Spelling2Communicate Y-E-S or N-O?
By Dara Berger
I couldn’t decide whether or not to be silent about what happened to my son. And then it dawned on me how unfair it would be if I didn’t share my story. As most of us know in the autism community it is easier to stay quiet, fly under the radar, this way we don’t catch the flack from some people that comes when you speak out about an injustice.
So here I go.
I had read JB Handley’s book “Underestimated: An Autism Miracle” a couple weeks before it came out, as he sent me an advanced copy before our podcast interview. Here is the interview with JB and his son Jamie about his incredible experience.
Like many people I could barely wait until the morning to call a practitioner to sign us up for this new and innovative therapy. I thought "this could be just the thing we need". My son already spoke but there was no initiation of language. This means he can answer questions all day long but will not initiate language on his own. It’s hard to form relationships and make friends without the initiation part. So I was beyond excited to give it a whirl.
I made an appointment over zoom with the woman who developed S2C. It is a communication method that uses a letter board in a very systematic way. The practitioner will read a highly engaging lesson and then ask a series of questions depending on the level of the child. Then the student will spell the word or sentence as their answer with a communication partner’s help holding the letter board for them. This can be very helpful for those with motor difficulties especially dyspraxia.
The session with her went pretty well and I was eager to continue. So I was paired with another practitioner in her practice. The first couple sessions did not go to well as I found it very uncomfortable. Then I took a ride to see two other practitioners, one in Pittsburgh and another in Westchester. Those sessions proved to be very helpful in jumpstarting my son as they were hands down much more talented than the person we were seeing. But we continued to work with the person remotely from VA each week as it just wasn’t feasible to keep driving to either of those two other locations.
We met with her every week for months and continued to practice multiple times a week. One thing they don’t tell you that is kind of annoying is that you have to keep buying lessons once you run out of all the free ones online, which happens pretty quick. You are “not supposed” to share them unless you do it underground, meaning directly in an email to someone you know. The practitioners don’t offer you any. These lessons cost $4-8 and they can only be used once. It is a hefty price tag when you practice around 5 times a week. You are certainly free to make your own but show me a mother with a child who has autism that can add lesson writing to her laundry list each week. I did notice that Reach Every Voice had a database that you can pay a flat fee to get a certain amount of lessons per month, which I was about to try out before things unraveled for us with S2C.
A couple months ago I noticed that my son was using a lot more speech in his lessons. He would answer the questions verbally instead of using the letter board. Now you can imagine just how excited this made me. Things were finally paying off I thought. But much to my surprise his S2C practitioner did not share the same enthusiasm as me. In fact, she blew it off and ignored the fact that he was doing this. Not only that, she pretty much discouraged his speech by ignoring that he said the answer and told me to have him spell it anyway. I stopped her and we spoke about it for 5-10 minutes. She kept saying that he just needed to get better at the letter board and I kept insisting this is every parents dream to hear them answer questions verbally on their own. This is what we are coming here for. It was obvious she did not agree. So I dropped it for the time being with her until I could get another opinion that counted.
I reached out to my son’s Speech Therapist to get some sound reasoning. Andrew has been around the block. I believe he has been a speech pathologist for over 40 years. He is very familiar with letter boarding and one of those very special therapists who actually presumes competence. He knows my son is incredibly intelligent and cringed when I told him a tutor last year asked my son what color shirt he was wearing. So I relayed to him what was going on with his S2C practitioner. He was quiet as he took it all in. I could tell that he wanted to be careful how he dealt with this.
Andrew is special in that he has seen letter boarding back in the 70’s when they did it in institutions. He has also recently seen a few young adults go on to college successfully using a keyboard. Finally he could not hold back and let me know that what she is doing is wrong. Dylan gave the answer verbally and he should not be made to spell it like he did something wrong. He felt that Dylan must have thought he did something wrong when he was made to spell it afterwards. After all wasn’t what he did the end game or should have been. Andrew and I left off that Dylan’s verbal answer needs to be accepted period.
I brought up my conversation with Andrew in my next session with I’ll call her Kara for amnonmity. Basically Kara blew me off and said this is how we do it and he needs to get better at letter boarding. Her answer and excuses did not sit well with me but I did not want to continue to use the session to argue with her in front of my son. Well not shocking Dylan stopped giving the answers verbally. Why would he when they were not being accepted anyway. This pissed me off to put it lightly. I was trying to decide if Kara was inexperienced or not too bright.
Life kept me busy over the next few weeks as the new school year was starting up and I had to get my daughter everything she needed for Middle School and gear up for Dylan’s sophomore year of Homeschooling. Then one day I saw a post on Facebook from another mom doing S2C who’s child was going to college and I immediately reached out to her. I wanted to find out all about her success. We got on the phone and had a really nice pow wow. She told me about these great online classes for spellers. I thought it would be a nice addition to our Homeschool curriculum. So I signed up right away for two classes. We took Ancient Civilizations and Cultural Literature. I think I loved them more then Dylan. The greatest thing about Homeschooling isn’t just that I get to teach my son all the things his other schools refused to believe he could learn but that I get to relearn everything with a brain that actually works because it is not on gluten.
