I've been contemplating over the past several months what should be the next step in Aydan's Road to Recovery. It is a daunting task to look at such a complex issue and decide.. what next?
Last December at this time I was returning from Massachusetts where I attended the week-long Son Rise program at the Autism Treatment Center. Thanks to fans, friends and family, I was successfully able to raise most of the funds needed to make the most out of the experience. I felt blessed and humbled.
A year into the program, I feel the most important thing I learned was to make time for Aydan. One on one time... And truly be present for that hour or so that we spend in the playroom. Focus only him and not on the goals.. Not on the fears of the future or the regrets of the past. It is our time together, that moment of mindful meditation where I join him in his world without judgment or agenda. Yes, we have goals but when I am in his world, isming (stimming) along side, I think not of these... I wait for an opportunity from Aydan with a gesture, a look, often a smile or a laugh to build something together.
But my question remains... What next? I considered another fundraiser to go back and further my Son-Rise education. But while, Aydan has shown improvement in engagement and communication as well as a significant reduction in anxiety, he remains pre-verbal and chronically ill due to his gut disorder.
We have been working on sign language for several years and Aydan continues to use a variety of signs, though it doesn't seem nearly enough to help him express himself. He is limited in his ability to use ASL due to difficulties in fine motor and it is a different language after all, to be truly fluent it may take several years. At 12 1/2 years old, I decided to re-consider AAC (Augmentation Assistive Communication) devices. We had tried this many years earlier when Aydan was still in school with a moderate amount of success but the school refused funding (big surprise). Now that he is homeschooled we receive no funding whatsoever from the school district, I looked to insurance, they never got back to me but I was able to find several scholarship opportunities through non-profits and Aydan was awarded two... that's TWO free iPad scholarships along with apps for communication. We've been working on it the past couple months and he's flying through the stages.
Having said that I have been researching the Rapid Prompt Method (RPM), a teaching modality for non-verbal autistic people. RPM has been able to help many of the most severe cases of non-verbal autism find a voice. This testimonial is from Ido, author of Ido in Autismland. He is a non-verbal young adult who has discovered his talent for communicating through his writing...
So now, let me tell you what I have. Autism for me is a severe problem.
How would you like it if your thoughts didn’t reach your body consistently? What I mean is that your thoughts are intact but internally neurological forces block them from your motor system so that messages get messed up, or ignored, or occasionally they get through. That can resemble not understanding, but it is not.
Nevertheless, the person cannot necessarily demonstrate intact thinking due to the motor issues that block speaking, handwriting, gestures, facial expressions, initiating actions, and more. So, smart intact people may spend years, or even their whole lives, in a body that traps them behind weird movements and unreliable, inconsistent responses. More than that, neurological forces may affect the sensory system, making sounds too loud or visual stimulation overwhelming. The frustration is compounded by autism experts who dumb down learning because of their belief that autism is a language processing problem.
When I was young I did ABA. No offense to any ABA people here, but for me it was a horrid experience. I found those early years of drills and reinforcements an exercise in boredom because I already knew the vocabulary they taught. I just had unreliable hands to point to the flashcards accurately. The baby talk, and most frustrating, the supervision sessions that never worked on my real challenges, made me feel frustrated and angry. Worse, the theories probably delayed my mom’s ability to recognize my true potential by several years, at least.
No offense to any Floortime people here, but I never got much out of my sessions because my play was so delayed when I was small. I craved more than the games I got. But my Floortime was minimal. I was drowning in ABA drills instead.
No offense to OT people here, but what I desperately needed was motor control and physical fitness, and I never got that. I got swings that spun me. Once until I barfed.
No offense to special ed teachers, but when I couldn’t show my intelligence, I still was thinking. But all I got was one plus one, ABC and the weather. My recommendation is to teach at least some age appropriate lessons and books, even before the student can express his thoughts. Who knows how much is locked inside?
My helpers were kind and well meaning, but the way I was taught missed my real needs for communication and motor control simply because the methods assumed I did not understand spoken language and therefore needed a rudimentary lifestyle.
What helped? Soma did. She gave me the ability to type on a letter board when I was seven through her method, Rapid Prompt Method, or RPM. This has progressed to a keyboard and ipad. Because of this, I am a general education student, college bound, on the high honor roll in AP classes and even learning a foreign language. I work out with a trainer and I hike and run and row on a machine at home. I also took piano lessons. These things helped me.
To all the professionals I offended earlier, sorry. I admire your devotion, compassion and caring. I challenge you to see your nonverbal autistic students differently and with high expectations for learning.
I take Ido's recommendations very seriously and regard him has a brilliant philosopher and thinker (which has grown increasingly rare in our modern times). Were he to have remained in his silent prison, what a loss this would have been to the rest of us to never hear his wise words.
Rapid Prompt (RPM) may seem very different from Son-Rise but many Son-Rise families use it and one thing they both have in common is unwavering belief in the affected individual's ability, no matter how 'severe' they may seem to be. Not being able to speak most certainly does not mean not having anything to say!!
I'll be continuing to look into this further and looking for more ways I can begin implementing RPM techniques.
At the end of the day; however, the vaccine injury always rears its ugly head and I am reminded of how far away we are from recovery. I know the word 'recovery' can be misleading or even offensive to some.. For me it has taken on different meanings over the years. I once believed it meant reversing the diagnosis of autism, I've seen this happen with other children and it is quite a miracle. Today, I see recovery as not the removal of a label but rather the ability to communicate with ease and comfortably. To live without chronic pain... I see Ido as recovered! Though he may appear to the naked eye as a person with severe autism who cannot speak, most of those who speak with ease don't have nearly as much to say..
Anyway.. the original question remains.. What next?
The next stage, I'm afraid is a return to the first... The vaccine injury, the severe gut disease that had my son living with chronic diarrhea for 2 years and that has caused us to change our dietary restrictions on average about 3-4 times per year. Each time an allergy is identified and kept under control a new one emerges, like a game of whack-a-mole. Then we think, maybe the food restrictions aren't helping and we shouldn't make such a big deal about it, only to find matters getting worse, old symptoms returning, excessive weight gain and so on... Some days might seem okay while others are a non stop effort to try to figure out what is wrong... Is it a migraine... Is it your stomach... If so, is it hunger or gas or cramps or what... The inflammation caused by the autistic enterocolitis never seems to want to go away, at best it appears to be playing a game of peek-a-boo.
If we care to make the most of our Son-Rise program and implement RPM, (which of course I do), we must address the chronic pain. I can only imagine the feeling of trying to work, learn and play only to be hindered by illness.
So, I made an effort to get us back to Austin and make a visit to Aydan's GI specialist and MAPS doctor at the Johnson Center. The Johnson Center does offer partial scholarships for families in need and we were able to get funding for our trip through Miracle Flights (yes, a plane... A little scary, I know but we'll make it through). Since we are fortunate enough to have friends and family in the area, lodging and transportation is also covered. We will be accepting donations for the remainder of our clinical visits totaling 3 per year (1 in office, 2 via phone / Skype) in the amount of $415 as well as another $400 for testing, on-going supplements and/or dietary changes as needed.
We can do nothing to change what has been done but we can look forward with solutions in mind. May we all continue to pray for Aydan's 'recovery'. I pray one day, like Ido, he will be one day released from his silent prison.
I am an autistic guy with a message. I spent the first half of my life completely trapped in silence. The second - on becoming a free soul. - Ido
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-If you love someone with autism and want more information on the grants and scholarships mentioned in this article, check out: Holiday Giving… The Truth About Autism Speaks and Non-Profits!
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