Sunday, December 23, 2018

“Home” for the Holidays with Autism

I was listening to “No Place Like Home for the Holidays”, with all the cozy and warm feelings it evokes and thought nostalgically how nice it would be to be in my childhood home surrounded by family members rather than an ocean away. But that feeling didn’t last long.

My family hasn’t spent significant time with Ryan since he was two years old and not all that different than any child his age. They don’t understand what life with Ryan is like and in reality, don’t want to hear about. They’ll ask how we are, but they don’t really want to know. The things I am immersed in every day are the kinds of things that make people uncomfortable. On the rare occasion when I decide to unburden myself a bit and answer honestly when asked, “How are you guys?”, I hear either awkward silence or an uncomfortable “oh”, or even embarrassed laughter.

Family and friends implore us to move closer to “home” and some offer to help with Ryan—I’m not sure what that means to them, but I realize all too keenly that they have no idea the level of care my son requires. They tell us to come and stay with them so we can visit during the holidays, and when I explain that it’s very stressful to be with Ryan in an unfamiliar setting with a lot of distractions where he can easily slip off into a dangerous situation, they say they’ll watch Ryan so we can relax and visit. 
Half of all autistic children elope from a safe setting.
This is most common during holidays or on vacation.
Jayliel's body was found two days after he eloped.

What they don’t know is you can never turn your back on him for any number of reasons. He has no sense of danger and is what his teacher describes as an “adrenaline junkie”, he wanders and elopes, he bolts into traffic toward moving vehicles, and in a new twist has begun eating raw meat, to include chicken. Salmonella here we come!

On a scale of one to ten, watching Ryan is at least a 13 and that’s on a good day. He perseverates and truth be told, that can make even the patron saint of patience go crazy. As I write this, Ryan is playing over and over again (at varying speeds) the first note of the Spongebob Squarepants theme song…”Whoooooooo…”. Imagine this played repetitively for hours—enough to make anyone more than a little nuts. And that’s one of the less aggravating noises he plays over and over and over again for hours.

What I feel like sometimes...

He takes things a typical child his age would have no interest in and “loses” them. We have to hide all sorts of things because Ryan will throw them in the trash. Earlier this year, he took my husband’s wedding ring and threw it in the garbage while we were on vacation. We searched for days with no luck and finally before check-out we went through the kitchen trash and it was there in the bottom of the bag. He has thrown away “broken” iPads and iPods before he understood the batteries just needed to be recharged. Remote controls are often a target for "relocation". We lost many expensive items before we realized what was happening.

He is destructive—both and intentionally and just through inappropriate behavior. He is destroying the furniture in our rental through climbing and jumping on it, and he is no longer a small child. He is almost 11 and getting taller and heavier all the time. I correct him constantly, but he insists on doing certain things and like anybody, I sometimes need to go to the bathroom, answer the door or phone, or attend to someone else in the house. He uses these short opportunities to get into all sorts of things.

He is obsessed with fire and candles. One of his favorite things to do is blow out birthday candles. We relight them until they are small nubs on his birthday. He now will search every drawer and cabinet for lighters and we worry he will accidentally start a fire. We have a fireplace that we have never and never would use because the danger to Ryan and our home is too great.

He can be violent and aggressive. When he feels well, he is the sweetest child, but when in pain, he can act out violently, slamming doors and swinging them open with such force the house shakes and door stoppers fail, resulting in holes in drywall from the door knobs. He throws things. I have been hit with flying roller blades, toys, the controller for our video game system, etc. If he can lift it, it can become a projectile during a meltdown.

When in a rage, he roughly swings the cabinet doors until they come off the hinges; he has tried the same thing with our refrigerator and oven, but fortunately I’ve been able to stop him before he could do any serious damage to the appliances.

He scratches, head butts and bites—hard. He has learned that these violent meltdowns scare me and sometimes when he really, really wants something and I say “no”--from french fries to a visit to the playground--the behaviors that used to only occur when in pain that he’s unable to communicate are now used to try to intimidate me in an attempt to get what he wants. I recognize the difference, but it is scary nonetheless. Imagine keeping your rolling desk chair between you and your elementary schooler to block blows and bites.

