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.
We have a lot of fun too!
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.
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 enterocolitisnever 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
Prayers, shares and donations are appreciated. If you can spare a few dollars go to, Aydan’s youcaring campaign or Send Bitcoin here: