A long-overdue update…


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It’s been some time since I last posted to the blog, and not for lack of desire to do so. Truthfully, I found that I needed to pull back a bit from my immersion into all things Autism-related, as it was becoming all-encompassing for me, both mentally but also emotionally – i.e. I would get so excited about this article, or this possible treatment, or this something to try, and then would find myself getting worn down when I saw Ben was having a bad day, or the positive changes I’m so desperate to help him realize weren’t revealing themselves quickly enough (a relative term, I admit.)

That being said, my quest continues and my commitment is unwavering – I just need to learn to do a better job tempering my excitement, expectations, hopes and emotions as they relate to working with and for Bennie to improve all things in his life.

So, here’s what’s been going on (commence braindump):

Respen-A: Ben’s now been on Respen-A for several weeks and while he hasn’t experienced any negative side effects from the treatment, admittedly we’re also not seeing any dramatic improvements. In the first couple weeks, I could swear I noticed more complicated speech and questions from Ben (i.e. “Where did you buy it from?”), but (full disclosure) his ABA therapists had been focusing on “W” questions around the same time, so it’d be tough to credit that solely to Respen-A. Still – it hasn’t been hurting him any, and the FAQs associated with Respen-A do state that some kids can take several weeks for the positive improvements to surface… and other parents do a “vacation” from Respen-A for a few days (i.e. take a weekend off) to help gauge the positive effects of teh treatment (by removing it and seeing what, if any, repercussions there are as a result.) So we’ll likely try that soon, just to see.

Also worth noting is that the doctor who created Respen-A has come up with a new formula for it that they’re seeing some positive early results from:

We currently are working on a new formulation of the Respen-A to try and increase the effectiveness we have seen thus far. The new formulation is called 4X12C at this point (nothing of importance to you, but this is how you will hear it referred to during the trial). A few parents of long term Respen-A users have tried this new formulation and tested it in their children, and up to date, they are seeing much better results than with the original formulation of Respen-A.

So we’re likely to try that and see if we notice any positive improvements/results.

FOS: In all my reading online, I read about how it’s typical for some ASD kids to have “gut issues” – that is, build up of bad bacteria and/or yeast in their stomachs, which can leak into their bloodstream and affect their personalities/brains (“leaky gut syndrome.”) I’ve seen first-hand how Bennie can react within minutes to eating something and then get incredibly hyper and/or stimmy (giggling uncontrollably, hyper, bouncing around), so this seemed to resonate with him. As a result, we’ve put him on a daily dose of prebiotic FOS (fructooligosaccharides):

FOS: a Supernutrient Documented to Rebuild Intestinal Flora, improve mineral absorption, and more
• A naturally sweet, indigestible fiber derived from chicory roots, FOS (fructooligosaccharides) are one of the best-documented, natural nutrients for promoting the growth of Lactobacilli and bifidobacteria bacteria, a key to sound health
• Minimal impact on blood sugar levels
• Increases populations of beneficial bifidobacteria in the colon
• Reduces populations of harmful bacteria, such as Clostridium perfringens
• Improves calcium and magnesium absorption
• Improves liver function

Thus far, no negative side effects as a result, and it’s just 2 more (large) pills (poor) Ben has to wolf down in the morning (kid takes 10 pills every morning – wow.)

Strict GFCFSF diet: Probably the biggest, and most positive change, we’ve made when it comes to Ben these past few weeks is a much stricter adherence to a gluten/casein/soy-free diet (especially cutting out the soy.) Now that I’m reading the ingredients label of every single thing he eats (wow it’s amazing how many things you can find soy in), the frequent rashes and/or intolerance-triggered outbursts have basically been reduced to zero. There’s still so many yummy, healthy foods he can enjoy and, in fact, the menu choices have expanded dramatically now that I’m shopping at places like Gluten Free Specialty, Whole Foods and Sacramento Natural Foods Co-op – Ben’s now enjoying homemade pizza, tasty chicken or beef tacos, even friend chicken (and soon: perogies!) and he’s loving it. The kid can eat (I don’t know how he stays so skinny, but I’m envious, I’ll say that much.) Ultimately, it’s just great to see that we’ve managed to cut out the negative reactions associated with the food he’d previously been eating (SOY), and to see him enjoy so many tasty dishes.