These group classes were set up similar to his individual spelling class in that she reads us a paragraph from a lesson and then gives the students a few questions to answer. The spelling partner types the child’s answer in the chat area. Well during this first class to my surprise Dylan preferred to answer verbally once again and did so for the entire class. It was interesting that away from Kara this was his immediate reaction to speak. I listened to his speech therapist and honored every answer and did NOT make him spell it afterwards. He did the same thing in the next class we took. But when we took Kara’s group class Dylan reverted back to only spelling again. THIS WAS GETTING INTERESTING TO ME! So here I was with no choice but to speak with her again. And lo and behold she had the same reaction as the first time. But I told her that her answer wasn’t good enough and she had to speak with her boss (who developed the technique).
About two days later I received this email below from her. I thought it was important to share as she admitted to discouraging speech and saying that it is not their goal. She also makes the very big mistake in telling me that it is unlikely my son will ever use verbal speech as his primary mode of communication. i have highlighted the important areas for you to read.
The goal of S2C is to provide our students with a reliable, robust, effective means of communication. Speech may be a happy byproduct of this practice due to the increased neural pathways between speech and language, however it is not our goal. Of course I understand that you are thrilled with increases in reliable speech, as am I when our students start to gain more control over their motor and their bodies in any way, it will allow him to get some ideas across to people who are not skilled on the board, and that's great!
My goal is to increase his communication. Long term, it is possible to continue to see an increase in speech, however it is very unlikely that speech will be able to be his primary mode of communication. That being said, we certainly encourage you to continue to work on his speech in therapy. In our sessions we are working on the purposeful motor of pointing to letters on the boards in order to increase accuracy at each level. I confirmed with EV that she too, when a speller in the acquisition phase uses their voice to answer a question, has them spell it, just for practice. "Now let's use your arm!”
My suggestion is to reframe spelling (with or without speech preceding it) from a punishment, to fun, awesome practice on purposeful motor that will lead to more effective communication, regardless of through what means. At some point with our mega fluent spellers, when they do answer with their voice we will move on, not making them respell the word, however it's necessary to put in the practice to reach that point first. Initially, when working with a speller, we actually discourage them from using their speech while they are spelling, because focusing on the motor of pointing to letters while trying to speak is too much motor to focus on at once.
I was very clear about my reason and intentions for venturing into S2C. I wanted to increase my son’s verbal initiation of language. Why the hell did they take my money for six months and not mention that we would not be focusing on it. Even worse, they discouraged his speech when he used it. This I found reprehensible. Next she decides she is a prophet and knows what my son will do or not do in the future as far as communication.
Fortunately for me I recognized not only is she not that experienced but not so bright either. Needless to say I still had such a visceral response to her email. I was so angry I had shooting pains down my arm from my neck that I get with unexpressed anger. But I tempered myself and wrote her a couple emails explaining how upset I was by the choice of words in her email. No response came. I left a message for the owner of the center and got no response. I called again the next day and let the very nice assistant know that my calls would not stop. She finally returned my call. The conversation was useless and she was devoid of any emotion, which I told her was adding insult to injury. I got an insincere apology. I knew it was time to cut bait and that this was a waste of my energy. We left off that I wanted a written apology from Kara and that I would not be paying my remaining balance for traumatizing me.
I slowly released some of my anger with another email to Kara. She finally answered me with a passive aggressive apology. This was a first for me in an email. My husband who is a glass is half full person when it comes to dealing with people said “oh that’s passive aggressive”. So I decided it was time to let it go and move on.
I can’t tell you why it hurt so deeply. Is it because it reminds me that the people who were supposed to help and protect him ended up hurting him so profoundly and I was like a bystander watching it all unfold in slow motion. Was it because I spent so much time, money and energy for them to act so callously and not have his best interest at heart. Or that they were more concerned about their therapy being done the "right way" than what was best for him. I am not sure but I am better now that it has been a few days. I will continue to sort out the emotional part in the weeks to come. My freak out moment is gone. I won’t be crying or yelling about it anytime soon. I will do what I have done for 15 years - I will get up, dust myself off and step forward.
We will continue to work on his initiation of language. My son has great print and cursive penmanship. We do all kinds of creative writing to help put his thoughts on paper. His OT has him texting and emailing during sessions to use the keyboard, which he types well on. So I don’t know if we will continue with S2C. It’s hard to go work with another practitioner when I know they all receive the same training from the woman who developed it and will be taught the same as Kara.
My belief is she needs to be more upfront to parents about her communication program when it comes to those who already have verbal language or come up with a way to handle a child that is becoming more verbal in the sessions. It is great that the communication tool is easily accessible to all parents but it has to be adaptable to the individual child’s needs like any therapy tool.
If a surgeon opened up a person and found something unexpected, but continued to do the surgery the way they always performed it, then that patient might not have the best outcome then if they adapted to the individual situation.
S2C feels a lot like ABA but not in a good way.
My experience is not meant to dissuade anyone from doing S2C. I am elated for all the children and adults it has helped and will continue to. There is nothing sweeter than to hear a person who previously could not communicate has now found a way to get their voice heard. I encourage everyone to look into it and read JB Handley’s book.
