In December of 2009 Nicholas (Neeko) was diagnosed severely (nonverbal) autistic. He was nearly 3 years old. At the time of his diagnosis I was told that his prognosis was very grim and that he would probably be institutionalized by the age of 22.
Even in my ignorance, never having any experience with autism at all, that felt wrong to me. Neeko had a primary drive toward verbal speech. He had always tried to speak, but what came out was unintelligible.
With his low functioning autism diagnosis Neeko was quickly funneled into the school and medical systems and marked as profoundly impaired. I could not access speech services due to my limited insurance and finances at the time.We ended up with State funded ABA (though he at best only had mild behaviors) and school providing his only speech services.
Just after Neeko’s 4th birthday we were lucky enough to have a trip to CLASS INC. in Tacoma, Washington, and a full language assessment with Paula Herrington, gifted to us. Neeko was finally given the proper diagnosis which was CAS or Childhood Apraxia of Speech. In that assessment he was given access to various AAC devices and began navigating on those devices immediately.
Neeko was invited back for intensive AAC training and SLP therapies. Nearly every part of this was donated and funds were raised on his behalf. He worked with Class Inc. for 6 hours a day, 5 days a week, for 3 full weeks total.
Every part of that experience was aimed at communicating! In that setting Neeko and I saw that he indeed had amazing emotional awareness and depth and a great deal of things that he could contribute, even as a “non verbal” child with an LFA and low cognitive label. He developed a place within a great community.
We stayed on Vashon Island for those three weeks. Even when Neeko was not in “therapy” there was work to be done constantly. Navigating the community gave us chances to build skills on his device. Being away from everything familiar kept us from falling into old comfortable rhythms, so we got to strengthen what he’d learned even in our leisure time.
So what did we get from our experience? Neeko was treated with respect and value was placed upon what he brought into the room at Class Inc. every day. My view of him was validated; and more importantly his view of his own importance and right to be, were too. I was given lots of individual time with therapists and learned how to program his devices!
What has stuck? Neeko continues to be able to make himself understood on his device. We have returned to Class Inc. a few times. We stay in touch with Class Inc. and they are available to us if we need help. They maintain a strong presence in our life.
Neeko does better in school at home. His behaviors are minimized because he can express himself better and his frustration is reduced. The classroom staff are able to focus less on behavior modification and more on education. Neeko can make himself better understood in his community and can function with a greater degree of independence than if he could not communicate at all. He stands a better chance of being employed some day.
We are incredibly grateful to Class Inc. and Raven McCrackyn and AAC4Me for all that it has given to us!