Therapies: In the question to seek out whatever additional help there might be, we started to go with Ben to a therapist who supposedly specialized in kid and ASD/ADHD-related issues. She meant well, and I’ll definitely credit our (few) sessions with some eye-opening insights (mostly due to Ben’s mother & I talking about how we handle/do things differently at our respective houses so we could standardize to provide a more level norm for Bennie), but after just 3 or 4 sessions it became clear that this really wasn’t going to be all that helpful for us – and especially Ben – so we moved on.

We then visited with a child psychologist (also specializing in ASD/ADHS issues), but after he spent a 1/2 hour 1-on-1 with Ben, he regrettably informed us that due to Ben’s limited abilities to communicate (either expressing or understanding), he really couldn’t help “crack through” to Ben and help work through issues with him.

But the search continues – we’ll find someone.

Allergist: long (long) overdue, but Ben was finally tested for the full suite of allergies. (I would love to regale you all with how epically BAD the allergy testing went and how it took me + 3 other people to hold Ben down as he screamed while getting blood drawn, but truthfully I’d rather just forget about the whole awful experience.) Turns out Ben has a mild allergy to eggs. That’s it. Nothing else. On one hand, I wasn’t surprised, but on the other hand, what about gluten? Soy? Milk? The allergist explained that just because he doesn’t have a physical allergy to these things, it doesn’t mean he doesn’t have an intolerance to them (see “leaky gut” above) – so: we remain on the strict GFCFSF diet. But good to know he won’t be going into anaphylactic shock anytime soon.

Doctor: we had our quarterly session with Ben’s specialist (a neurologist focusing on ASD kids) a couple weeks back and he could see that Ben was doing “better” compared to our last visit. He suggested not changing anything (treatment or prescription-wise) for the next 3 months, to give his brain & body a chance to level out and process the recent changes in treatments. I realized then – and in light of the many things we’ve tried/changed in Ben’s treatments these past couple months – how much his initially being on Risperidone helped him overcome his stimmy and obsessive behaviors… but the side effects of up’ing those meds are just too damn scary to risk (in our minds)… so the hunt continues.

OCD: the one area that really hasn’t improved, and has stayed regrettably regressed, is Ben’s uncontrollable obsession with public restrooms (flushing toilets and running water in sinks) and the stimmy repetition of songs, tv show songs & dialogue, etc. These were all things that were really pulled into check when he first went onto Risperione, but now that his body has built up a tolerance to his current dosage, they’ve come back full force. And it’s really hard – formerly “safe” places like our weekend forays to Sky Zone or Target have now ended with me literally carrying a screaming, crying, kicking kid out while he wails for the bathroom and passerbys pass judgment with their searing glances (just say 1 thing to me, I dare you.)

We’ve talked about this with Ben’s ABA lead therapists, who’ve suggested going back to doing social stories every time we go out anywhere, even if it’s to normally “safe” places:

Social Stories are a tool for teaching social skills to children with autism and related disabilities. Social stories provide an individual with accurate information about those situations that he may find difficult or confusing. The situation is described in detail and focus is given to a few key points: the important social cues, the events and reactions the individual might expect to occur in the situation, the actions and reactions that might be expected of him, and why. The goal of the story is to increase the individual’s understanding of, make him more comfortable in, and possibly suggest some appropriate responses for the situation in question.

As well, I’ve noticed some (hopefully positive) responses in Ben when I tell him “no more bathroom talk” when he brings up restrooms in conversation – this seems to register with him, and while he may not stop entirely, he pauses for thought, acknowledging the request, so that’s something. I’ll take whatever little, tiny wins I can get.

Super Proud Daddy Day:
the most positive thing I have to share is March 10th, 2011 – on that day, Ben did me proud in 3 separate ways:

  1. He had to do a school project “all about Ben” and in the portion where he had to write down what he wanted to be when he grew up, he wrote “Daddy.” Wow.
  2. At his school assembly, Ben was presented with an award for “Citizenship & Character” (the only one in his class who received the award) – you should have seen the smile on his face when he stood in front of the assembly to receive his award!
  3. Unexpectedly, I received an IM from Ben’s mom mid-afternoon, which began with “Hi Daddy – it’s Ben.” I then proceeded to have an instant messaging conversation with Bennie with him doing the typing! (obviously with his mother’s help, but his answers & his typing!) I was astounded. And beaming.

