Understanding Ethan: Five for Fighting

Wednesday, May 14, 2008

Five for Fighting

The band, Five for Fighting, is generously donating $0.40 to Autism Speaks for *each time* the video is viewed. The funding goes toward research studies to help find a cure. When you have a moment, please visit the link below to watch the video and pass it along to your friends and family. They are aiming for 10,000 hits, but hopefully we can help them to surpass this goal.

http://www.whatkindofworlddoyouwant.com/videos/view/id/408214

Ethan may not have autism, but SPD is a hair's breadth away and many autistic kids have SPD. I have gone through and witnessed much of what is on this video. For anyone out there with kids with neurological disorders such as SPD and autism, please know that the GFCF diet has worked wonders for my Ethan. It's worth giving it a shot. A good diet, thoughtful supplementation, a lot of hope and tons of love can equal symptom reversal. Ethan is the proof.

Peace,
Steph

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How this began

I don’t remember where we were on our journey when I said this horrible thing to my secondborn child. The child who I’ve always said is so much like me. I don’t remember when exactly it was that I became so exhausted that I let down my guard and said exactly what was truly on my mind, without a thought about how it would make a five-year-old child feel. But I do remember what happened.

We were in the kitchen. I was tired. It had been one of those days. One of the days where Ethan melted down in a second over something small. A day when he responded to me with completely unrelated lines from a movie when I asked him a question. A day when flushing the toilet wasn’t about to happen because the thought of being drowned in the ensuing overflow, a story created in his own mind, brought him to tears and screams of complete terror.

I was feeding him lunch and he wouldn’t eat, as usual. I asked him a question. What, I don’t remember. But his answer was another non-sensical line from some movie catalogued in that vast brain of his and I just said it.

“Ethan, I just don’t understand you.”

The second after I said it, I wished I could take it back. I hated myself instantly. His big, velvet brown eyes looked up at me with a look I can’t even describe. It was some heart-breaking mix of sadness, fear and a bit of desperation.

I apologized right away, but it didn’t matter. He just repeated “You don’t understand me, mommie?” in this sad, searching way. I’ve always told everyone that I understand him better than anyone. I’m the only one who can bring him back to us when he’s lost in one of his tantrums. I’m the only one who can get him to stop playing in the sandbox without creating a completely chaotic scene. I understand he needs choices, I understand that his brain works differently, I understand that he’s not like everyone else. But that day, I didn’t understand him, as I don’t on many days. But instead of pushing through and trying to stay strong, I faltered.

And that’s when I made a commitment to do everything I could to understand my Ethan. And that’s where this blog began.

About Ethan

Ethan was a wonderful baby. He was snuggly, expressive, and most wonderful of all, quiet. He didn’t have the screaming fits and the fussiness of other babies. He slept peacefully when he was supposed to sleep and charmed everyone when he was awake. I couldn’t even tell he was teething until all of the sudden those little white nubs in his mouth appeared (and he bit me while nursing!).

But Ethan was almost not to be. When we had had our first child, Ethan’s older brother, Tyler, I had gotten post partum depression and decided not to have another baby. Ever. Ty was eight months old when I finally decided to get help. After two months on Zoloft, I ditched my medication, declared myself healed, and started the road toward having another baby. Two months later, I was pregnant. Ethan was born just 21 months after his older brother.

We were so glad we had him and couldn’t imagine life without our little snuggle bunny, Big-E. But starting around 10 months of age when E began walking, I noticed that something was different about him. I couldn’t put my finger on it though. Sure, he was different than his big brother who almost from birth had been dubbed an old man in a boy’s body. Tyler was always more mature and I tell everyone that he was two for about two minutes. Seriously. He had one or two tantrums in his day, and that was it. He was incredibly smart, always helpful and remarkably kind and loving to his little brother.

So I figured it was the first vs. the second child syndrome. Maybe Ty was just more Type A and his brother a little more loosy goosy. After all, I’m a second child, so I’m familiar with being the polar opposite of my older sister. I told myself to relax and that really, nothing was wrong. Developmentally he was on track, everyone commented on how wonderful he was and he was knock-out adorable. What’s to worry about, right?

I was working full time at a Virginia university back then, and Ethan and Ty were in a home daycare near our house. I commuted an hour each way. Shortly after Ethan started walking, I started having horrible anxiety attacks on the way home, fearing that something dreadful had happened to Ethan. It always had to do with him wandering off and falling in a nearby pool, walking into traffic, getting abducted, or something equally terrifying. I would spend the entire hour of my commute home crying, weaving in and out of traffic to shave any second I could off the drive and get to my Ethan. I had that pit in my stomach feeling that something had to change. I knew then and there that I had to stay home with my children. Period. I need to go back home to Colorado.

My husband worked hard to get a transfer to a branch of the company near my home town. A few months later, we sold the house and were moving. I decided I was going to work from home and raise the boys. I had no clients, we had limited money and were moving to a city where the cost of a house (thus cost of living) was about double that of where we were in Virginia. So why did I have to make such an illogical move just to be able to stay home with the kids? I have no idea. I just knew in my gut that that’s the way it would have to be done.

