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/