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

Going It Alone

This week we received some bittersweet news from my husband’s employer, in the form of a change in the out-of-town job he’s been supervising. It would require he stay on the job site for 45 days or longer, instead of the one week on and one week off it’s been this month. While I’m glad he not only has a job in this economy, but is also afforded opportunities for more hours and better pay, his absence is felt very strongly at home. I’m sure other households with special kids can relate when one caregiver must be absent for long periods of time. Heck, any family with one parent who takes business trips can understand.

This reminds me of a few things. First, I sympathize with my mother even more. There was always a baby in the house, and for several of my Elementary years, my father took numerous business trips and was away a lot. There were anywhere from 4 to 6 children at the time, and my mother, amazing as she is, cannot have gotten through that unscathed. I know I wouldn't have.

I’m also reminded, as I am anytime my husband is gone, how much he does when he’s here, and how much I should appreciate his support. I know I don’t do that enough when he’s home.

That all being said, I think as parents of special kids, we understand how isolating it can be to care for them. I have read so many blogs and comments from parents that we feel so alone sometimes. The lack of resources just touches the surface. Sometimes there are family members and friends who just don’t get it, and we get tired of explaining all the time. (My cousin commented on this on Facebook recently, and it kind of inspired this post.)

I suppose if this is our lot in life, we need to be our own advocates for the support we need, and our own researchers of resources. And we need to band together to gain strength from each other. It’s a long, hard road to travel, caring for special kids and all the joy and heartache that brings with it.

- Adrienne

Zucchini Experience

Our landlord brought us some zucchini yesterday, leftovers from his wife's garden. I hadn't pulled it out of the bag till today, so I had no idea how HUMONGOUS they were. One green, one yellow. I offered them each in turn to Liam to examine, and then to Sam. The differences in the way the boys experience them is so telling.

Liam tried to pick up the green one.

After multiple failures, he decided it was too big.

The yellow one was just right, however.

He proceeded to bang it on its end with much gusto,
because this made such lovely noise.

He also tapped it against his head.

Liam, being the sensory seeker, really enjoyed interacting with the zucchini with his whole body (as much as possible being in his high chair.) He loved touching it, feeling it, smelling it, and making noise with it. Sam however, took an entirely different approach.

The green zucchini immediately became a weapon.
And yes, the crazed look was part of his desired pose.
Sam is not one for candid photos. If he knows there's
a camera, he is posing for it.

Only when I asked him to calm down a little did he
choose to cradle the zucchini like a baby, his idea.

Note that Sam chose to interact with the zucchini in a more limited way, and use it as a tool of his imagination, rather than for its own sake. Not that either way is wrong, just different. And very directly related to how each experiences sensory issues and the Autism Spectrum.

I like observing them in the same activity sometimes, for precisely this reason: to watch how differently they experience life, and yet how similarly; and how I can share it with them. I did, after all, offer them the zucchini to play with, and took pictures. It was fun, for all of us I think.

- 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

Lines of Communication

One of the key features of Liam's PDD-NOS diagnosis is his delayed communication development. At 2 years and 7 months, he has less words he says regularly than I can count on both hands, and most of them can only be interpreted by us. They don't even sound the same every time. He doesn't point to things, or look where we are pointing. He doesn't understand most of what we say, except for limited words, and some signs. And he does not babble or put sounds together or make noises that sound like they could be words, most of the time.

However, we have spent the last year learning to communicate with him, and learning how he communicates with us, through trial and error, and sometimes through sheer luck and happenstance.

Daddy has been away for the last 4 days for work, and was gone for 7 days a week and a half ago. Liam loves Daddy. Not just any kind of love a kid has for his Dad. No, Daddy is the favorite, preferred over all other human beings on the planet. Daddy's absence is felt by all, with a vengeance. Liam has made it clear this week especially how much he misses Daddy, and I have become aware just how deep the connection may be. It also makes me rethink the lines of communication between them.

Twice this week, Liam has led Grandma to our bedroom door, saying Dada (one of his few words), and upon being let in, climbed on the bed and lay down in Daddy's spot with his head on the pillow for a few minutes. I suppose he was breathing in the lingering scent. Then he tried to bring Daddy's clothes out into the living room with him.

Last night, Liam woke at 2:30 AM and had to be brought into bed with me. He fell back to sleep, but then woke for the day at 5:30. Upon informing my husband of this, he told me he too woke up at 2:30, very alert, and did not know why. And his alarm was set for 5:30 this morning.

I'm not usually a big believer in other-worldly things or fate or whatever. However, there does seem to be a deep connection, or bond of communication, that ties my husband to his only son. And perhaps it is indeed related to the fact that Liam has such limited powers of communication. He can't use his words to tell me how much he misses his Daddy. He can't tell his Daddy he loves him on the phone (although he can kiss the phone when I put Cliff on speaker, which he did this evening). He can't even communicate his frustration or anxiety to me in a way I can understand and soothe, except to be cranky and difficult until Daddy comes home on Monday (yes, 9/26, it's forever from now). But it means something, and it plucks at my heart strings.

- 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