When our son Niko was born, he was the sweetest, most beautiful baby. When we discovered Niko’s autism prior to his turning 2, we went through the most traditional avenues: ABA treatment at one of the best centers in the world. Outside of ABA therapy for 40 hours a week, Niko took occupational therapy, speech therapy, floor time, neuro-feedback, music therapy, equine therapy, and that isn’t even an exhaustive list. All of those resulted in zero improvement in Niko’s communication over seven years.

Then, quite by chance, we happened upon a book called “Ido in Autismland”. This book was written by Ido Kedar, a non-speaking autistic teenager that explained his predicament in such a way that we felt like he was speaking directly to our family:

“Experts looked at my outside deficits—eye contact impairment, hand flapping and social delays- and concluded that my insides were equally impaired.  They assumed I did not understand language, recognize my parents or have a thought more advanced than a toddler’s.  They supposed my brain could be molded in increments by drilling me on names and basic nouns, or by telling me to jump, or sit, or touch my nose-over and over. This was the educational model I grew up with. Now, I am telling you what I couldn’t tell my experts when I was stuck in my silent prison for so many years;  You were wrong.”

Because of what we learned from Ido, finally we felt a bit of hope. What if our son was like Ido? We contacted Ido’s mom, Tracy Hoberman. With Tracy’s help and guidance, we finally discovered a mode of communication that worked for our son. The same mode that had worked for Ido, a letterboard and pointing style, allowed Niko to convey his first message to us shortly after his first lesson.

Our son and many like him are imprisoned in bodies that don’t listen to their mind. Imagine being the only one who knows that you are cognitively present but having no way to communicate that to anyone.

What we have discovered in the last year is that Niko is not an anomaly. We have met many families like ours and have introduced them to this method of spelling to communicate and all of them were at different skill levels due to their motor deficits, they all demonstrated understanding and intellectual capabilities that were not discovered through any other means or therapy.

Since we made this discovery, reaching out to families like ours has become our mission. We greatly appreciate the opportunity to speak with you and answer any questions you might have. We appreciate you taking the time to hear our story.