Autism: Hearing his voice a decade later

I’m a very private person usually, not the kind of person you’d meet who hangs my life out on the proverbial ‘clothesline’ of life for others to examine. But there are sometimes in life, when it’s necessary to talk about your journey, as hard as it may be, so that others can benefit from it. If someone didn’t tell us their story, we would have never found our path. So here’s our story…

(used with permission- by Jill Zotter, Autism: Hearing his voice a decade later,  first published on Medium)

Our son Tommy is eleven years old; he has ‘low functioning autism’ and is completely non-verbal. Can you imagine never being able to talk to anyone your entire life? Never telling a joke or a story? Never telling anyone how you are feeling? I cannot imagine living in a prison like that. I can only imagine the sadness Tommy must have felt everyday of his life. He also has trouble controlling his body movements; this goes from everything to controlling his impulses, flapping his hands, making noises, jumping, flopping onto the ground, pointing accurately, and self care skills such as dressing, brushing teeth, etc.. Tommy’s communication has been limited to direct commands on his ipad for years, this means one button for, “I need to go to the bathroom”, “I am hungry”, etc.

Having a child with severe autism is complete heartache. When your child is diagnosed, it’s comparable to grieving for the death of a child. You go from planning their entire life to canceling everything you were ever planning. There’s just hours and hours of endless therapy. It’s a barrage of therapists, doctors, and specialists in and out of your life and home. Most parents are barely hanging on due to being stretched too thin and living on little to no sleep. You lose friends and family because autism absorbs your entire life. I’m so thankful for those people that never gave up on us, who kept asking and inviting us even though we’ve had to say no to so many events.

We have tried everything to help Tommy, including nine years of daily Applied Behavioral Analysis therapy. Over time I began to think that sometimes miracles didn’t happen; that some stories just didn’t have a happy ending, and in many ways I gave up…never thinking about what would come tomorrow, only what the next hour or so might bring. I’ve always been that person that loved figuring out problems at work. Can’t figure something out? I’m your girl — I love a challenge. Tommy was my painful lesson that some puzzles in life just couldn’t be solved. It’s like God picked the one person who couldn’t sleep until she solved every puzzle to give an unsolvable puzzle to. No matter what I did, no matter how hard I tried to figure out what was going on inside of Tommy, I just couldn’t.

Then, in the later part of 2016, I heard about a friend of ours who was trying a technique called Rapid Prompting Method with their autistic son. They were having quite a lot of success so I decided to read up on it. I read ‘Ido in Autismland’ by Ido Kedar and the feelings that came over me as I read each word on the page were unbelievable. I felt like someone just hit me over the head with a brick or gave me the key to a box I had been trying to open for eleven years. ‘Ido in Autismland’ is the story of a non-verbal autistic boy who learns how to communicate via a letterboard using a technique called Rapid Prompting Method (RPM). RPM helps a student progress from picking between two or more choices, to spelling by pointing to letters on a letterboard, and then eventually by typing onto a device that converts text to speech. RPM’s first goal is academics. A second, longer term goal is letterboard communication and eventually typing. In his book, Ido explained everything that completely puzzled me about Tommy; why he did certain things, how it felt to live in his body, how he needs to learn, and how his brain functions. Rapid Prompting Method was invented by Soma Mukhopadhyay, the mother of an autistic child. I felt like Soma found a way in…like she hacked the impossible problem I had been trying to figure out. She found a way to get these kids voices out of their heads.

You can read her story here: Halo – About Us – Soma & Tito

Unfortunately, there aren’t too many RPM companies that exist in the US today, none in the area we live in—almost all of RPM is parent led. Also, insurance doesn’t cover RPM lessons. The more I read and educated myself about the children that were being helped by Rapid Prompting Method, the more I realized I had to do what every other completely insane person would do. I took a complete leap of faith. I quit my perfect, full time job and dove head first into educating myself on what it would take for me to implement RPM daily in our home. This was no easy task. For a parent, it requires a TON of self education, ongoing skills improvement, and daily lesson planning. The self education includes reading Soma’s books and watching RPM training videos. For the ongoing skills improvement, we meet with a RPM consultant who travels to our area monthly and works with us to make sure we’re on the right track. Daily lesson planning can be done by a parent or via various websites that offer lesson plans (many at a cost). For me it made more sense to prepare my own lesson plans since it was helpful if I knew the material well before teaching it and it was more cost effective. Tommy resisted at first, but over time he’s been realizing what has been happening. Slowly, we have been tinkering with the lock on his jail cell, and he’s been emerging from his silent prison.

If you want to find out more about RPM — here is a video:

RPM – how it’s helping non-verbal autistic children

I can tell you within two weeks of starting RPM; I couldn’t believe what I was seeing. I started with a kid who I thought didn’t even know the days of the week. I slowly made my way through the lowest curriculum, moving upward and discovered he was listening and absorbing everything his whole life. I began to realize within the first month that Tommy could spell — for how long he’s been able to; I had no idea. I saw almost nothing for eleven years and within weeks I couldn’t believe my own eyes. Six months later, our lessons are on a completely different level; topics can include History, Math, Chemistry, Geography, Astronomy, etc.

I would encourage parents to use their gut when figuring out what they think is best for their child. Parents receive a TON of advice and unfortunately, some people may talk you out of trying something new. It’s important to make well educated decisions after you’ve done the research yourself and to ‘go with your gut’; not always following the advice of others. Applied Behavioral Analysis (ABA) advocates are very skeptic about RPM. They don’t believe it because ABA advocates are dead set against prompting of any kind. I find this extremely odd. If someone asked me to pole vault, I would bet for the first one hundred times you’d be pushing my butt over the top of the bar. Isn’t that really the same thing? In our case, we have been teaching someone who has motor and visual processing issues how to overcome those challenges.

We started Rapid Prompting Method in the summer of 2017. It’s now December; Tommy’s skills are coming along nicely. In the beginning, he was choosing between two choices and eventually moved into pointing to letters using three stencils where the alphabet is broken down into sections. Now he is moving into using one combined A-Z stencil. Progress doesn’t happen overnight and some days are rougher than others; but progress does happen. He’s spelling words and some sentences. When asked recently, “What’s your message to the world Tommy?”, he spelled,

‘Do the best you can.’

I know this may not seem like much to other people, but to a parent who has been dealing with one button on an ipad that has a direct commands like, “I want a cookie’ for eleven years, I feel like I hit lotto every time he does something like that because it’s HIS voice.

I love this speech that Ido wrote about what it’s like to live with autism. The speech is here for anyone who wants to read it:

From My Speech – Imagine having Autism – by Ido Kedar

I now believe that miracles do exist. That sometimes God puts you on a path — not always an easy path or the one you thought you were supposed to travel on, but one that you can learn from and spread the message to others. I miss my ‘old’ path but for the first time in years, I feel full of hope for the future. I am so glad I took that leap of faith and I have no regrets. I always loved the saying; “Just because you don’t know your direction doesn’t mean you don’t have one”. Lots of times, it’s not the path you planned for yourself, it’s the path that helps others grow and learn from your experiences.

Tommy and his RPM consultant (aka Mom):

Jill and her son Tommy using a letter board for Rapid Prompting Method (RPM)
Jill and Tommy using Rapid Prompting Method RPM

Holland Poem:

 

Special Needs Poem:

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