Between a Rock and a Hard Place

I have spent the last few weeks entrenched in my newest research project (research is kind of a hobby of mine) – to find more ways to help my kids be successful, not overlooking anything I might have been reluctant about. This was inspired by conversations with one of my sisters and information she shared with me, for my own perusal, nothing more. My sister is a vegetarian, and has made many diet and lifestyle changes for health reasons. She recently began cutting out foods that contain sugar, or ingredients that can become sugars or yeast in the gut. I had never heard of such a diet, but I have heard of other dietary interventions for a variety of issues, some that she and I share. She also wanted me to read the research behind the diet, as it was shown to help with Autism.

After looking through some of the links and articles, it occurred to me that diet and nutrition might be a puzzle piece I was missing, considering that Liam is not growing well, eating hardly anything, and sleeping very poorly. I’m well aware of how diet affects physical and mental functioning, if only from personal experience. So I cross-linked to other sites, searched out books at the library, and hunkered down (in the precious little time I have to myself each day) to gather information.

I am a skeptic at heart. I need to read or see the science behind things. I usually scoff at anything that has no proof, or at least nothing tangible to back it up. So this is the purpose of my research. What I have found however, is way more than I expected, and almost shocking that I haven’t heard of much of it before. There’s been tons of research done in the last 15 years that supports dietary interventions and nutrition assessments for children with Autism Spectrum Disorders. It makes sense too, that if diet and nutrition are so important for normal growth and physical and mental functioning, this should be a crucial piece for treating children with ASDs. These children (mine for example, but there are hundreds of thousands more) regularly have problems with cognitive functions and communication, GI issues, feeding difficulties, sensory processing problems, and fine and gross motor issues. So why isn’t this addressed by our pediatricians?

Well, Judy Converse, MPH, RD, LD explains it quite well in her book “Special-Needs Kids Eat Right.” (2009, Penguin Group, New York) It’s a combination of history, holes, and controversy.

• History: Unfortunately, some remnants remain of the now defunct theory that Autism is caused by cold, unloving mothers. It was a terrible idea to begin with, but we are still having trouble ridding the world of this.
• Holes: Most doctors don’t receive any training in nutrition during their education. Why? Because of specialization. The medical field now has specialists for every system in the body, but all separately. There is no whole body practice. And, pharmaceutical companies are great marketers, so doctors are encouraged to push prescriptions, and treat symptoms, instead of getting to the root of the problem. I have this complaint all the time, that doctors don’t treat patients, they treat symptoms.
• Controversy: Finally, there’s the sacred cow of vaccines. Most don’t know the whole story, or the science that got misconstrued, so the safety of vaccines is still in hot debate. But the truth is, vaccines are safe (in my opinion), except for a subset of children who may be predisposed to react to a clustered viral exposure. I don’t feel my children were adversely affected by vaccines, but there are children out there who were.

So all this means that traditional doctors are reluctant to venture into treatments that aren’t mainstream, especially in fields of knowledge they are unfamiliar with, like nutrition (that is usually the domain of licensed dietitians and nutritionists).

On Tuesday, at the boys’ physicals, I too found this out the hard way. But I was prepared with the above knowledge, and knew which questions to ask. The pediatrician, as expected, was reluctant to offer any information about dietary interventions or the like. But she recognized my concerns about Liam’s poor growth and nutrition, and referred me to a nutrition clinic that also has a GI department. AND it’s covered by our insurance!

I do feel kind of stuck though, between the immovable rock of traditional medicine, and the hard place of going to the other extreme, territory I’m uncomfortable with unless I can read the science. It’s a tough place to be when I just want my kids to be healthy, and be the best they can be, whatever that turns out to be. This is a place many parents of ASD kids before me have been, and more after will be. But I hope it will be easier for them as time goes on.

Here’s hoping for progress and open minds.

- Adrienne

Sensory Processing Disorder

Here's a brief overview of Sensory Processing Disorder. There are several categories that comprise the disorder. The most common, and the one my children fall under, is Sensory Modulation Disorder. This involves one or more areas of sensation, including:

• Touch
• Movement and Balance (Vestibular)
• Body Position and Muscle Control (Proprioception)
• Sight
• Sound
• Smell
• Taste

The response is usually one of three:

• Overresponsive (or avoiding)
• Underresponsive
• Sensory-Seeking

Let's use Sam as an example (as related to the previous post, only SOME shoes make sense,):

- Being Overresponsive to touch, he is hypersensitive to certain textures, tags in clothing, light touches, and reacts with a fight or flight response.
- Sam gets easily distracted with a lot to see, lots of people, too many toys in the store, or even cluttered classroom walls, and can't focus on his work. Bright lights make him squint and his eyes water and burn.
- Noise is a constant complaint, and a distraction. If I turn the radio up in the car, he says it's bursting his eardrums. He was afraid of the vacuum as a baby.
- Smells are always much stronger for him than anyone else, even ones no ones else notices. This can be an issue in public since he does not know the difference between rude and polite comments about people.
- Taste becomes and issue at dinner every night. I never use pepper if I want him to eat, and anything new usually remains untouched. He also doesn't like his food mixed together or touching, because the flavors mix together and taste different.