But on the other hand there is nothing more devastating than to have a child who is trying to communicate and to have their voice ignored or squashed while I am paying for a therapy meant to increase his communication. I am haunted today when I reread the highlighted portions of her email.
I was going to be silent so I did not discourage someone that it could help and then I realized I had to make people aware of it’s pitfalls so another child or parent was not hurt in the same way we speak out about other injustice’s.
Dara Berger is the author of the book “How to Prevent Autism”. She hosts a podcast titled Every Choice Counts where she interviews a variety of well known health advocates and integrative practitioners about holistic health. Dara is a certified health coach that specializes in working with moms to be and their babies in order to help prevent autism and other childhood chronic illnesses. You can learn more about her at: https://daraberger.com/
I'd like to address another comment on this post characterizing this comment thread as containing "vicious attacks." I'm sure it felt validating to some readers to see someone offer that point, but personally, I find it ironic.
In this post alone, Ms. Berger uses the phrases ""decides she is a prophet" and "inexperienced/not bright" (2x each) to describe Kara; and "devoid of emotion" to describe the clinic owner. Were those insults necessary? Even so, they pale in comparison to things Ms. Berger said to multiple people at the clinic she's complaining about (it was not lost on me how she whitewashed that part in her article). Finally, they did not "take her money for six months" because, in her own words, she refused to pay for professional services already rendered.
I'm glad Ms. Berger reposted the email she received from Kara. I think reasonable people can agree that even if you don't like what it says, it was not disrespectful or unprofessional in any way.
Ms. Berger clearly feels justified in her actions because this was an upsetting experience for her. And I empathize with her emotional reaction from a place deep in my heart--we parents do not have an easy task and the emotional element is profound. But I still keep coming back to this: personal pain is no excuse for bad behavior. That's why we are the grownups. Ms. Berger is not a victim.
Posted by: Serena Andrews | October 08, 2021 at 03:50 PM
Before 1992 Dutch research carried out on Down Syndrome children showed that teaching those children how to read at the same time as remedial speech therapy somehow meshed those two skills together to anchor them in a child’s brain. Our English trained speech therapist used this research to good effect on our child “somewhere on the autism spectrum”. The Early Learning Centre (a chain of shops selling toys and some educational materials) provided sets of letters and cards. When tested by a child psychologist at nearly three years old that child demonstrated that it recognized random letters and went on to become a fluent reader. N.B At the time it was considered “politically incorrect” to use this method.
Posted by: CassandraJane | October 08, 2021 at 03:09 PM
This is ultimately a story of maternal instinct vs 'trust the experts'. Lord knows we've all been in Dara's shoes. It's also how most of us wound up here on this site. Dara, your son is so very very lucky to have you looking out for him.
Posted by: for Dara | October 08, 2021 at 02:51 PM
@ Nikola
What our community is missing is a battery of reliable psychomotor diagnostic tools. Without an accurate diagnosis, it is hard to prescribe a remedy. All of these methods rely on personal theory of a diagnosis which may or may not be accurate. Thus, it's a roll of the dice as to whether the therapy is appropriate or not. Also, some might have success with a therapy if given a longer time. Sometimes brain damage is permanent and there is no remedy. Because mine were the early victims of the "Age of Autism" I had no preconceived ideas about any of this because it was NEW. I knew of no other therapies other than speech and vision therapy. Two of mine had limited success with these. After that, I was on my own and had to rely on my power of observation of each child to figure out what helped them best. Home schooling was integral to this as they had my devoted attention 24/7. I could catch things early and adjust their curriculum and activities accordingly. Mine also did daily art projects and origami which further revealed clues to their abilities and thinking. Helping these injured children is complex and can be a life's work for some. My faith in Jesus is what got me through and was my guiding light. It was a rough and ugly path at times, but I never gave up.
Posted by: Emmaphiladelphia | October 08, 2021 at 11:47 AM
As predicted, you caught some flack and were pretty viciously attacked from people who thought you should just stay quiet and move on. I disagree with those people and I'm grateful to you and Age Of Autism for sharing your story. Too often we are told we should suck it up and swallow when we invest thousands of dollars and ultimately feel like we've been discarded by those in whom we put our trust (and our money). That's the 'unfair' part to me. Yes, this has been helpful to other people and families. You recognized that. What you brought to light is that just because this has been helpful to other people doesn't mean it's good for everyone. That's completely valid and it helps our community see the big picture when it comes to S2C.
Posted by: Nicola | October 08, 2021 at 08:22 AM
Wow, that’s a lot to unpack. A few observations, if I may:
1. This is Spelling2Communicate, not Speech2Communicate. To assume a primary goal of speech from this therapy is folly. So perhaps your expectations set you up for failure from jump street. Don’t seek a cardiologist if you’re looking for a gynecological exam; they may have basic familiarity, but it’s not their specialty.
