To The Light at End of Tunnel – We’re Coming In For Landing!!
Looking back, I probably knew by the time my beautiful boy Z was about 3.5 years old that his development was proceeding “different” from that of same aged peers. But he was my first child, and as he was talking, as he had some eye contact and as he was forming some relationships with people, my discomforts around his extreme tantrums, his aggressive outbursts, the prolonged night terrors, his obsessions with construction vehicles, his odd use of language, his difficulties with even basic self help skills, and his lack of interest in truly playing WITH other kids were attributed by a variety of medical professionals to Z “just being a boy.”
In the summer of 2003, when Z was 5, things spun horribly out of control. Z’s tantrums became so extreme, his aggressive outbursts so numerous, his mood swings so unpredictable, and his hyperactivity so distracting and destructive that it became very difficult to manage Z at home and impossible to manage him at his pre-Kindergarten program. After a particularly challenging week, I finally had enough and pursued an independent neuropsychology evaluation.
In February of 2004, just 2 months shy of his 6th birthday, Z was diagnosed with Asperger’s Syndrome, Non Verbal Learning Disorder, anxiety tendencies, and “maybe ADHD”. Subsequently, we added Sensory Processing Disorder, Central Auditory Processing Disorder, bipolar tendencies, vision based processing dysfunction, Executive Functioning Deficits, dysgraphia, a bunch of learning disabilities, and a whole host of other neurology based “dysfunctions” to the alphabet soup. At the same time, Z’s physical health, which had been fragile from birth, continued to deteriorate due to never ending bouts of vomiting and diarrhea, constant respiratory infections, high fevers, ”mystery” infections, and “total shut-down” metabolic crashes. He was literally wasting away, and traditional medicine had no answers to offer beyond the “Well, all his test results are normal, it’s probably just a virus”, or, “Well, he does have an autism spectrum diagnosis, it’s probably behavioral” brush-offs.
I don’t even recall how it happened, but during one of my many, fueled by desperation to help this beautiful boy of mine who seemed to be programmed to self destruct, internet searches, I stumbled across the work of Dr. Doris Rapp. She talks about links between physical illnesses, behavioral difficulties and food intolerances; and from there I discovered information on the Feingold Diet, Casein Free/Gluten Free Diets and the DAN! (Defeat Autism Now!) protocol – and pieces of Z’s puzzle started to unveil themselves.
I started overhauling Z’s diet in June of 2004, and had my first appointment with a DAN! Doctor in July of 2004. An extensive battery of medical tests was conducted and a whole new list of “dysfunctions” and “insufficiencies” was collected; Celiac’s Disease, a long list of IgG food intolerances, gut dysbiosis, immune system dysfunction, detoxification dysfunction, pancreatic insufficiency, metabolic/mitochondrial dysfunction, fatty acid digestion dysfunction, etc. etc. Although Z’s “autism” by many would have been considered “mild” (after all he “only” has Asperger’s), there was so much other “stuff” going on that his quality of life, and that of our family, were significantly impacted. Just prior to starting biomedical interventions with Z, I came across a scoring instrument developed by the Autism Research Institute. I completed this scoring instrument, the Autism Treatment Evaluation Checklist (ATEC), for Z, and his score came in at 101 (the higher the score, the more “impaired” the subject). Half the “points” fell in the “Health/Physical/Behavior” category. My poor Z was a mess, developmentally, cognitively, behaviorally AND physically.
The dietary interventions part of Z’s DAN! Protocol worked well for him. The various vitamins, supplements and medications implemented to help address Z’s various medical problems less so. I just couldn’t seem to get to the recommended dosages – he needed to start at such minute fractions of the recommended dosages, these were his very fragile system could handle. A positive response would then be achieved for a week or so, and then the bottom would drop out again. Some supplements, despite months of “trying to push through things”, Z just could not tolerate. And despite extensive dietary changes and loads of digestive enzymes, little permanent change was achieved in Z’s gut problems. We were living on the “one step forward, two steps back” roller coaster.