So there’s an update over the past couple weeks – lots going on, lots of positives, but many miles yet to go. Still – it’s about the inches won, not the game, and step by step we’re getting there. He is, and remains, the happiest and most loving kid on the planet, and I am the luckiest father as a result.

A journey bright and pure

Personal

February 28, 2011

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I am not a “man of faith” in any way, shape or form, yet despite the religious undertones of this song, I find myself thinking of my Bennie every time I listen to it. The poetic lyrics seem to perfectly capture a father’s love for his child, and all the hopes, dreams, fears and compassion I feel for my darling boy… “I don’t believe in the existence of angels / But looking at you I wonder if that’s true…”

Nick Cave & The Bad Seeds – “Into My Arms”
I don’t believe in an interventionist God
But I know, darling, that you do
But if I did I would kneel down and ask Him
Not to intervene when it came to you
Not to touch a hair on your head
To leave you as you are
And if He felt He had to direct you
Then direct you into my arms

Into my arms, O Lord
Into my arms, O Lord
Into my arms, O Lord
Into my arms

And I don’t believe in the existence of angels
But looking at you I wonder if that’s true
But if I did I would summon them together
And ask them to watch over you
To each burn a candle for you
To make bright and clear your path
And to walk, like Christ, in grace and love
And guide you into my arms

Into my arms, O Lord
Into my arms, O Lord
Into my arms, O Lord
Into my arms

But I believe in Love
And I know that you do too
And I believe in some kind of path
That we can walk down, me and you
So keep your candles burning
And make her journey bright and pure
That she will keep returning
Always and evermore

Into my arms, O Lord
Into my arms, O Lord
Into my arms, O Lord
Into my arms

The magic of a cheeseburger.

Diet, Personal

February 23, 2011

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Hamburger!Tonight I made a special treat for Bennie and his brother: homemade hamburgers from scratch (first time I’ve ever done it, and surprisingly quick and easy to do so), seasoned up with yummy spices, and grilled to perfection on the BBQ.

To make it even more tasty, I added some (Daiya) faux-cheese on the patty when it was close to being done and toasted some GFCFSF burger buns I found at a recent excursion to Whole Foods (from a bakery in Davis whose name I can’t recall at the moment.)

Slam them all together and I presented Bennie with a whopper of a cheeseburger (no pun intended) – and he was in heaven! The poor kid has gotten used to eating plain ol’ patties, with no seasoning, cheese or buns wrapped around it… but tonight, he gorged himself on a huge, fresh, tasty, seasoned cheeseburger WITH bun. His eyes said it all (see the attached pic!)

The smile on my face during dinner was permanent — it’s the little things, but it felt great to let Bennie have something that most people take for granted… but to the best of my recollection, he had never before enjoyed: a cheeseburger.

Adventures in pizzaland

Diet, Personal

February 16, 2011

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Just like his father, Ben’s absolute favorite food is pizza – the kid can eat, but he takes it to a whole new level when it comes to this yummy, tasty treat. Every Friday night (pizza night at my house), he’ll sit down and plow through an entire medium pizza himself (always 3 slices at a time, as there as to be order to everything.)

In the days prior to him moving onto a gluten-free, casein-free diet, Mountain Mike’s pepperoni was a favorite. Once he had to go both wheat (crust) and milk (cheese) free, we found Amy’s Pizza, which was a popular and readily-available gluten-free frozen pizza available in most grocery store shelves. And so it went for a year or two, until my recent re-awakening when it comes to Ben and ASD — literally, one night I was laying in bed and it hit me like a ton of bricks: even though Amy’s Pizza is gluten-freen, it’s still got regular cheese on it. Cheese = milk = casein. I was horrified (and admit to immediately breaking down in tears) – all this time I’d been thinking I was providing a non-agitating, tasty pizza treat for my darling boy, and all this time I’d somehow managed to be oblivious to the fact that he was ingesting MILK every single time…

That weekend I went on a mission to find a GFCF pizza and found another variety of Amy’s Pizza that was dairy free. I was elated, but also curious as to how Bennie would like this new variety, as it had all kinds of fancy foo-foo veggies on it. I shouldn’t have been surprised that pizza is pizza in Ben’s eyes, and he wolfed that one down just as quickly as he ever did.

