Things Are Not Always What They Seem

April 8, 2008

OK, it’s been way too long since my last post … much going on, but this post will be short and about something else!

I was shopping at Sam’s Club the other day and in the freezer section, I came across a “seafood mixture” … ideal for Paella!  Yum!

So, what’s the problem?  GF Paella should be pretty easy, right (yellow rice + chicken (in our version) + seafood + some GF safe flavoring sauces) … nothing illegal there.  If you are doing CF, make sure you don’t add any butter or any other flavoring agent that would be illegal.

Here’s the problem – out of habit, I checked the ingredients list.  Yeah, the ingredients list on a bag of mixed seafood … how exciting could that be?  INCLUDES WHEAT!  What???  Yep, nearly made something deadly for my grandmother (86, frail, and a Celiac).  <sigh>

Anyway, today’s lesson is READ THE INGREDIENTS ON EVERYTHING.  No matter how trivial it may seem.

Proof That Autism Can Be Defeated!

January 16, 2008

Ok, maybe not completely defeated, but the news we got today just reaffirms my belief that hard work, building a great support team, and aggressive therapy can make the difference. That said, did we do everything possible? I don’t think so, but then again, if you think you’ve done it all, maybe you are missing something else. To put it in a sports metaphor, go 110% and leave it all on the field … but know that there is always something more you can challenge yourself to do better next round.

We followed up with J’s developmental evaluation (from early December 2007) with the therapists today. The ladies at Developmental FX are just awesome, and they really care about what they do. They did his developmental evaluation back in August 2006, where they couldn’t even do age appropriate testing (he was physically 4 years old) and pegged his development at 22 to 29 months of age (mental, speech, physical, etc). Keep in mind that those numbers were similar to the speech eval that was done at University of New Mexico Hospital in March 2005, and he had made _progress_ in the 3 months with us prior to his 2006 eval. Scary, eh?

Well, we have the “final” report, although we would like to work in inputs from J’s biological parents (where he is now), but they still haven’t submitted their forms or made an appointment to meet with Developmental FX yet. In a nutshell, Developmental FX was very happy (and maybe a little surprised) at how much J has grown. They now estimate him to be around the 52 month (4 years, 4 months) developmental stage. At the time of the eval, that puts him only about a year behind!

Through hard work, a great support team (both professional and personal), LOTS of positive re-enforcement, education (for us and J), a (very) little medication, the GF/CF diet, and just plain challenging him to develop and grow, we managed to do over 2 years of developmental growth in about 15 months. Something like 176% growth and developmental rate? I’ll take that! I think his rapid ascent makes it pretty obvious that _he_ was not the problem, but rather it was his old environment and lack of a good support team. Reading his old reports, he had some pretty good early intervention support, but somehow, it just didn’t stick.

Could *we* have done better? Probably! We did have quite a few hiccups along the way, and other external events that made it difficult for him to focus and increased his overall anxiety. As we got closer to what became the transition back to his parents, his anxiety level was visibly high — huge increases in his door fixation, thumb sucking back in full force, even some behaviors that were completely gone came back (like the head shaking) and more frequent hand flapping. He even lost some of his language and looked “lost” more often. It’s really sad to see a child fall apart right in front of your eyes.

Naturally, this report is bittersweet. We are very proud of the work we have done, the progress we’ve made together, and the foundation we’ve helped him build. At the same time, we can only hope that he continues to get the same support and dedication that we’ve given him over the last 20 months. Now that we are no longer directly in the picture, we have to rely on information that trickles back from his support team as well as others who we have crossed paths with and have taken an interest in him (he’s a really likable kid). As much as we’d like to continue to be involved in his day-to-day, the emotional trauma and mental distress that bouncing between the households was causing would more than counteract any benefit we could add — and that’s something that we think and grieve about every day.

We still believe that J has the ability to be mainstreamed, but he still has a long way to go. We know that his parents are busy and work and all of that, but we hope they can find a way to keep giving him the attention he will need to succeed and have a quality life (meanwhile, not ignoring his little sister, A). If they don’t help him succeed, it will be everyone’s loss — he’s a bright kid and has a lot to offer.

The take away from this? If you have a child with autism, DO NOT GIVE UP! Anything can happen, and if you WORK HARD and be open to new ideas, talk to your community and support professionals, build a network (personal and professional), you have a great chance of giving your child the ultimate gift — a quality, and independent life. There are no “do-overs” or “I’ll do it tomorrow”, only do it now. To quote our Jedi master Yoda, “there is no try, only do”.

Seriously, though, you are your child’s only true advocate. You may build a fantastic support network, but they are only there to support you help you and your child. The effort you put in will bring you rewards that money cannot buy.