We have cameras in nearly every room of the house because it is impossible to always be exactly where he is. We are getting to the age where running up and down over several flights of stairs repeatedly is exhausting while we are searching for Ryan when he’s snuck away with the stealth of a Navy SEAL--and found a place to hide in complete silence.

Imagine you have to worry about Child Protective Services being called because your child screams like a banshee at the top of his lungs like he’s being beaten and abused simply because he can’t find the exact Matchbox car out of hundreds that he wants to carry on an outing…or that someone will see these violent out of control behaviors and he’ll end up with a psychiatric hold. I have watched this happen to several folks in the online autism community. Or in another twist, that someone trying to be helpful will report domestic violence and start a domino effect of unintended consequences. 

Domestic Violence Awareness month where I live just happened to be a very bad month for Ryan. He didn’t feel well, and we were at the doctor and she did something that apparently hurt him. He slammed his head backward and hit my brow bone so hard that I had a huge black eye from it. He then turned rapidly around and bit me very hard in the cheek, resulting in a large lump and bruise—this kid is so fast he rivals a Bruce Lee-type of martial artist. He grabbed my (and the doctor’s) throat. I looked like a battered woman after this episode and being out in public had me afraid someone would think my husband had beaten me—especially with posters everywhere with a hotline phone number on them and there were a lot of concerned stares.

Please don’t think I blame Ryan for these behaviors. He cannot help them for the most part. He suffers from gut and brain pain. A medicine he took earlier in the year has caused a horrible and uncontrollable neurological tic that even wakes him at night when his right arm suddenly begins flying out hard. I sleep with Ryan because he has on more than one occasion gotten up at night and wandered off. I sleep with one eye open, basically. Not sleeping properly doesn’t contribute to a happy mood most days—for me or him. 

From  Looks more like a jail than a bed to me, but I understand the "why" behind this design.
I miss my family and old friends, but at the same time, I don’t want them to see the way I actually live. I can’t even pee with the door closed because I don’t know what he might do in the minute I’ll be behind a closed door. Facebook makes my life look like a glamorous breeze and it is more comfortable for our families to think we have something akin to a normal life. I don’t want our families to know what we really deal with. I would prefer they think of Ryan as the sweet little guy they remember—and that he still is most of the time. I don’t want them to think of him as a monster, or my father to feel he needs to “discipline the autism away”. But with the constant media blitz normalizing autism and turning it into some sort of human evolution where these kids all have special skills and have a neurodiversity that should be celebrated, they simply don’t GET it.

And that’s fine…but it’s also why for us there’s “everyplace but 'home' for the holidays”, and any other day.

Wednesday, June 7, 2017

Food Allergies and Autism Revisited...It's All about the Gut

This started out as a Facebook post, but quickly became so long that I decided to make it a blog entry instead. I tend to keep my Facebook posts neutral--about my kids, our cat and our travels and not dwell too much on "autism" and all the medical conditions that go along with it, so the blog seems more appropriate anyway. Today I have some good news to share and maybe someone with a child with similar issues as Ryan can be helped, so here goes...

Godiva's antics are a frequent topic of Facebook posts...

Ryan has so many life-threatening food allergies that we're always on high alert with his diet...and he was very self-limiting because of these allergies, which are associated with all the gut damage he sustained. He would only eat meat, rice, seaweed and a few fruits and veggies. Eating out with him has always meant bringing food along and we feel guilty enjoying a good meal while he’s eating plain chicken and rice from a Tupperware container.

For the past year or so we have been working hard on detox, gut healing and we have been trying allergy elimination using an Asian medicine method called Nambudripad Allergy Elimination Technique (NAET—pronounced “Nate”, for short). I'm an engineer, so the first time I saw his doctor waving crystals over him and having him hold allergens and what she calls "neurotransmitter repair" in glass tubes, I was more than skeptical. That said, allopathic doctors haven’t helped him in the least and even deny autism is anything but a psychiatric/psychological condition, so didn’t think I had anything to lose.

I decided to check my reservations at the door and give NAET a chance to help Ryan. My husband (also an engineer) went along to an appointment and upon seeing a treatment asked me, "Do we need to believe it for it to work?"—a thought that had gone through my head more than once, but we had an early success that I thought could be attributed to NAET.

I don't know what that thing is either...