Then last week, literally just before I was about to put the pizza in the oven, I thought to take a look at the ingredients. Yup, no wheat, no dairy… but wait – what’s this at the bottom? Soy lecithin.

DAMMIT!!

Per my previous post, soy is kryptonite for Bennie, and the fact that soy lecithin also affects him means he’s affected hormonally as well as physically to soy (as soy contains “estrogen” but most are only affected to the soy protein in an allergic reaction.) However, at that point (again – I was literally just about to put the pizza in the oven), I made the decision to let him have his pizza, as I felt that whatever reaction he might have would not be as bad as me taking away his favorite part/meal of the week right when he was expecting it. Boy, did I make an error in judgment there.

This was Friday night. After eating the pizza, he got a bit of a rash on his inner elbows and cheeks, but not too bad. By Saturday the rash was worse and his behavior was pretty stimmy and obsessive (typical behavioral reaction to him eating something he shouldn’t.) By Sunday my poor boy was a mess – the rash was awful and red and itchy, but even worse he was an absolute wreck emotionally – it was almost like he was delirious, unable to focus, talking (and not understanding) in repetitive loops, sad & crying without reason, etc. Just gut-wrenching. All because I tried to give him his Friday night of happiness, fresh from the oven.

Never again.

That night, I sent an email to my favorite local gluten free shop in downtown Sacramento, Gluten Free Specialty, asking for help in buying ingredients to make Bennie GFCFSF pizza, and I quickly received a reply letting me know that they stock all types of tasty foodstuffs that would let me make Ben a fresh(ish) homemade pizza. So today I ventured out at lunch and had the proprietor, Melanie, guide me around her store to help me pick out exactly what I needed: ready-made/frozen GFCFSF pizza crusts, organic GFCFSF pizza sauce packets, GFCFSF shredded “cheese” (not really cheese, but a tasty replacement) and some organic canned items (such as pineapples) to decorate the pizza with.

This Friday I will transform my kitchen into a pizza-making factory and will prepare for my Benjo the most delicious, (near) fresh and safe pizzas for him to wolf down. I’m thinking I’ll even have him help me prepare the pizza, to make it that much more fun and exciting for him (and me.) And I can’t wait.

Special thanks to Melanie @ Gluten Free Specialty for all your help in making this possible – please know that you’ll be making a beautiful young boy very happy, and his father even happier.

First trip to a barbershop

Personal

February 12, 2011

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Hair salons have long been something we’ve avoided like the plague. In years past, Ben’s had some truly awful experiences at them, as (when he was much younger) the sound and sensation of hair clippers buzzing over his head would overstimulate him and drive him nuts, and attempts as he got older typically ended in me dragging a screaming kid out because all he wanted to do was flush the toilets. It was all just too much for him, and even the salons advertising as “child focused” were just too full of activity and over-stimulation for the poor kid.

So for the past year or two, Ben’s had his hair cut at home, with clippers in the bathroom. It’s done the job, but as you can imagine, you get what you pay for – it’s really been more “shearing” than stylish “hair cutting.” I decided it was time to try venturing out again to get him a proper hair cut, so I hit Yelp to search out nearby barbershops (assuming they’d be faster, a bit more low-key, and would be able to buzz him with clippers rather than try to get fancy with a comb & scissors.)

I quickly found Cecil’s Barbershop and the reviews on Yelp looked positive, so I called at 9am on Saturday and asked if I could bring my two boys in for a cut at 10:00am. Appointment set, I let Ben know where we were going and right away he started obsessing on whether or not he’d be able to go to the bathroom there. He got pretty anxious for 5-10 minutes, which started to make me very nervous and wonder if I’d made the wrong decision to try this. I sat down and wrote out a social story for him (which is simply a series of simple lines about what we were going to do – i.e. “I am going to the barbershop. I will get my hair cut first. After my hair cut, I can use the bathroom 1 time. I will listen and not yell or cry.”)