2. You mentioned receiving S2C therapy virtually. Like perhaps our shared parent experiences with virtual school during this pandemic, it’s clear to see how virtual is inferior to in-person as a delivery method of instruction of any kind. Especially for any families just starting out, in-person is key. You would learn that the dynamic between a communications partner is so vitally important. It’s not just holding up a board, but a true partner who is necessary for emotional regulation, verbal prompts to break a motor loop, task initiation, and so much more. Parents need to be formally trained, and even so there are cases in which a new speller has an easier time with a practitioner than they do mom/dad. (Explanations for this include how parents may inadvertently bring their own skepticism or anxiety or emotionality into the dynamic, whereas an S2C practitioner is trained to bring only a calm and positive energy. Sometimes our internal near-desperate desire to finally converse with our kids inadvertently adds so much pressure to a new speller, adding to their challenge to control dysregulation.) I truly think you would have experienced a far better outcome if you opted for a local in-person S2C practitioner rather than expecting success after a few months of virtual.
3. If your son was already capable of verbal expression and that was the only means of communication you personally held in highest regard (would that be considered “speech-ist” to only recognize or respect verbal expression?), why did you pursue S2C as a therapy? You instead turned to a trusted SLP, who by your admission has very outdated exposure to letterboards from the 1970s, and who is credentialed by ASHA, an organization that actively denounces both RPM and S2C; this is the so-called trusted, expert advice you sought? (Again, I make reference to seeking a consult from a cardiologist…) I would also see it as an absolute red flag when a specialist passes judgement or slanders the clinical impression of another specialist, particularly one in a field for which he is unqualified. The most diplomatic, tactful delivery would have been appropriate—“From what you are telling me, that would not be my approach…” would be the more respectful way to offer a second professional opinion.
4. If your primary goal was task initiation, a hallmark challenge with kids with apraxia, I’m sure an OT or SLP could have (or should have) addressed this specifically in the years of intervention your son received prior to this.
5. Asking your son to spell his answer rather than say it is not a “punishment”; it’s the goal of S2C. (See misguided expectations in paragraph 1 above.) It’s practicing the gross motor required for letter boarding. It’s mylenating those motor pathways. To characterize it as a forced punishment is putting your own preconceived notions on a wholly appropriate therapeutic request. He was in a session with other nonspeakers, not verbally expressive students, so blurting out answers verbally is not what was requested during the session and it certainly didn’t demonstrate motor skills acquisition or body control. He was asked to spell his answer, period. Great, he had the right answer and he was fully engaged in the lesson, and that outcome could have been used as positive reinforcement toward demonstrating his ability to acquire the new skill of spelling it out.
6. I see nothing wrong with what this practitioner said. She didn’t “discourage speech” or squash your son’s voice. She merely said that in the S2C therapeutic setting, her priority is to encourage motor control via spelling. She didn’t shush him or silence him in any way! Again, that’s your negative lens. If he knew how to communicate via clapping out Morse code or sign language, she would still have focused on motor control and letterboard spelling!
Per her words that you felt compelled to quote and yellow highlight, she actually shared in your excitement, merely stated that speech is not the *primary* goal of S2C, and said for most S2C students it will not be a primary form of communication. (Again, did you or did you not sign up for SPELLING2Communicate? And if you only wanted speech as your son’s primary form of communication, why didn’t you just double-down on more SLP sessions?) It wasn’t a crystal ball prediction, but managing client expectations based on clinical experience. I personally would rather realism, as tough a pill as it can be to swallow, rather than false hope. I think we parents have had a lifetime of the latter.
For my nonspeaking kids, we have tried both S2C and RPM with Soma ourselves, and never did we expect verbal expression to be a primary output of either of these therapies. Like the practitioner “Kara” said, it may be a happy byproduct of the process but it’s not the goal! Certainly you can celebrate your son’s speech output across different settings, but in S2C the focus is on the motor and the letterboard. An analogy related to me is someone who is learning to juggle and recite a speech at the same time: it’s easier to focus on one task or skill at a time, especially a novel task/skill we are trying to acquire, rather than trying to do both simultaneously. Perfect each one in isolation first before you elect to combine.
7. I have to assume you’re unfamiliar with standardization when it comes to methodology. Whether we’re talking software code development or in clinical or scientific settings, standardized delivery and methodology is paramount. A clinician may have a personality you either vibe with or don’t, but the methodology they employ should be absolutely standardized. Every S2C practitioner should deliver S2C the very same way no matter where you go. Without standardization, you have no quality control or assurance.
You were essentially asking this “Kara” person to modify a standardized methodology to meet your parent requests (demands), and when she explained it was not possible, you got irritated. Just like you got irritated when you didn’t get a personal apology. (Maybe she didn’t feel like she said or did anything for which to apologize? Especially if you approached her like you did here in this post!) Or when you inferred tone from an email response (always dangerous to presume). Or when she didn’t respond to your concerns as quickly as you expected/required.