It can be challenging, navigating Sam's sensitivities, and then turning around and dealing with Liam's, which are opposite in most cases (he's a sensory-seeker in most areas). However, it's also quite interesting to learn about the science behind the disorder, and the proper sensory functioning. Makes me feel smarter knowing what I know and sharing it.

- Adrienne

only SOME shoes make sense

On Friday, I took Sam shoe shopping, and learned a thing or two about him.

Number one: he has man feet. The kid is 10 years old and wears a size 6. Kid shoes only go to a size 6. In a few months, I will no longer be able to buy the cheaper kid shoes and will have to shell out twice as much for adult shoes that he won't like as much because adult shoes come in "boring" styles. (It's true, I saw the ones at Payless for men.)

Number two: Sam's experience with Sensory Processing Disorder (SPD) extends from his hair to the tips of his toes. When picking out shoes, he has a clear preference based on the weight of the shoe as a whole and the weight of the material touching his feet, as well as how snug it is. Shoes that are too heavy, like "skater shoes", never make the list. He likes the new Airwalks that look more like old Keds I had as a kid: light canvas, with a tie so he can adjust how tight they feel, and almost no bulk to them at all.

Sam is a sensory avoider when it comes to touch, sights, sound, smells, and tastes. Everything is too scratchy, too bright, too loud, too stinky, too spicy, and has been since he was an infant. And according to my mother, I was like this too - a very sensitive baby. But in light of my new-found knowledge on SPD, I have new coping methods and a better understanding of what makes Sam tick, and why some things are "too much" for him.

And one positive of the experience - those lighter shoes cost less than the bulky skater shoes!

- Adrienne

A Little Background

In my daily life, the things I find most rewarding, as well as sometimes the most frustrating, are finding every way I can to help my kids live the best lives they can. By “best” I mean getting enjoyment like all kids should, but also fulfillment and development and learning, so they can grow into happy, productive adults. 

This is a challenging task and a full time job. Not only are they 8 years apart, so at very different stages of life, but they both have Autism Spectrum Disorders and Sensory Processing Disorder. But the similarities stop there. My 10 year old has Aspergers and is very bright, has the vocabulary of an adult, reads well beyond his age level, and faster than me. He’s also a sensory avoider, and over-sensitive to just about every sensation. My 2 ½ year old has PDD-NOS, with mainly communication and developmental delays, so he barely speaks at all, and behaves more on level with an 18 month old, except for his activity level. He is also a sensory seeker in almost every area, except for feeding. He has serious food aversions because of his other sensory seeking needs. So one kid talks non-stop, and freaks out at loud noises, smells, crowds, etc. and the other talks very little and makes lots of noise and loves rough housing.

The task is also challenging because Aspergers was only in the DSM-IV (Diagnostic Statistical Manual version 4, basically the Bible for psychologists/psychiatrists) as of 1994, so research and information are still scant. PDD-NOS likewise is such a broad category and is used in so many different ways (like a temporary diagnosis, or a catchall for kids who don’t fit Autism fully) that there is not enough specific information. Sensory Processing Disorder is an even newer field of research (only the last 15 years or so has it been more fully recognized) and many doctors and professionals still don’t know much about the science behind it. So information is not easy to find, nor are resources, at least anywhere not near a rather large city (I live near Salt Lake City, which is a SMALL city) where there are plentiful research schools and other organizations.

BUT, I find the challenge rewarding not only for its results, (like when I find things that work!) but also for the journey. I am very academically inclined, and obtained a useless Bachelor’s degree in History because I loved reading and researching so much, and preferred facts and historical information to fiction or science. And I’m well-versed in using technology, being raised in a techie family (my father was a software developer for many years). I enjoy hunting down information at the library, on websites, through word of mouth, and cross-referencing everything. I have more internet bookmarks than I care to count, on every topic I can think of that might help my kids function better, or enjoy life a little more, or give me a break from it all. 

Every day is a new adventure. I don’t know which child will throw a tantrum about what, or if I’ll have a strategy up my sleeve to deal with it. And new ones pop up all the time, as the children enter new life stages (my oldest is now a tween, and acting much like a teenager with his constant attitude and defiance, and my younger is smack in the middle of terrible twos, despite being behind in a few areas).

Oh, one more thing. To top all this off, I’m a Bipolar Mommy. While I do okay most days regulating my own emotions, and have had 5 years of practice doing so, that’s still only 5 years, and as many with Bipolar Disorder know, it’s always a work in progress to hold your own. So my patience level fluctuates from day to day, and my emotions are tied inextricably to my successes and failures at helping my kids thrive. My husband is a trooper, I can tell you that much.

So bear with me as I "puzzle" through the conundrum that is raising my sweet boys to successful adulthood. And if I can share anything of value or enlighten you in anyway, or at least give you a laugh, awesome. If nothing else, this provides me an outlet, and a record of my failures and triumphs.

- Adrienne