We got to Cecil’s just before 10am – turns out it’s a converted house in Citrus Heights, which made me feel much more comfortable, as it’s far more low-key than a salon, and infinitely less chaotic than a child-focused hair place. Cecil (the proprietor) said his son Evan could take Ben right away, so Ben went in, sat down, and Evan got ready to go to work. First thing Ben told him was “no scissors” (not sure why – scared of being hurt? cut? – but Evan said, “No problem – clippers only.”) I told Evan that Ben was on the Autism spectrum (figuring I should be proactive in case of things going bad), and without even batting an eye, Evan replied, “No problem – I have the quietest clippers in the world.” That instantly set my mind at ease, as you never really know how someone is going to handle the mention of ASD, especially at a low-key barbershop that probably doesn’t see too many kids on the spectrum walk through their doors.

The haircut went so well – Ben was calm, quiet and even a bit chatty with Evan. I was so incredibly proud – all of my initial fears and anxiety disappeared, Ben did great and ended up with a really sharp looking ‘do. Cecil’s Barbershop will now be part of our regular rotation and I’ll be bringing the boys there monthly going forward.

Here’s to my boy Ben – so, so proud.

Addendum: in all my excitement, I forgot to mention that the bathroom was NOT a problem @ Cecil’s for Benjo — I think the fact that it was set up like a house (with a “regular” bathroom) and that there wasn’t the usual hustle & bustle we find at most public places (stores, restaurants, larger hair salons) helped to set his overactive mind at ease. He went to the bathroom one time after his hair cut and then sat and waited patiently while his brother got his hair cut. Pretty amazing, and yet another reason why we’ll be back to Cecil’s for haircuts going forward.

This is what its all about.

Personal

February 9, 2011

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My son the cheater


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Tonight was an exceptionally great night with Bennie… With he & his brother having been at his mom’s since Friday, I was very excited to go pick them up after work and bring them back to my house. As is the norm, Ben was a bit angsty when I picked him up (transitioning is not so easy for him, plus I like to think the emotional excitement of seeing me and coming back to my place is a bit overwhelming for his senses) so he’s usually a bit loud on the drive back.

Once we got back to my house and the boys gave my fiance their big hugs and settled in for dinner, I was captivated by Bennie… He’s always a great eater, and loved the tasty GFCFSF beef veggie stew we made for the boys in the slow cooker, but the usual hyperactivity or giddiness that typically accompanies mealtime wasn’t present tonight. He wolfed his food down (per usual), but was quiet and happy while doing so. When he received his usual prompts to “eat slowly” (geez that kid can eat), he didn’t bark back as he normally does, but listened… and ate slower. He was also tickled pink to get to drink some new chocolate almond milk (2 glasses worth!)

Once dinner was done, I was so excited to surprise him with the special treat I had found for him: hemp vanilla ice cream! I’d tried every variety of non-milk ice cream I could find – rice, soy, tofu, coconut – but each would cause either physical reactions in him (rashes) or lead to emotional outbursts. I’d read about “Tempt,” a hemp-based ice cream, and knew that he had seemed to enjoy hemp milk in the past, but hadn’t been able to find this product at any of my usual shopping haunts. However, I was recently able to pick some up at Whole Foods and I was very excited to get to let Bennie try yet another type of his favorite snack food. (You wouldn’t believe how rough it is to not be able to let your kid eat ice cream – every kid should get to enjoy that simple pleasure…)

His eyes lit up, he raced over to the table with his bowl with eager anticipation, and he devoured it. Then the attentive wait began… Rash? Hyper? Screaming? I am so overjoyed to say that none of those typical symptoms appeared – the Holy Grail of GFCFSF had been found!!

Even better (icing on the proverbial cake): we also noticed that he was more communicative tonight than usual, asking questions and putting longer sentences together. For example, when I showed him the ice cream, he asked me where I got it from. Read that again: he asked me where I got it from. Could this be the (positive) effects of Respen-A (which he’s been on for 10 days now?) I hesitate to get too excited or read too much into it just yet, but it was a very positive observation nonetheless.

We then took the boys to play in the playroom, with Bennie and I playing “Headbands,” a fun thinking game I got him for Christmas in which the players put a plastic headband on their head and place a picture card in it (without looking at the image) and then ask for and respond to clues from the other players. It’s been fascinating to watch Ben’s mind work as we feed him clues and help him guess “who am I?” and then how he tries to do the same for other players. He was on fire tonight, banging out correct answers to his cards, but my proudest moment came when he wasn’t sure what card he had on his head, but had the presence of mind to lean back and look at his reflection in the glass cabinet door beside him. That amazing little bugger cheated! I cannot express how proud I was in that moment – he had the realization that he could see what the card was and then use that (cheating) edge to correctly say what card he had in his headband. I wish someone could have taken a picture of my face at that very moment – it was a mix of excitement, glee, pride and sheer exuberance.