In late July of 2006, when Z was 8, we hit another crisis. Z’s Clostridium Difficile and Candida infections had flared once again and he was put on a combination of Flagyl and Diflucan. While I know of many kids for whom this particular combination works very well after getting through the initial die-off period, Z deteriorated rapidly. He had several back-to-back total metabolic shutdowns and mentally something just *snapped*; he had several psychotic episodes, with one particular bad one resulting in him almost drowning his younger brother. I had been able to hold off on putting Z on psychotropic medications so far, but I was running out of options…
I had become aware of Dr. Yasko’s protocol in May of 2007, but hadn’t pursued. My interest in Dr. Yasko’s protocol resurfaced and I started Z on Step 1 in August of 2006. Within a few weeks of just basic Step1 supplements, Z calmed down considerably. I redid his ATEC score, which now came in at 43, with huge improvements in the “Sociability, and Sensory/Cognitive Awareness” categories (and I do attribute these gains to the bits of the DAN! Protocol we were able to implement). However, we continued to score many points in the “Health/Physical/Behavior” category. Z’s genomics profile came in late August/early September 2006 and contained many clues and explanations for his continued difficulties.
After the first few “oh my, this IS nice” weeks on Step 1, detoxification started. Poor Z had viral, bacterial and metals debris coming out of every body orifice, and then some. He was one sick and miserable little guy, and oh boy, did we see some crazy wacked-out behaviors.
But contrary to past experience, this time whenever there was a “break” in the crazy behaviors, I would see glimpses of a very different Z. One of the first things that started to happen is that Z would actually interact with his younger brother (beyond using N as a prop in whatever playbook Z had running in his head), he allowed N to physically touch and then hug him (I remember almost fainting the first time Z reciprocated one of N’s hug attempts with a counter hug, instead of a snarl, a kick or an attempt to bite). In October 2006, after about 2 months on Step 1, Z’s ATEC score had dropped to 28, with wonderful changes across the board in all categories (including the “Health/Physical/Behavior” category).
We stayed on Step 1 for almost 11 months, and these were 11 rough months with many ups and downs. But the ups were so GOOD, and gave me the strength to keep going. Z’s true personality started to emerge, other therapies I had in place (OT, AI, school interventions) started to generate great changes, Z’s relationship with his younger brother and other people in his environment started to develop and evolve. Z became less rigid, more independent in many self help skills, he learned how to throw a ball and he learned how to swim. His physical health improved, he missed less school time, and when he was in school, his “uptake” of what was taught seemed better. Our home life became less “just waiting for the volcano to blow”.
Z started Step 2 in May of 2007, and looking back, I should have kept him on Step 1 for a few more months. The summer of 2007 was INTENSE – I thought I had seen crazy detox behaviors before, but I hadn’t seen anything yet. But, just like during the Step 1 detox, whenever we caught a break, new skills started to emerge, cognitive awareness increased, his use of language changed and became more natural, certain persistent health problems started to improve. Cumulatively, life with Z became more manageable, I no longer felt like he was a ticking time bomb ready to explode. I found myself no longer constantly physically inserting myself between Z and his younger brother, ready to avert a kick, bite or blow. We were able to come out of “DEFCON 1” mode. We were able to have little family outings, Z was doing better across the board in school, he started to GROW AND GAIN WEIGHT, kids started coming to our house for play dates, we were able to initiate night time potty training.
In September of 2007, about a year after starting Dr. Amy’s protocol, Z’s ATEC score came in at 17. An incredible drop, and people outside of Z’s direct environment started to notice the changes too. For the remainder of 2007 and for all of 2008, we continued to work away at Step 2; carefully layering in one element at a time (“slow and steady wins the race” is definitely a necessity for Z, as he tends to react quickly and intensely, especially to those supplements his body really needs).
I think we started elements of Dr. Yasko’s “Language Support Program” in May of 2008 (which I realize sounds a little funny; after all Z has always been very verbal), and this is when his social skills, his ability to read nonverbal communication and his social use of language really took off. He started making friends, he became more integrated into the class social scene. He started attending school parties and had an absolute blast doing so! Over the summer of 2008 he had his best summer camp experience yet. The camp counselors were all just blown away with how present and smack dab in the middle of everything he was.
It is now April 2009, and Z has been on Dr. Yasko’s protocol for 32 months. We continue to be in Step 2, slowly chipping away at persistent gut and mitochondrial issues. Behaviorally and cognitively Z is LIGHTYEARS from where he was in August of 2006. LIGHTYEARS. He is slowly but surely moving out of autism territory, and we are making great headway in addressing his ADHD and LDs as well. Z is very popular with his class mates and fully integrated in a variety of in and after school activities. School personnel who worked with him since Kindergarten year cannot get over how much he has changed. Z and his younger brother now have a very close relationship; they can’t get enough of being together and doing stuff together.
