Yet another long overdue update…

Misc

April 18, 2011

4 comments


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Yet again I begin a post with “it’s been awhile since I last posted…” and feel the pangs of regret over that fact. For whatever reason, my self-imposed vacation from immersing myself in all things ASD has continued, which is not to say I haven’t been focused on my darling boy, but just that my obsessive reading, exploring, pondering, etc. has subsided as of late, so as not to overwhelm myself as I managed to do a couple months back. I’m still avidly following my many sites and blogs, and bookmarking away (one day I’ll build out the “Links” section of this site), and also buying up damn near every Autism-related book that Amazon.com sells… but they’re piling up, unopened, waiting for me to dive back in (at a more manageable pace.)

But enough of the mea culpas.

Bennie has been doing great these past few weeks – no change in any of his treatments or medications (trying to maintain status quo likely through the summer.) He’s been doing very well at school – still loves going every day, still tells us about who he plays with at recess, what books he reads as part of his daily visits to a “typical” 2nd grade class for reading time, and is always bringing home new songs he learns at school to sing to us around the dinner table or at bedtime. Last week (after a very positive dental check-up), when I was dropping Ben off at school, his school principal approached me in the office to introduce herself to me and to tell me just how great Ben is doing and how much they love him. The sincerity of her words made me swell with pride, as it’s so wonderful to know that others in Ben’s life also see and respond to the beauty and happiness he radiates.

He also (finally) lost a tooth “naturally” – that is, didn’t have to go get a baby tooth yanked at the dentist because the new tooth was coming in at a wonky angle because the baby tooth just wouldn’t let go. The tooth was really, really loose and wobbly, and I was just getting ready to brush his teeth at bedtime. I started to put the toothbrush into his mouth when I thought I saw a blob of toothpaste on his tongue. Just as I put the brush in his mouth, it dawned on me that it couldn’t be toothpaste (as I hadn’t put the toothbrush in his mouth yet)… realized his tooth had come out all on it’s own… and then…. *gulp* He swallowed his tooth! My initial uncertainty was calmed when some quick Google searches proved that it’s not dangerous that he did so, and obviously his body will take care of moving the tooth through him… much to his younger brother’s delight, as he expressed great merriment that “Ben will have teeth in his poop!” shortly.

Food wise we remain on track – very very strict with no dairy, no wheat, no soy, and the results of this strict vigilance are evident daily. Ben simply does not have bad outbursts anymore. Period. He may get grumpy or ornery at times – but who doesn’t after a long day (especially days as jam-packed as his are) – but the lashing out, the screaming, the inconsolable outbursts are a thing of the past. He is always happy, singing, cuddly, affectionate and, even when grouchy, he’s well-behaved. Amazing to see, hard to remember what it was like not that long ago.

He’s also fanatical about basketball – he’s always liked “shooting hoops” and loved playing in his weekend league (which is now over, sadly.) He’d play quite a bit at his mom’s house, so with his 8th birthday coming up (!!), I suggested to my mom that maybe he’d like his own basketball net at my house, which she quickly purchased and had delivered, so it was ready for him when he returned to my place mid-last week. Since then, I can’t even count the number of hours we’ve spent outside, shooting hoops, cheering for each other, (trying to) play games of 21, and just watching him make the most impossible shots with this wholly-unique sideways lob. Kid is amazing.

Amazing, beautiful boy, who continues to do so well and be so full of life, love and happiness. I couldn’t be prouder.

“Not in my castle… ON… THE…. CLOUD!” (Love you Ben)

4 Responses to “Yet another long overdue update…”

  1. MZ says:

    Hey fabulous Dad,

    Are you continuing on Ben’s Respen-A? Are you seeing any change/effect? We wanted to start our son on Respen-A but then changed our mind and started on B12. But I am just curious…

    For our son, we have been on B12 for just about 2 weeks. He MIGHT be showing some positive changes, but I’d like to really see him repeat these positive behaviors before I am certain. Holding my breath for now..

    Another Dad

    • Ben's Dad says:

      Hello hello Another Dad! Thx for your note…

      We still have Ben on Respen-A, and while there’s definitely been no (negative) side effects, admittedly we haven’t seen any huge or overwhelming positives either. In the first couple weeks, I could swear his language got a bit more complex/involved, but admittedly that also coincided with (1) a much stricter adherence to a GFCFSF diet and (2) this ABA therapy focusing on “W” questions at the time. The Respen-A folks did recommend introducing a tiny bit of gluten (even pieces of a cracker a couple times a day) into Ben’s diet, as gluten can help in the absorption of the Respen-A. However, within a day of doing so, the NEGATIVE reactions of Bennie eating gluten were clear, so we stopped.

      As for now, we wait for the new variation of Respen-A to try out and my hope is that it will bring about the positive effects we’re hoping for. If we go a few months and still don’t see any, we’ll then explore alternatives (including B12, among others.)

      Take care, all the best…

  2. MZ says:

    Hi,

    We have tried our son to be on a strict gfcfsf diet, but he is a very picky eater so we sometimes give way by letting him have bread and such. Taking him off of dairy had a very clear positive result and we are strict on that.

    Can you tell us what negative effects you see in Ben when he is allowed
    gluten?

    • Ben's Dad says:

      It’s very common for kids who have sensitivities to certain types of foods to CRAVE exactly that which they can’t have – i.e. wheat and dairy. The important thing to know is that following a strict GFCF diet is actually quite easy, once you know where to look. For example, there are tons of GFCF breads available (you just have to look at the labels), and even treats such as donuts, muffins, corn tortilla chips, etc. The best stores to visit are Whole Foods, Gluten Free Specialty Store (in midtown Sacramento) and even Raley’s has a very good gluten-free section. If you also are trying to avoid soy, that gets a bit harder (as SO many foods, especially gluten-free ones, typically have soy in them)… but again: check labels, and you’ll soon find that there’s so many options out there available to your son.

      The negative effects with gluten are pretty dramatic: physically, he gets a rash on his inner elbows and face/cheeks, but he gets almost immediately hyper and giddy and can’t focus very well. He’s happy, but babbles and giggles uncontrollably and just can’t focus at all. With casein (milk/dairy), it’s similar effects: rash, hyper, giddy. Also affects his digestion. Soy is the worst (for Ben), however, as he gets an awful rash on day 1 & 2, but by day 2 he’s irritable, tired, upset, emotionally distraught, etc. It’s scary.

      It might seem hard to be on a very restrictive GFCF (and/or SF) diet, but if you can see any of those reactions in your son after he eats wheat or dairy, then just remember you’re doing him AND you a favor by restricting. And have fun shopping – there’s so many tasty, yummy options out there for those on a gfcf diet!

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