We then went and tackled his homework – 1 sheet of simple math addition problems and 1 sheet of reading comprehension. He nailed both – more calm and focused than I think I’ve ever seen him while doing homework (no frustration or anxiety whatsoever.) I swear he was more thoughtful and engaged than usual, especially with the reading comprehension, which is never easy for him, as he can read pretty much anything, but doesn’t usually retain the knowledge of what he read… but tonight seemed different. Tonight he was able to correctly understand and assign different names under the categories of “people, pets or places.” I was proud, and amazed.

Finally, we finished the night by bouncing a plastic ball of the wall back and forth, with him knocking it out of the air and/or kicking it (usually straight at my head), and one time he even motioned for me to cover up and protect my face before he kicked the ball at about 100 miles an hour at me. Again: another indicator of Respen-A helping his brain be more cognitive? Perhaps, but another exciting observation either way.

What a fantastic, amazing evening on all levels. A happy, beautiful kid got to enjoy some tasty kid treats (chocolate milk & ice cream!), had fun (and cheated!) at a game, hit a homerun with homework, and did not display any of the too-typical outbursts of emotion we typically have to tip-toe around in an effort to avoid.

Tonight was great, truly great. Here’s to working towards a repeat tomorrow, and the day after that, and the day after that. I’m not so deluded to expect that this will be the norm every night, but tonight proved that his anxiety and irritability are not constants, but rather seem to be reactions… So continued attentiveness to both his diet and our interactions with him can only help to make tonight more the norm.

And that is ridiculously exciting.

Soy bad

Diet

February 7, 2011

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While I have long since taken this knowledge for granted, most people are surprised to find out that many kids on the Autism spectrum have major dietary sensitivities – especially to gluten (wheat) and cassein (milk) – and that removing those from their kid’s diets (the infamous “GFCF diet”) can result in remarkable behavioral improvements in their children. I’ve seen it first-hand in Bennie, who has been on a GFCF diet for years now. Before (and now, if something he shouldn’t have inadvertently slips into his diet) the result could be remarkable: near-immediate mood changes (typically extreme hyperactivity and/or irritability), digestive problems and – especially when it comes to milk products – a physical rash (usually on the insides of his elbow joints and cheeks.) There’s an entire industry of GFCF products available to allow kids with that type of dietary sensitivity still be able to eat and enjoy “regular” food (as well as kid-friendly junk food), so it’s actually not as difficult to manage and maintain as one might assume.

Further complicating this, however, is that some ASD kids also have soy sensitivities. A great overview can be found here, from which I’ll excerpt the following:

Soy beans are broken down into powder, oils and additives that add protein and flavor to commercially prepared foods. Soy is one of the eight most common food allergens in the United States, according to the University of Maryland. Soy intolerance differs from soy allergy. A true soy allergy involves the immune system recognizing soy protein as a foreign substance and trying to fight it. Soy intolerance does not involve the immune system. Instead, the body may have trouble digesting soy or find it irritating to the digestive system, resulting in uncomfortable symptoms.

Ben is one of those lucky kids who also is intolerant to soy, which does necessitate the need for me to be far more informed as to what GFCF foods I buy for him (as soy is a common substitute in GFCF foods.) As part of my new/more recent learnings into the wild world of Autism, I discovered that many GFCF products may not contain (regular) soy, but do contain something called soy lecithin:

Soy lecithin (E322) is extracted from soybeans either mechanically or chemically. It’s actually a byproduct of the soybean’s oil. Some people use it as a supplement, because it has a high value of the nutrient choline. Choline is good for heart health and brain development. But that’s not the reason soy lecithin is used as an additive in foods. It possesses emulsification properties. This means it can keep a candy bar “together” by making sure that the cocoa and the cocoa butter don’t separate. It is also used in bakery items to keep the dough from sticking and to improve its ability to rise.