At our first visit I explained that Ryan’s anxiety had risen to what had proven to be dangerous levels. Ryan was literally eating his clothes from stress and I had actually found him choking on a long piece of his t-shirt that had lodged in his esophagus, unable even to cough. I still shudder when I remember that day, and am so thankful I was able to get to him in time to dislodge a piece of fabric about 8 inches long. I felt like a magician pulling on the scarves that just keep on coming as I extracted Ryan’s t-shirt collar.

Check out the neckline--this is what Ryan did within minutes of putting the shirt on

With anxiety reduction as the immediate goal, at our first visit the doctor treated him with her device—I don’t even know what one would call this machine--and he stopped chewing his clothes and hasn't since that day. Just like that, nearly a year of destroying every shirt we put on him was over.

I honestly found the whole thing very odd. Next she had Ryan hold a glass tube and she used a device on 10 different points on Ryan’s extremities in a clockwise fashion on Ryan’s “energy points”. The doctor opened a package and gave me a device to use at home on Ryan to help speed the process of healing along. There were several “heads” for the device and I asked what those were used for. She looked rather embarrassed and told me I would actually be using a vibrator on Ryan to stimulate energy points—but I could massage his hands, wrists, feet, etc…and achieve the same effect, but vibration was faster and more efficient. 

Yep--that's nothing more than a, ahem, "personal massage device"...
From Boise Natural Health

OK…so now I’m using a “personal massage device” on my son to heal allergies. I had to let that sink in but, you know, open mind...

Several visits in, using a crystal and what looks like a ball attached to a stick with flexible metal, she told me Ryan had high levels of Strontium and Uranium and these were causing DNA damage. I was becoming a believer after she was able to successfully treat his anxiety and save me hundreds of dollars in wasted clothing, but I'm a "trust but verify" kind of a gal, so I had him laboratory tested for metals and sure enough, he showed very high levels of both Strontium and Uranium!

The next visit, the doctor "waved her magic wand" over Ryan's abdomen and told me he had two large ulcers in his bowel and gave me a treatment for those. Our kids frequently have undiagnosed digestive tract issues, so this didn't shock me. After these ulcers were healed according to her assessment (and not to be graphic, but I was no longer seeing mucous in his poop), he suddenly became interested in all sorts of foods, which I took as a good sign. Before this he showed no interest in any foods other than "his".

I asked that we work on almond allergy elimination next because that would allow him a milk-like beverage to drink and I could cook for him using almond flour. Five weeks later he was able to eat almonds! We've been working on eggs (which he has been deathly allergic to since he was an infant). He was always so allergic to eggs that even a small amount baked into an item would cause a severe reaction--try baking GF/CF/SF, nut and egg free and achieving anything other than a hockey puck.

Which brings me to today…

Last night Ryan found a piece of cheesecake (think eggs and milk—life-threatening food allergies for him) and he quickly ate the whole thing before we noticed it was missing (the telltale sign was the incredible mess he made on the floor!). We were on pins and needles--should we administer the Epi-Pen and take him to a hospital? We're currently in a foreign country on vacation where English is not spoken so this was not a preferred option.

We literally stared eyes wide at Ryan for about two hours to see if he would have any sort of visible allergic reaction. Having two parents sit across from him staring intently at him didn’t seem to unnerve him although what exactly he was thinking, I’ll never know. It has now been 24 hours since the "Cheesecake Incident" and I'm so happy and relieved to say he seems to feel great and no outward signs of inner turmoil.

Calling Ilse simply a NAET practitioner diminishes all the good she’s done for Ryan that goes way beyond food allergies. Because of the “quack factor” so many use to describe a clinician who doesn’t follow traditional medical dogma, I point out that she is a licensed physician and surgeon who decided years ago that allopathic medicine treats symptoms and looks to cure rather than prevent illness. She is treating Ryan for physical manifestations of the damage that was done to him at a cellular level.


I have come to look at Western-style medicine as really quite odd, viewing the body as a set of separate and distinct parts--organs and tissues that operate independently with little relationship to each other, rather than as a sum of its parts—and these parts are to be studied and treated separately. The mind-body relationship is pooh-poohed, unless of course the physician is unable to make an accurate diagnosis—then your illness is “all in your head” and you must be referred to a psychiatrist after several unsuccessful courses of different prescribed treatments.

The engineer in me has come to think of the human body as a “system-of systems” and the whole person must be treated for healing to actually occur. Ryan also sees a naturopath to restore his immune system. She treats him biomedically and with traditional Hawaiian medicine, with great results.

I don’t know where we’ll end up on this journey to recover Ryan, but his nasty rashes are gone as are the “raccoon eyes”; his gut is healing and apparently his many, many food allergies are being resolved. As his overall health improves, he is better able to learn.

Ryan's rashes were so bad, we were afraid of being accused of child abuse. 

While I’m sure much depends on the skill of the NAET practitioner, I have become a believer in alternative practices. It took a lot of mind-bending to retreat from the “just give me a pill” mentality I had developed over the decades, following the Western medicine model, which I feel compelled to point out isn’t nearly the success story it’s touted to be. Americans are sicker and life expectancy has actually declined.

To hammer this point home, a study released last year by Johns Hopkins estimates medical error to be the third leading cause of death in America, accounting for over a quarter of a million deaths annually (BMJ 2016; 353 doi:; Published 03 May 2016). And further, a study released last month by Yale found that a third of all drugs approved by the Food and Drug Administration are flagged for safety concerns in less than five years.

Chew on that before you “ask your doctor if {insert drug name here} is right for you”.

Side effects include "complete stoppage of the heart", which most of us would just call "death"

But that’s a topic for another day. For today, I just want to be happy my kid who has lived on one of the most restrictive diets ever for nearly his entire 9 years was able to enjoy a piece of cheesecake.

Friday, January 20, 2017

What Constitutes a Free and Appropriate Public Education for a Autistic Children?

The Supreme Court is set to clarify FAPE this session
In a case argued before it last week, the U.S. Supreme Court is considering a ruling that could strengthen, or at a minimum, clarify what defines the Free and Appropriate Public Education (FAPE) promised to students with disabilities in federal law under the Individuals with Disabilities Education Act (IDEA). This is a subject near-and-dear to my heart, and was the topic of my doctoral dissertation at the University of Southern California.

In the case currently before the Court, Endrew F. v. Douglas County School District, the question presented is “whether the ‘educational benefit’ provided by a school district must be ‘merely more than de minimus’ in order to satisfy the FAPE requirement.”

I have never studied Latin, but I’ll go out on a limb and loosely translate de minimus as “the minimum”. What parent of a disabled child—or any child, for that matter--wants to think the bare minimum is an acceptable educational standard?

As a little background, IDEA, a renamed follow-on to the 1975 Education of the Handicapped Act, was itself modified in 1990 to extend eligibility to students with autism. Prior to this, autistic children were left to languish with no programs available to them through the public schools.

In trying to achieve the lofty goal of providing a free quality education to students with disabilities, the federal government pledged to cover 40% of the additional costs for special education. However; in my research I could not determine the actual level of federal funding has ever exceeded 18%. In 2014, approximately 15.3% of the cost was provided through federal funds, representing a significant shortfall to the states.

FAPE is defined under IDEA as special education and related services that are provided at public expense under public supervision and direction with a plan for that education laid out in an Individualized Education Program (IEP).

Related services in current law are quite broad, and defined as speech-language pathology and audiology services, interpreting services, psychological services, physical and occupational therapy, recreation—including therapeutic recreation, social work services, school nurse services designed to enable a child with a disability to receive a FAPE as described in the IEP, and counseling services, including rehabilitation counseling, orientation and mobility services. 20 U.S. C. § 1401(26)(A).  
Apparently, dolphin therapy is a big thing in Kazakhstan and Tatarstan
I find it interesting that Behavioral Therapy doesn’t appear in this rather exhaustive list of services—could “therapeutic recreation” be extrapolated to mean horseback riding or dolphin therapy? This is not to say these are not effective for some children, but there is less (if any) published research supporting their use as evidence-based practice in comparison with the studies demonstrating the success of Applied Behavior Analysis (ABA), or similar techniques in providing measurable cognitive improvement in autistic children.

I point out this exclusion because many parents have complained that schools will not allow for ABA to be specifically called out in their child’s IEP, although Physical Therapy, Occupational Therapy and Speech Therapy services are literally defined by the number of minutes the child is to receive per quarter. I would bet the rent that financial implications are the reason for the omission of ABA, which for severe children like my son, should be provided 35 – 40 hours per week.

Although several courts have ruled ABA must be part of the plaintiffs’ IEPs, the omission of Behavioral Therapy has been interpreted at times to mean schools are not required to offer it despite being generally regarded as the gold standard of care for children with autism. This is significant and at the heart of the case—remember the Latin term de minimus used in the question before the Supreme Court? For children with disabilities—in this case, autism—is there a minimally acceptable standard of education or is there a requirement to educate a child to their potential?

Predictably, parents of special needs children say, “Yes”, but are often surprised to find current law is not in their favor. In the seminal case, Board of Education of the Hendrick Hudson Central School District v. Rowley, the Supreme Court held that while the state must provide an education that is “reasonably calculated to enable the child to receive educational benefits,” (Rowley, 458 U.S. at 206-07), the goal of IDEA was to provide “appropriate, not optimal, special education…” Further, the Court said “…courts many not substitute their notions of sound educational policy for those of the school authorities” (Rowley, 458 U.S. at 198, p. 206). This ruling would seem to allow a great deal of latitude to educator’s to determine the child’s needs—which necessarily must be balanced with the resources available.  

Rowley coined the term, “Basic floor of opportunity”, and has been used extensively in deciding subsequent court decisions involving FAPE cases. The Rowley decision has been interpreted to mean schools are required to provide students with disabilities access to “an appropriate education”—could it be any more vague than this?—but not the best possible one. An analogy often seen when discussing Rowley is Cadillac versus a Chevy…in other words, the minimum acceptable, aka, de minimus.

But who could possibly argue with giving students with disabilities the best education possible?

Given the limited resources schools have, it is not surprising there is another side to this argument.
ABA is an evidence-based effective treatment for autism
ABA has been shown to effectively treat children with autism, but to be effective in severe cases, a child must receive between 30 – 40 hours per week of one-on-one ABA services. The cost of these services (which have historically been denied by health insurance) are quite expensive and out of financial reach for most families. Additionally, according to the Centers for Disease Control, medical expenditures for individuals with autism were 4.1 – 6.2 times greater than for those without an autism spectrum disorder. The sheer expense of raising an autistic child results in parents pressing schools for increased service levels.

Students with autism also use more services than children covered under different disability categories and use a wide array of services. In addition to Behavioral Therapy, Occupational Therapy, Physical Therapy, Psychological Counseling and Speech Therapy are quite common at a minimum. Since services cut across several areas of professional expertise, it can be difficult for schools to staff all specializations to meet demand.
It's not hard to spot the trend here...
Couple that with the rapidly rising prevalence rates of autism, and it doesn’t take a rocket scientist to realize there is far more demand than supply.

In California, the number of public school students with an autism diagnosis has risen seven-fold since 2001, according to the latest special education data from the California Department of Education, the Sacramento Bee reported in July of last year. There was a 7% jump from the 2014 – 2015 and 2105 – 2016 school years. The increase in kindergartners with autism jumped 17% overall.

Assuming similar increases in most states, and it’s clear where public school special education costs are headed.

For those of you who think educating these kids to make them as independent as possible is a waste of your tax money, consider this: a 2015 study that appeared in the Journal of Autism and Development Disorders estimates the economic costs of autism for 2015 to be $268 Billion in the United States, rising to $461 Billion by 2025 if prevalence rates remain flat. If the increase observed over the last decade continues, autism’s costs to society will exceed $1 TRILLION by 2025.
From Psychology Today
And as expensive as it is to educate a child with autism, one thing is for certain. These Children with Autism will become Adults with Autism. In my home state of Hawaii, Dr. David Fray, then the Department of Health Developmental Disabilities Division Chief testified at a 2014 hearing that his department served 300 adults with severe autism, with the cost of each individual ranging between $200,000 to a whopping $900,000 per year.

Who do you think pays these costs? The insurance companies—nope. You, the taxpayer.
Pay for the Chevy for the Lamborghini later

So I ask you—should a Free and Appropriate Public Education for an autistic child be a Cadillac or a Chevy? Because if it’s the Chevy, taxpayers will be paying the equivalent of Lamborghini taxes to provide care to the flood of autistic adults into the social system.