From an outside perspective, I just see that you didn’t vibe with her, you didn’t like that the methodology wasn’t tailored to your personal requirements, and you expected immediate response to your concerns like there aren’t dozens of other clients (or, you know, a personal life outside of the clinic) on her caseload. So she didn’t do what you wanted, how you wanted it or when you wanted it. And then you wrote what I can only characterize as a “smear piece” to tell the autism community how dissatisfied you were. It comes across as highly personal, inflammatory, and retaliatory rather than informative or helpful in any way. You conclude that it didn’t work for you, so just keep it moving and try something else like we parents always have done for years. No need to burn the place down on your way out, especially when you know for people like JB & Jamie Handley and countless others it’s been absolutely life-changing. It’s petty and unfair.
Believe me, I’ve got two kids of my own on the spectrum and I’ve been on this journey for as many years as you have. I know what it’s like to want the most value for your therapeutic dollars, and the need to “fish or cut bait” after trying different therapies for a given amount of time. But I feel like, in this case, your misguided or misinformed ideas about S2C and a fair amount of ego (“I say jump, you say how high”) have clouded your characterization of the therapy and your experience.
And I truly hope it doesn’t dissuade other families who are interested in pursuing S2C or RPM, because it could very well be the answer to their prayers and release their children from their silent prisons. That would be the real tragedy.
Posted by: Jill Janson | October 07, 2021 at 07:16 PM
Dara, While I appreciate you sharing your personal experience, it appears you are missing one key rationale behind the S2C modality.
KEY POINT: it’s not about speech, it’s about communication! The motor planning ability required to produce robust, purposeful, open-ended speech on demand is really high. In persons with any degree of apraxia or dyspraxia, the demand can be too high or close to impossible. S2C works to create and mylenate the motor pathways in the brain that are needed to get robust and reliable communication. Reliable communication is the ultimate goal, NOT speech per se.
If regular speech therapy worked, these kids with apraxia would be more verbal and more conversational. Unfortunately it doesn’t always work, and much of the time speech is unreliable and/or inaccessible to the child/adult with apraxia. So again, in S2C you are teaching them a new way to communicate. If verbal “language” is present and easier for the student, teaching the brain how to produce communication through typing will only strengthen that language once the spelling/typing skills are mastered.
We know from many of our spellers (like my son) that often times when they are able to produce speech it is actually unreliable. They’re able to tell us this via letterboards/typing, but not speaking.
This is a common issue for parents of minimal or unreliable speakers. It can cause pure confusion, hence why the office you visited in VA offers parent training, to educate parents on the rationale behind their ways of implementation.
With that said…. I understand your frustration with practitioners and have also been to several who were far more beneficial than others. Clearly with any profession, there are good therapists and there are better therapists. You have to find one whom you and your child connect with. I suggest a practitioner who values your insight and looks at you and your children as team members. I know you know our story from the book, but what most don’t know is that I had to find a way to make this “fit” my son, and when it did, he flew. Now he is 100% independently typing on a keyboard (like Jamie) and sharing every thought, opinion, frustration, question he has ever wanted to ask… with ease.
So while your SLP may be amazing, he absolutely shouldn’t steer you from the modality, rather the practitioner.
Also, it took me over two years of trying until I finally broke through and was able to communicate openly with my son as easily as his S2C practitioners could. So while it’s absolutely incredibly frustrating, I believe it’s worth the time, hard work and effort to hear your child’s true voice… with or without it coming from their mouth. ♥️
Posted by: Honey Wolters Rinicella | October 07, 2021 at 04:22 PM
Hi Dana Berger,
Thank you for writing about this.
It has been my experience also, that despite some extremely kind, helpful and understanding people along the way, you should also never underestimate the focused potential for idiocy in a blinkered professional.
Our all time worst was an occupational therapist assistant, who after we had negotiated a precious half hour once a week to work with my son's crippled fingers, pulled out a large quiet sack" put my son in it , closed the top, and pulled out a stop watch to see if he could "tolerate it" for two minutes. The look on my mostly non verbal, thankfully fairly easy going son's face ( is there something wrong with her?) was priceless. She was quite disappointed when I explained she was never ever going to put my son in a sack, and she was going to spend the half hour working with his fingers, which she seemed quite surprised about. Unreasonable parents... And our non verbal kids can't say what is happening.
Sign language, learning to read, and words when he could, helped us. The speech therapist cheered the first time he signed ball, and then said baaal as well. Yay for speech! ( It was ages ago for us, but for young folk, the signing time videos, and the letter factory videos can be useful.)
I hope you find a better practitioner who can integrate the board into a multi functional approach. And you never know; sometimes just reading an article like this might be enough to make someone realize they need to change their approach...
Posted by: hera | October 07, 2021 at 01:27 PM
It saddens me to hear anyone engaging in the "S2C vs. RPM" aspect of this conversation and saying things like "it isn't all that it seems." I have used both with my son, and I can personally attest that both will work. I believe that anyone bringing down any method that has demonstrated itself to be effective is ultimately harmful to all nonspeakers because their caregivers may choose not to pursue spelled communication as a result of the comments they read. That would be a tragedy. I have no interest in how your child finds communication, I only care that they do.
That being said, there are times when any of us selects a service provider in any profession and find that person is not a good fit for our needs. When that happens, it shouldn't be perceived as an indictment of the service; rather, it's an acknowledgement that the particular dyad/triad wasn't the right one. Assuming otherwise is like saying, "I don't like broccoli, therefore all vegetables are bad." It simply isn't true.
Regarding the charge for lessons, you bought those through Spellers Learn-not your provider. Spellers Learn is my site, and it is an independent business. Your provider did not profit in any way from you buying those lessons. I created the site to be a bridge between when a family needs lessons and when that same family becomes confident writing their own, it was never intended to compel you to always buy more.
I'm sure I speak for everyone reading this when I say that we want your child to find authentic, fluent communication; whatever form that might take. Finding the right provider for your family is part of that process. And all of us in the larger community of nonspeaking people and their loved ones has a great responsibility to cheer on the successes, so that more people around the world are drawn toward their own solutions. Don't we have enough detractors already without adding our own names to that list?
Posted by: Elizabeth Zielinski | October 07, 2021 at 12:33 PM
Thank you Dara, J.B. and Jamie for the fabulous interview.
Tears came to my eyes as I listened to Jamie's responses to getting a "key" to the door of his communication isolation. One of mine, who suffered from vaccine induced encephalopathy after getting his MMR schedule at 15 months (same vax schedule as Hannah Poling), had speech delay. This was in 1996 and I had no idea what had happened to him. His doctor explained away his 104 fever and lethargy (8 days post vaccines) as just a virus. He recovered, but had gut issues and delayed speech and meltdowns. By age two, he could say a few words, but screamed his head off frequently out of frustration with not being able to communicate. He pointed frequently and was obsessively fascinated with turning light switches on and off as well as the dishwasher and pushing elevator buttons. He also had a biting tic, his younger brother being the target. My doctor was clueless how to help and had no diagnosis. I was on my own. I will not even go into the story of his eight years older brother (born 1987, and got the "new" vax schedule) who screamed his head off for three months after coming home from the hospital. My doctor offered no help and said it was just "colic." He also had amblyopia in one eye, gut issues, and ADHD with learning disabilities. Again, I was on my own.
I helped my children as best I could through trial and error. My second born started private speech therapy at the age of three. He went three times a week for 30 minute sessions. I did therapy exercises with him at home on the other days. He slowly developed fluency in speech after about a year and a half. We were paying out of pocket, and my spouse said we would have to quit. I didn't want to, but had no choice. There was no govt. help available at that time. I used a home school curriculum, A Beka Book, which teaches classical intensive phonics and handwriting beginning in preschool. I believe this gave him the continued intensive practice he needed to improve his speech as well as giving him an excellent foundation for reading and writing. A nearby small private school used this same curriculum and he went there K-4. He further developed speech fluency. However, in fourth grade, he was still perceived as "different" and was not able to socially connect with classmates as he desired to. He would have terrible meltdowns the minute he got into the car when I picked him up. Some would last for hours. I decided to home school him (along with his younger siblings) for fifth grade through eighth. This greatly reduced his meltdowns and I could focus on his gut issues and had better control over what he ate. We were socially active with other home schoolers and did extensive travel and local field trips. We were very active in our church. These controlled social interactions really helped him and enabled him to continue to practice communication skills in a safe environment.
This son showed great talent in math and was able to teach himself computer programming on our home computer. In sixth grade home school he was writing code for a video game engine, because he figured out there was more money in it than developing video games. LOL! He was right. He was able to graduate from our local STEM charter high school with honors and earned a full scholarship to a top engineering school. He finished a computer science degree in three years, earned $40,000 with 3 summer internships with top companies, and was hired by a Fortune 100 company (they called him) in a career he loves. He is a totally independent adult.
Each child is unique. There are many paths to the same destination. I have faith that the Lord can direct our children on the best path for them.
Posted by: Emmaphiladelphia | October 07, 2021 at 11:45 AM
I am a speech pathologist in NH. I use a combination of teaching methodologies depending on the person in front of me. I call it Supported Communication, because it’s not just any one method. I have one man who will type anything that comes out of his mouth, regardless of context. It results in nonsensical jargon. When I ask him to suppress his speech, his typed words are eloquent. I then ask him to speak what he typed. I accept any reliable speech. I also see a 13 year old girl whose speech is rote and repetitive. When she types, she speaks each letter before she types it, and then repeats the entire sentence. My goal for each person is independent spelling and initiation of autonomous speech.
It’s pointless to use a one-size-fits-all teaching methodology. Every person is different. I learn from my students what their needs are, and go with that. The more control they have, the more effective their communication is.
One often-overlooked consequence of spelling/typing is evolution of the person’s behavior. My 13 year old student was highly aggressive before she learned to spell. Other therapists were frightened of her. Within a few weeks of learning to control her body to type, her screaming and hitting virtually disappeared. She is able to express her emotions now, and loves to type. Her mother reports a much happier home life.
I don’t use canned lessons. I take things off of websites like Wonderopolis or Ducksters.com and adapt them on the fly. No charge for this, and parents are free to explore these resources on their own.
I’m sorry your experience was disappointing, Dara, but please don’t write off all Supported Communication. If you want to have any questions or comments, you can reach me at suppcommserv@gmail.com. My website is supportedcommunication.com.