Z continues to receive services under an IEP, but those services have changed much. The focus has shifted 180 degrees, from heavy on behavioral and sensory regulation interventions to a more academically focus (to help with the reading and math LDs). He “graduated” from receiving academic support in the Pragmatic Learning Center (geared towards kids on the spectrum) to going to the Resource Room (geared towards kids with LDs, but with expectations for robust and age appropriate social skills). In November of 2008, Z started an intense educational intervention program to remediate his reading and math LDs, and he is FLYING through the program. I think he is now starting to outgrow the Resource Room too. I redid Z’s ATEC score in January of 2009, and his score has gone down to an incredible 8!!!
Two weeks ago, Z had a pizza party to celebrate his 11th birthday. I had to “cut him off” at inviting 14 kids, I’m sure he could have come up with a longer list of friends he wanted to ask over. So on a Saturday afternoon I found myself with 10 boys (including Z) in the 10 – 12 year old age range running through my house. Z was completely and totally in the middle of the pack. I don’t know if these kids (all awesome kids by the way) “know” about Z’s challenges. If they do know, they simply don’t care. Z does certain things a certain way, and as far as they’re concerned that’s just “Z being Z”. From their perspective, Z is simply “one of the guys”, and they treat him as such. I hardly had to do a thing; just provide food and drink for the hungry horde, stay out of the way of the flow of the wild boy games, but be available to patch up scrapped knees & banged up shins, provide ice packs for bonked heads, peel a kid or two out of our attic rafters, etc.
It was quite an experience to just sit back and watch the (good) mayhem unfold. I mean, really, think about it – from almost drowning his younger brother during a psychotic episode in August of 2006 to being “just one of the guys” in a completely, age-appropriate, pre-teen boy party in my house in April 2009. What a ride…
Z will be graduating from Elementary School in June, starting Middle School in September. And while not that long ago it would have been fairly straightforward to put a suitable program together for him, because he continues to acquire and master a variety of skills so quickly, I continue to have to adjust, make changes, recalibrate. He sure keeps me on my toes, and it’s a problem I gladly have.
We are not there yet, there are some stubborn residual health issues that need more work (and whenever those issues flare, I see a return of certain “behavioral issues”). We’ll keep plugging along, slow and steady, for as long as it takes (and if it takes a life time, we’re OK with that. Life, right now, is pretty darn good and quite manageable)
In August of 2006 I did not know what was going to happen to Z, what his life was going to look like. But all my instincts told me that the track we were on was not going to have a good outcome. Now, in April of 2009, once again I do not know what is going to happen to Z and what his life is going to look like. But this time it’s a “the sky is the limit” feeling. I always knew Z had tremendous potential, and I cannot find the words to describe what a thrill ride it is to see that potential start to come out.
Two comments in closing. First, Dr. Yasko’s protocol takes time. You cannot hurry things. Trust me, I’ve tried, things got too crazy, and I had to backtrack. Also, the gains Z has achieved over the past 3 years are not due to Dr. Yasko’s protocol alone. We have a ton of behavioral, sensory, educational, remedial etc., programs in place as well. But Dr. Yasko’s protocol provides a solid foundation for Z that allows the other programs to take hold.
Secondly, in Fall of 2006 it became very apparent that Z’s younger brother N was also dealing with a long list of medical health issues. He started showing some signs of Sensory Processing Disorder. I started N on Step 1 of Dr. Yasko’s protocol in December of 2006. Today, N continues to be on Dr. Yasko’s protocol as well, and he is healthy as a horse (while detoxing especially lead like crazy). He is completely neurotypical, he is having a GREAT time in Kindergarten, hitting a variety of developmental milestones early. He is a little social butterfly, thriving on interactions with people in a variety of settings. I have no concerns what so ever for N – he is doing just fine.
Words cannot adequately express how grateful I am to Dr. Yasko, all the wonderful people that work with her and all the amazing parents on the parent board. You ALL helped me make what is happening for Z and N possible. You have given me the tools and means to give my boys the best possible chance at a bright, happy, healthy and full life.
Petra C Smit , Mom to Z and N April 2009