Whether it is or isn’t someone’s fault that your child has autism, or that $deity is to blame or whatever is all TOTALLY IRRELEVANT. The issue at hand is WHAT ARE YOU GOING TO DO NOW! And that can only be TAKE ACTION. Time is running out, so get to it.

We did it in a short time, with no forewarning, no training, heck, not even a clear timeline or future. If we can, so can you.

Love your children and work your a$$ off now … you can always sleep next year. 🙂

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More Gluten Free / Casein Free (GF/CF) Links Added!

January 14, 2008

Thanks to a friend sending me a link to Hormel’s site, I finally got motivated to add a bunch more of my GF/CF links to my blogroll.

I hope some of these help you find more resources out there, but BE CAREFUL — manufacturers can change ingredients, manufacturing facilities, and processes at any time. Also, the web is never the final authority — CALL or WRITE the manufacturer or distributor and get the bottom line (in writing, if possible) from them.

Also, keep hounding your local grocery store to carry these products. Thanks to pressure from “the people”, Deby’s Gluten Free (soon to be renamed as “8 Free Foods”) will have a handful of products in our local King Sooper’s stores.

King Sooper’s also carries Boars Head meats, most of which are GF/CF (according to the rep I talked to a few months ago). Unfortunately, the KS near us doesn’t stock Boars Head yet, but we’re pestering away.

Also, in case I hadn’t mentioned it yet, Smuckers Jellies and Jams are supposedly all GF/CF (again, spoke to rep back in Sept 2007, so please re-confirm), as are Welsh(?) juices.

Sadly, our involvement with the GF/CF world will be largely from the outside looking in now. J and A have been rather abruptly transitioned back to their biological parents (for various reasons, not the least of which was the emotional trauma and mental/developmental damage the kids were experiencing from the bouncing between very different households). The generally accepted presumption was the kids were going to transition back to the parents at some point, and due to a series of events, that transition had to be a little more quick and final than expected.

To say we miss them dearly would be a gross understatement, and we’ll be cleaning and re-organizing the house for many weeks to come. They spent nearly 20 months with us, so they have left a very significant footprint in our home and hearts.

This saga is not over yet, as we still have court assigned custody issue to work out (among other things), and I think the training and life experience we’ve had through this will keep us active in the Autism advocacy arena. But for right now, we need to spend some time healing before we can engage again.

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More Gluten Free / Casein Free Info And Links

December 12, 2007

Here are some more quick notes from some documentation that I had created for the caretakers involved with J:

  • No more eating out (there are a *few* safe restaurants, but we’re being very selective because of cross-contamination … if the owner/operator has Celiacs disease, the chances of it being safe are *much* better, as they should understand the consequences) … the CF part, however, is less common
  • No more McD’s chicken nuggets, fries, etc. no more pizza, mac-n-cheese, or cheese for that matter
  • No more cheese sticks, singles, or BUTTER
  • No more milk or milk products!
  • MINIMUM soy products … soy supposedly has a chemical makeup very similar to casein … in a few months, if he’s showing improvement, and it looks like his “Leaky gut” (if that’s what he has) is much more healed, we may use some additional soy products
  • We have to be *extremely* vigilant with his eating when not at home (i.e. school, therapy, etc). We are preparing a letter detailing his GF/CF diet to release to all of his caretakers. Luckily, most of them are familiar with the diet, so it’s more a notice than to educate
  • We’ll have to start making his lunch and snacks to send with him to school, too
  • There are quite a few GF products now in the specialty sections as well as the “health”-type stores … HOWEVER, they may not be CF, so we have to be extra careful
  • Certain cookware will have to be for J’s food only (like anything cast iron or anything we can’t be 100% sure we are getting completely clean/safe)
  • Even some juice is suspect because of the additives and colorings

Everywhere J goes, he carries his lunchbox with GF/CF snacks in it. That way, if we are delayed getting somewhere, he always has safe foods to eat.

More information and links …

Somewhat understandable article about the GF/CF – Autism connection.

Scientific article with information about the GF/CF – Autism connection.

Food manufacturer in Australia (Whole Foods carries them): Orgran

Deby’s Gluten Free (link) – Local bakery in Denver, CO (but they ship, too) – they also have a small restaurant, and it sounds like they may be changing their name and also getting some products in King Soopers! They already provide product to some local restaurants (like Beau Jo’s mountain pizza), but since we have to worry about the casein free component, eating out is pretty much not happening.

Link to video on Good Morning America here.

Vitamins from Kirkman are recommended in a enhanced dosage by … we ordered a “trial” size of the 2 powders and most of the liquids (except those w/o Vit A & D).

Candia may also be an issue, so, it’s on the hit list after we see how the GF/CF diet goes. Some treatments like ThreeLac seem to get good reviews, but we want to make only one change at a time.

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