Within a few months I had a client and a few months after that another. I was working when the kids napped and figuring out how to become a stay at home mom when they were awake (that’s a whole other book in and of itself). I was where I was supposed to be.

But Ethan, oh Ethan. As he grew older and I was with him day after day I saw more and more troubling signs of something. What, I didn’t know. Within a year of knowing me, my neighbor implied repeatedly that Ethan had autism. I researched. I cross checked signs and symptoms. He would have one or maybe two of the several Aspergers lists I found. Just like I knew my nightmares were some sort of omens of staying in Virginia, I new in my gut that he didn’t have autism. But what? What was it that made him cover his ears all the time, scream like he was being beaten when he got haircut, refuse to eat anything but hot dogs and chicken nuggets, retreat into this Ethan-only world where he couldn’t hear your voice or even realize you were there, and, well so much more?

Over time, the pieces started to come together. I would learn snippets here and there about SPD, overhearing ladies talking at the library, a short article in a parenting magazine. By the time Ethan was 3, I was almost sure that was what it was. I cut down on his dairy because it’s all he ever wanted and it was constipating him like crazy and also because my neighbor, in her vigilant passive-aggressive pursuit to cure him of the autism she was so sure he had, mentioned that she had learned that casein sensitivity could be the cause of his, um, behavior issues.

About the same time, I decided to have him evaluated by a professional before taking him to preschool. If indeed I was dreadfully wrong and he did have autism, we needed to know. If not, I needed to do what I could to help normalize his social interactions and behavior.

Our insurance covered a nearby “play therapist,” so we started there. Like clockwork, on our first visit Ethan displayed one of his I-don’t-want-to-go-there tantrums and I was glad the therapist was able to see it. And, just like clockwork, he calmed down in the space of about a minute and started telling elaborate stories with the little play animals in the office. The therapist was stupefied. We met twice or three times with this guy, I can’t remember. But I do remember that he said that Ethan definitely did not have autism, showed signs of creative genius and displayed some very rare behavior that he couldn’t define. He said he was developmentally on track and showed by his play stories that he felt safe and secure. I brought up SPD, and he knew nothing about it.

So, with false reassurance, I continued down our road, using methods I had found to work with Ethan (choices, choices, choices). Within a short time of cutting down on his dairy consumption his glazedness and behavior improved a bit. Was it just growing up, or was it the dairy? I don’t know. He had a great first year of preschool, although the beginning was rough. The teachers gave him choices and left him alone in the quiet corner when he needed his alone time. He still had some of his old behavioral habits (covering the ears, rare meltdowns, etc.), but life was much better. After all, he wasn’t wandering out of the house anymore (yes, two times we found him outside and once a neighbor brought him home when she found him wandering the cul-de-sac in his undies one morning), or screaming when he got his haircut (that ended at age 4) or causing huge commotions. All was well.

Then, in his second year of preschool, the teacher suggested he be evaluated by the district before entering kindergarten because of his behavioral issues. Developmentally he was on track, very bright even, but socially, there were some problems. That’s when I was shocked out of my complacent state and said to myself, “Okay missy, it’s time to kick this SPD in the ass now, got it?! You’ve known this is the problem all along! Stop ignoring what’s going on and get down to brass tacks!” Did I mention that I had another baby after we moved back to CO as well? My plate was pretty full with Ethan’s baby sister, working at home, driving oldest brother Ty to school and his myriad athletic activities. But now, I realized it was Ethan’s time. It was his turn for my attention. I mean, that’s why I made the big move back home in the first place. It was time to kick things up a notch.

So, I researched. I read the Out of Sync Child. I signed up for an online support group of parents of kids with SPD. I read, I talked with parents in similar situations and I plotted out what we would do to help our Ethan. We cut back on gluten and became more vigilant about cutting dairy completely out (as it turns out, by the way, SPD is often confused with autism and can be considered to be on the “autism spectrum” so I was right and wrong, I suppose). This was all before Ethan’s observation and our first meeting with the ladies I shall refer to as the “District People”.

Our meeting went okay. By the time of Ethan’s observation, we had cut out gluten for almost a month, and he had improved in school within about two weeks after we reduced gluten considerably. So, he was a total peach for the observation. The observer, a social worker who is an expert in autism, called him “socially savvy” even. I was happy that he was doing better, but I was afraid that such a great observation may stand in the way of him getting the help he needed. And, to an extent it did. The district people didn’t recommend much in terms of helping Ethan, so I took matters into my own hands.

I called our pediatrician, who I had brought up my concerns about Ethan to for years. She said he was developmentally normal and probably just a defiant child. So, when I told her what was going on and that the district observed him and determined he had some “sensory issues” she was kind and gracious and gave me a boatload of referrals so I could get him OT and see a child psychologist.

So, with Ethan at about 5-1/2, newly starting OT, that’s where we begin here.

Wednesday, May 14, 2008

Five for Fighting

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Understanding Ethan

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How this began

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About Ethan