I need to help him pull the words out and not depend on the crutch of copy typing.

During a lot of my reading on RPM, I read about using the stencils even if the child can type.  This has been really difficult for us because he seems to really resist the stencils and some of the other basics of RPM.  He sometimes doesn’t even point to the choice and just types it.

I think one of the things that is so critical in teaching is finding ways to make it fun and interesting.  Wouldn’t we all hate sitting through something boring and repetitive?  I fear that so often our children are given drills that build more walls than they tear down.

I know EJ loves animals so I tend to gravitate toward them in every lesson somehow.  I love that he giggles at the notion that a grasshopper would RRROOAAR like a lion.  It’s one of those “silly mommy” giggles that I hope keep him sort of amused during our lessons.

In these early lessons, I was just thrilled if he’d sit with me for 5 minutes.  As I look back I realize how much I enjoy these moments with him.  I feel so blessed to be able to witness these moments.

Chapter 5 – #TeamEJ – Unlocking EJs Voice – 1st RPM Lesson

August 24, 2015

So, this was just after I had the amazing good fortune to attend Katie Anawalt’s workshops on RPM at the West Coast Communication Symposium put on by REACH (the incredible organization formerly known as WAPADH).  I had been reading about RPM ever since I read “Ido in Autismland” but honestly didn’t know if I could do it or if EJ would even sit still for a lesson.

The whole idea of video taping was really so I could get pointers from some of the awesome folks out there.  Now I’m just so glad I can look back on these.  I see things I could be doing better all over the place.  Like I’m supposed to be on his right side and I shouldn’t just let him copy type so he doesn’t develop a hard habit to break and also so that he is challenged to pull the word from memory.

This is one of the lessons from the workshop and I saw so many kids learning about eagles with their parents and I thought, “Wow, I wonder if we could do this”

One of the big messages from the symposium was that presuming capability is the least dangerous assumption.  It’s frightening to think of all the things that we aren’t teaching children with different learning styles simply because they don’t seem to be learning in the standard way.  One of the great things about RPM is that no matter what age you start at you teach to their age appropriate subject matter.  The fact that so many older students still have goals like “cat, rat, sat, fat, mat” and “the numbers 1-20” is really a shame.  If your brain is way past these concepts but your avenue to show the knowledge isn’t easy or being taught to you then you’d probably get awfully bored and frustrated and start having less pleasant behaviors.

It was not long ago that EJ would simply melt into a puddle of liquid on the ground, in the car, in the parking lot, in the store, at school or wherever he couldn’t get his message across.  Communication needs to be accessible to all.  I know I would not be pleasant if I had no way to communicate my needs, thoughts and opinions.

It is my hope that we keep trying to find the best ways to help EJ and all people with disabilities to reach for the stars.

Chapter 4 – #TeamEJ – Unlocking EJs Voice – “Dolphin” Drawing

Just 4 days after the Grand Opening of WRTS Whittier, EJ and his brother Christian were playing and I was able to capture this moment.  EJ started typing the words from Baby Neptune during Christian’s water polo scrimmage just a few days earlier.  I thought it was pretty cool that not only did he seem to associate the swimming with all the water animals but that when he would misspell a word I could correct him once or twice and then he’d be off and flying.  It was one of the first real signs that we could teach him correct spelling versus him being stuck on the way a word looked in his head or the way he thought it should be.

The one I remember most of all was when he typed “sestutele” and I couldn’t figure out what it meant until I shared it on Facebook and my childhood friend Michelle said, “sea turtle”.  Brilliant!  In this video just a few day later he spells it correctly.

EJ has always liked us to draw for him and I wanted him to see that all this typing could have awesome pay offs.  The second day he was typing I drew anything and everything he typed and wrote the word also.

This video holds a special place in my heart because it’s these brothers playing and learning together in our brand new gym.  You can see EJ run and jump around out of excitement but also to fulfill those sensory needs.

The bond of EJs siblings is truly something.  I firmly believe EJ has made us all better people.  We don’t sweat the small stuff.  We celebrate even the smallest victories and don’t dwell on set backs.  EJs sisters and brother go above and beyond the call day after day.  A special needs sibling is probably the best friend anyone could ever have.