Posted by: Lisa Keller | October 07, 2021 at 07:43 AM
This is just a little bit of a tad and a titch just fab and fantastic !
I remember walking into an NHS Learning disabilities locked ward on a back shift ie 2- 10 pm ,
I asked the charge nurse? " Why is Jimmy walking backwards in a circle ? The answer was ,
Ach well ye see .there was a little bit of a tad and a titch of a major temper tantrum /.meltdown on the ward at tea-time last night , big disruption, with a fair amount of unbreakable broken glass tae get
swept up. with either a spade or a shovel?
But why is Jimmy walking backwards in a circle ?
Well ye see he is telling us that he is trying to make the clock work backwards to tea-time last night and he is telling us he is sorry for the disruption , so if he can make the clock work backwards , then the disruption will not happen the same way it did last night ?
Just how cool and slick was that for a bit of non -verbal communication skills and abilities ?
Just Fab Or what !
The first spelling boards I came across were called a Possim ? around 1984
That spelling board can still tell the Covid 19 Criteria and guidelines tae " Go Far Cough with It.s own accountability and responsability selvies !
The assessment standards are heading straight towards the gutter ? Or What ! Oh What!
We are professional coughing dodgers ! How can we serve your situation ?
Posted by: Morag Lyons | October 07, 2021 at 02:48 AM
I feel that parents should try everything and see what works better for their child.
My son is deaf and autistic (as a result of childhood vaccine injury), but he is now fully verbal, as a result of oral-deaf communication teaching by our Auditory Verbal therapist.
Surprisingly, teachers for the deaf may help your child to become verbal.
Not sign language teachers though - they have a theory that oral deaf approach impairs signing.
I am sorry for the disappointment, but maybe the problem is not a method - it is a practitioner?
Posted by: Irena | October 07, 2021 at 01:15 AM
We have been living with the gift of open communication now for almost two years and I could never do justice to how positively S2C has impacted our life and, most importantly, Jamie's life. Lately, at Jamie's urging, we have shifted our attention to helping Jamie learn to spell independently, which involves putting a keyboard in a "card;e" where it sits kind of upright but Jamie is the only person involved with the typing (it's connected to an iPad that provides the output).
With this new challenge, I have been reminded of the "seesaw" that EV explained to me back when we first met with her between motor and cognition. Because the motor demands of independent typing are so high, we have pulled back on the cognitive demands when we practice, so Jamie focuses more on just spelling known words and answering questions from lessons. Only recently has he begun to communicate openly while typing independently, and I credit the patience he and his therapists showed to helping him build the pathways required first.
Since the publication of our book, I have heard from dozens of families who have experienced the joy of open communication with their children and the stories of how life-altering this experience was for everyone. While Jamie is a non speaker, it's been my understanding that unreliable speakers can benefit equally from S2C.
I only want the best for Dara and her son. I think a combination of miscommunication and mismanaged expectations have led to this situation, and I hope it can be resolved. For Andrew, I hope he can communicate openly with this family, whether through speech, a letter board, or both. I think the advice the S2C practitioners were providing was intended to try to manage the motor demands on Andrew, not stifle his desire to talk, and I still believe S2C could play a role in helping Andrew and the Berger family reach their goals. As I mentioned, I'm inundated with parents reporting success and open communication, may many more of you have the experience we have had.
J.B. Handley
Posted by: J.B. Handley | October 06, 2021 at 07:15 PM
Dara- I am sorry for the pain and frustration you and your son experienced. I think most of us can relate in some way or another.
What people need to know is that Soma Mukhopadhyay, the inventor, creator and REAL mind behind this method, always has speech as an end goal for her students. She always has students verbalizing during lessons. When my son saw her in April 2013 she said the goal for him is speech. I was happy and surprised as his speech was unreliable and inarticulate. Eight years later his speech has improved a great deal but he still mainly spells for communication because that works best for him. He is now a junior in University and an English major.
Let me tell you what else happened at that first session in April 2013. Soma asked if we wanted to join 5 other families who would meet with her in our area, once a month for 18 months. We were allowed to bring people to be trained by her to those sessions. Guess who I brought to be trained? EV. I had hired her about 2 months previously to help me create a homeschool program for my son. I asked her to join my Soma sessions so I could begin RPM for my son.
Fast forward and EV has taken what was invented by Soma and renamed it and marketed it S2C. Unfortunately, in the new rebrand of Soma’s method a lot has been compromised. Soma’s lessons are always individualized and have multiple components that support the different sensory channels of each student and are oriented toward the individual motor challenges specific to each person. Her lessons are never one size fits all and she would never just read a paragraph of information and have a student answer questions while someone is holding a board for them. RPM is a complex teaching method that is always evolving and Soma is nothing short of a genius. She does not have the marketing skills, nor business acumen that SC2 has going for it, but believe me, you would not have had an experience like this under her or one of her certified practitioners.
