What is it like to hear your 17-year-old tell you that his dream college is Harvard?
For many parents of teens across America, it’s probably so common they don’t give it a second thought.
For me it’s both thrilling and slightly heartbreaking. But mostly thrilling.
Why? Because against our wildest dreams and expectations, our autistic son Stone was able to communicate that this is one of his dreams with us last week.
As recently as four months ago – I honestly didn’t even know if he could earn a high school diploma.
As most people in our lives know, communication has been the biggest challenge for Stone his entire life. It’s such a simple thing that most of us take for granted daily but consider if you suddenly lost your speaking voice permanently. And let’s add that your fine motor skills aren’t quite as well defined as others so writing/typing is a LOT of work.
How would you communicate? How would you feel if others were making most decisions on your behalf because you were mostly unable to speak up for yourself? Or ask questions about how or why things worked the way they do?
I don’t know about you but I’d be frustrated as hell. And I don’t think I’d be very pleasant most of the time. But this is something that has always amazed me with Stone. He’s maintained a laid-back attitude and a great sense of humor the majority of the time.
In September I shared that he and I went to Southern California on a special trip to learn a new methodology that is designed to help people like Stone communicate – and open them up. I learned of this through a long-time friend who reached out over the summer to let me know that she was friends with a family who had a son very similar to Stone and was now able to communicate with his parents. The Dad (J.B. Handley) and his son (Jamison) wrote a book called “Underestimated” – that details their journey. Ironically, I had purchased the book months earlier but had not yet read it. After our conversation, I committed to reading the book the next weekend.
I read the book on an August Saturday morning and found myself crying at various points. It struck so many nerves it just felt raw. They had also tried all of the various bio-meds and supplements and different treatments – only to be faced with a 17-year-old who still couldn’t speak and was placed in an intensive education and “work experience” track that considers success a job stocking shelves in grocery stores or detailing cars at auto dealerships. And please don’t get me wrong – there is nothing wrong with these jobs or the programs built to support these students. But it is a very limited vision of potential when compared to most high school juniors.
J.B. and Jamison’s story was amazing and inspiring. Through S2C (Spell to Communicate) Jamison was able to communicate for the first time. In his first session with a practitioner, J.B. was astonished to see that his son could not only spell words (many that were challenging), but also answer questions about the lessons as well as questions outside the lessons. Jamison progressed so much that he was able to help write a chapter in the book – which also led to many tears on my part.
My friend Laura was kind enough to connect me directly with J.B. so I could ask questions and learn from him directly about the experience. He told me that the best in the business was “DM” in San Diego and encouraged me to book a ticket to see her – we’d be amazed at the results.
I shared this with Renee and she was on board. We had to try this with Stone and see how it goes. I admit I was skeptical – this was also a time we were struggling with Stone’s seizures and related meds (and brain fog). The idea that Stone would be able to communicate seemed far-fetched, and we’d been disappointed many times before when trying different treatments and therapies that we hoped would flip some switch.
J.B. encouraged and assured me that Stone would cut through the brain fog and that “in a few months you’re going to be thinking about what colleges he can apply to.” I laughed and thanked him – I would be happy with even the most basic of communication at that point.
There is so much more detail I can and will go into separately as I too now aspire to compile our own story into something – maybe a book, I don’t know. But there is so much to share.
At this point, I’m going to cut to the chase and get to the point you’ve probably already guessed. S2C has already exceeded our wildest dreams with Stone – and we’re still just at the tip of the iceberg.
Using letter boards I’ve also been able to read through lessons with him – asking him to spell words along the way as well as ask questions related to the topic. The lessons are specifically written and designed for S2C students – there are different levels of questions to ask based on their experience/mastery of spelling. We’ve probably gone through more than 20 lessons – everything from Native American Tribes in Washington State to Nerve Impulse Transmission. And he has absolutely crushed every lesson. We’re now moving on to books that cover math, history, and science.
But the real eye-opener came when I ventured outside of the lessons and just started asking Stone questions about things in his life. Could he name our current President? Vice President?
Yes and Yes.
How about the last 4 Presidents?
He got them all.
Who is my favorite NFL team? What about Renee’s?
No problem – he spelled them out easily.
I could go on and on but the depth of knowledge was and is simply astounding. When we first met with DM she told me that the experience would be “paradigm-changing” and that is absolutely right. All of the assumptions we had made about Stone – wondering and worrying that he wasn’t as engaged in our world or learning – have been proven to be totally false.
He just never had a way to share this knowledge or his thoughts. And now he does. There are now many nights he asks to stay up later than his usual bedtime because he wants to keep spelling (and talking).
We’ve been branching into more personal topics because there is so much I want to learn and know about him after all of these years.
I asked him what it felt like for him to be Autistic.
* I feel trapped in my head.
I asked if there was anything good about it.
* I have a great sense of humor (he’s right!).
What is the biggest misperception people have of you?
* That I am dumb.
Do you want to write stories or a book?
* Yes. I want to write a book about Stone. How I changed the world.
OK, I’ll close with one final discovery I made. Stone is amazing at math. Some of the lessons required him to do some challenging addition equations and he answered them effortlessly on the fly. I decided to push this outside of lessons and asking him to complete different equations – building up multiplication from single digits to double digits to triple digits. And he’s able to answer them instantly – using only his brain. We’ve shared this with his teacher and he was equally impressed (and shocked). We’re all currently communicating to see how we can now best support Stone’s educational needs (and capabilities) in high school now that we know his capabilities are much more than we all thought. It’s an exciting time.
Of course, Stone is one in a million, but he is also one of millions who have been impacted by Autism. I can’t help but wonder how many others are trapped in their minds – unable to share their brilliance, despite the best efforts of parents, therapists, and teachers. And this is the heart-breaking piece of what I shared above – knowing how close we were to Stone never having this ability to showcase his brilliance and personality. And also, having to suffer these past 17 years unable to share with us and the world.
I’ve videotaped multiple sessions of Stone and I working and spelling together and can share the link with friends/families if you’re interested in seeing how it works (the videos are unlisted on YouTube for now). Just let me know.
It goes without saying that there are more chapters to come in this story. And I also want to add that this shows the positive power of community – and reaching out with offers to help. Over the years so many of you have had suggestions or offered to make connections. Sometimes an apology has accompanied it “I’m sorry you probably already know this” or something similar. But the thing is you don’t know what others know or have tried so it really is the thought that matters. So we can’t hold back when it comes to helping each other. And never apologize when offering to help!
This is promising, indeed!