Apparently, most people with soy sensitivities have no issues with soy lecithin… however, it would appear Benjo is not one of those lucky few. On Thursday, I gave him a couple new GFCFSF “Oreo”-like cookies I bought for him (again, trying to let him be a kid and eat semi-typical kid junk food.) The cookies did contain soy lecithin, so this was kind of a real-world experiment to see if he would have a reaction, what kind, how bad, would his diet have to be even more restricted, etc.

About an hour after eating the cookies (just 2 small ones), a light rash appeared on his inside elbow joints and cheeks – not bad, but noticeable. If that was as bad as a reaction as he’d have, however, I thought this could mean he could eat from a wider variety of foodstuffs.

Not so lucky, as it turns out.

Saturday night was a rough one. His mom reported to me that he had a really, really “off” night – very irritable, emotional, sad… much more than usual (i.e. outside of what we might consider “typical” outbursts by Ben.) I initially expressed skepticism that it could be related to the soy lecithin, as a few days had passed from when he ate the cookies (just 2 of them, dammit!) But his mom assured me he’d not eaten anything else outside of his regular GFCFSF diet, and as it turns out, bad reactions to soy lecithin can typically come many days after ingesting it:

Intolerance to soy protein may occur immediately or occur several days after ingestion. You may experience changes in mood or behavior after consuming soy protein if you are intolerant. Symptoms may include irritability or nervousness or depressed mood, according to a 2007 article in “Living Without Magazine.” Infants intolerant of soy may exhibit fussiness, irritability or discomfort.

Hard to argue with that. Unfortunate – not only that I’ll have to go through my pantry and toss out numerous tasty-looking foodstuffs I’d recently purchased for my Bennie, but more importantly it means that Bennie may not get to enjoy quite as wide a variety of foods.

Still: it’s a positive, nonetheless – now I know more of what he can’t eat, and I can shop (and, hell, bake/make) yummy foods that he can eat, enjoy and not have bad reactions to.

The never-ending learning process continues…

I love you Benjo.

Personal

February 2, 2011

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My darling boy,

Words could never express just how much you mean to me. I still remember the excitement I felt when you were soon to arrive into this world, and the sheer joy and elation that accompanied your delivery into my arms. To look down at this amazing, wondrous, remarkable little child and know (but at the time not be able to fully appreciate) that my life had forever changed was a realization that humbled me on that special day nearly 8 years ago… and continues to resonate with me today.

I know how tough things can be for you sometimes. I know your days are far harder than anyone – your daddy included – could ever imagine having to deal with. I know your schedule is terrifyingly full of school, special programs, therapies, routine, (forced) order, medications, schedules, rules, can’t-have’s and constant “you need to do this.” Any “typical” child would struggle under the sheer weight of all you’re forced to endure, so the fact that you have to handle all that you do with your special challenges is even more difficult… and makes me empathize with, and love and respect and admire, you even more.

Do you have any idea how special you are? Do you know just how amazing you are? You have the warmest, most loving and trusting soul of anyone I have ever met. Even with all that you have to deal with, you are always so quick to smile, so quick to hug, so quick to trust, so quick to love. No one I know emanates as much radiant warmth as you do, and I wish I could have even a tiny portion of the joie de vivre that you have.

I know things aren’t always easy. I know there are days when all you can do is yell, or cry, or lash out and try to quell the tempest in your head. Please know that I will always do whatever I can to help you do so. I know I’m not always as patient as I should be, but I’m working so hard on that. I know all too well that there are times when we all just need to let it out and have someone there to take us in with a warm, loving hug and reassure us that “it’s all going be alright…”

… and Bennie: it’s all going to be alright. I’m here for you, now more than ever, and I am going to do anything and everything I can to help you smile. You are beautiful, you are amazing, you are loved, and I am going to make sure you know that each and every day.

“Welcome to the club”

Personal

February 1, 2011

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I happened across this amazing blog by an amazing woman, and her nearly 2 year old-post (perfectly) entitled “Welcome to the Club,” written for parents of kids diagnosed on the Autism spectrum.

This post is incredible, heartfelt, sincere and empowering. I am floored by the sheer power of her words and how perfectly she captures the emotional whirlwind that comes along with an ASD diagnosis.

Here’s how she ends her blog post, and brings tears to my eyes in the process:

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

An amazing read – be sure to check it out.