In the past I’ve chosen to look at the bright side of S2C, which is that more people are getting an opportunity to learn to spell to communicate. But your post made me want to alert people to the fact that SC2 is not all that it seems. I wish the very best for you and your son, and am thrilled he is verbalizing when answering questions
Posted by: Brooke Potthast | October 06, 2021 at 03:07 PM
I would be remiss if I didn't step in here and agree with the commenters who recommended Soma Mukhopadhyay and her RPM method. My son is completely non-verbal, but Soma encourages anybody who can verbalize the letters and/or words that they're spelling to do so as they point; she would never stop them from verbalizing, as functional speech is always the ultimate goal for those who are able. She also encourages handwriting and keyboarding, as her son, Tito, prefers both to the letterboard. My son is 25 and first met Soma at 19, and to say it's been life-changing doesn't begin to describe what this has brought to him and our whole family. I highly recommend it!
Posted by: Patricia Costello | October 06, 2021 at 12:12 PM
I am sorry this happened to you. Like my friends, who I see have commented here, I encourage you to try RPM. We just did 3 days with Soma and she barely used the letterboard at all with my child. My daughter spelled instead with her mouth, including open answers. Soma also worked on having my daughter answer with full words. We have also been working with Soma's reading program so my daughter is starting to read aloud and find answers in the text. There is so much to RPM "beyond the board" since the board is just a prompt in RPM. Please don't be discouraged!
Posted by: Meredith Altschuler | October 06, 2021 at 11:20 AM
This sounds like a very frustrating experience and I know you may not want to try anything else at the moment but I really encourage you to try RPM. S2c is just a knock off version of RPM, there is a lot more depth to RPM. Soma would never discourage speech and in fact has written a book on working with verbal students because it can be so different from teaching non-verbal students and it is very important to adapt to what the student needs and not be so rigid: https://www.amazon.com/Developing-Expressive-Language-Students-Prompting/dp/1478771194/
There are teachers all over the US and most offer online consults: https://www.halo-soma.org/teachers-1
Good luck with everything!
Posted by: Lisa | October 06, 2021 at 10:32 AM
I'm sorry you had such a negative experience with S2C, but since you say the beginning went well I would encourage you to check out Soma Mukhopadhyay and Rapid Prompting Method. Soma always works towards moving off the letter board. She is helping my son, and many others, by encouraging reading, body control, building hobbies, writing, typing AND speaking. She wrote a book called "Developing Expressive Language in Verbal Students with Autism Using Rapid Prompting Method". She has written other books about Developing Motor Skills and Building Sensory Tolerance. RPM has been life changing for my son. You can also find lots of RPM Facebook pages that provide samples and resources for lesson plans. Soma has also written a Curriculum Guide, and Lenae Crandall has books full of lesson plans. It does not have to be expensive. Best of luck on your journey.
Posted by: Beth Callahan | October 06, 2021 at 10:20 AM
If I could get an apology & a refund for everything we tried to help my son with little or no success I'd have a lot of apologies & I'd be rich. :)
It would be nice to be able to know ahead of time which kids will respond to which treatments. Unfortunately we're not there yet.
We have to just keep trying what we think is feasible. My son is 25 & we just started on the S2C journey over the summer. He is a non speaker so we won't have to worry about him blurting out answers unless of course we are lucky enough to experience a miracle that brings him speech.
Dara does your son have apraxia? I'm not a S2C expert by any means, but it's my impression this is for kids who need help coaching their motor to become fluent on the letterboards. When we went to our initial training EV asked if she could use my son in training videos because he's so apraxic. If your son is already typing with little assistance & minimal or no errors maybe this was the wrong therapy for him? I'm sorry you had to learn the hard way it wasn't right for him & you were unhappy with how it was handled.
I do thank you for sharing your experience. People certainly have a right to share what they've experienced & we can all learn from it. Bu for those of us who's kids are horribly apraxic & dyspraxic I think this is a worthwhile endeavor.
Posted by: Andrea | October 06, 2021 at 10:04 AM
There are a complex of tragedies here - autistic people don’t have a single kind or depth of cognitive impairment and they will not all benefit from the same therapy. I find that virtually all the professionals are hopelessly rigid and they only do what they do (and usually when it does not work they blame the parent). Frankly, if they are not getting any purchase on anything and just being aggravating they ought to back off, but it never works like that and it not what they are paid for. Never tried this therapy but the tale is hopelessly familiar.
Posted by: world without end | October 06, 2021 at 09:28 AM
my son can verbalize TONS of words and muscle memorized phrases but to say a sentence of his own, spontaneous unique thoughts is beyond frustrating for him.
letter boarding (we learned rpm) is a miracle, and after watching Jamison's video it all makes sense - apraxia or dyspraxia of the small muscles that their eyes and mouths need to coordinate and the entire body for self-care and other skills. Woah,
I can't begin to imagine how frustrating it has been for my son who also has intermittent explosive disorder. The ignorance of his true challenge (which is motor based, not comprehension) has made that frustration much worse.
I thank GOD for ALL the people teaching letter board communication, because my son had to wait until 18 years of age to begin learning due to I had no idea how to introduce and start using that method. We are now transitioning to ipad and keyboards, he is 25. It is slow and tedious, but I love every single word he spells out, even about his extreme hate of autism and how stupid it is.
Posted by: Tara McClintick | October 06, 2021 at 08:32 AM