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 autism.com … 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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Gluten Free / Casein Free / Soy Free (usually) foods that we like

December 11, 2007

I’m going to try to put together a list of GF/CF/SF foods that we’ve been using for our nephew J (who has Autism). Hopefully, this gives someone a head start on their own GF/CF adventure.

Keep in mind that ingredients change over time, so always do your own homework and call the company (almost all products have 800 numbers on them now) and verify everything. I spent a few hours shopping the stores and calling on my cell phone right there in the aisle. Just do it!

Milk Substitute

We’ve tried rice milk (often not “safe” per the packaging), almond milk, hazelnut milk, even hemp milk (can’t do soy milk). We’ve settled on Almond Breeze almond milk by Diamond. They have a sweetened (with evaporated cane juice, not sucrose) and non-sweetened. I prefer the sweetened, my wife prefers the unsweetened (I think it tastes too nutty, where the sweetened tastes more like 2% milk to me). J seems to like either, but we bought a bunch of the sweetened at the Vitamin Cottage when they had a per-case deal. We use the vanilla flavor for use on cereal or cooking (it’s a bit more watery than 2% cowmilk and not enough fat to make a good binder, tho) or just drinking. We use chocolate flavor for drinking because he (and I) like it! We also found some “juice box” sized containers from Pacific that we use for travel, when we can put it in a sports drink bottle for him.

Pasta

J *loves* pasta, and I can’t blame him! At first, that seemed like one of the harder ones to solve, but actually, I think we’ve found some really good substitutes. There are some that are made from brown rice that are very popular, but I actually don’t care for them as much (will get the brand some other day).

The ones we use the most are made by Mrs. Leepers and are made from CORN. They have corn pasta spirals that work very well for us, and he likes them with “butter” sauce (Fleishman’s unsalted margarine sticks, yellow box, green ribbon) or red sauce (just a decent tomato sauce that is GF/CF/SF).

Mrs. Leepers also makes a tri-colored radiator pasta (I think it’s brown rice based) as well as a tri-color spirals (may also be rice based) … he likes both of them, too.

Oragam makes some nice products as well as Dr. Schure (forget the actual spelling). More info on them later.

Hot Dogs

What kid doesn’t love hot dogs? Normally, we’d head right for the Hebrew Nation product, as I think they have the best taste, but they use soy in their products. If you are only on a GF/CF diet, get Hebrew nation, but if you are also SF, look for Bar-S brand. We’ve found them in Safeway, King Soopers, and even Walmart. Per their website, all of their products are GF/CF/SF except for their corndogs.

Butter / Margarine

So, no milk products, so butter and all of its friends are right out. Even a lot of margarines have soy in them as an emulsifier. We found Fleishman’s unsalted margarine sticks (yellow box, green ribbon) is safe, per the manufacturer. It is unsalted, so we just add some kosher or sea salt to the mix and it all works out. It doesn’t really add the qualities of butter, as it melts more into just an oil, so that’s a little disappointing, but considering we can’t do milk products, cream is pretty hard to come by.

If you can do soy, there are a lot more choices out there, but we don’t so I can’t really tell you about them.

Cheese

Sorry, we’re at a dead end here — we’ve only found one thing that was GF/CF/SF and they wouldn’t even use it on Fear Factor.

Juice

Most juices are OK, but you have to be careful with anything using artificial coloring. Some artificial coloring isn’t GF, so we just stick with pure products — besides, they taste better. Our apple juice has “apple juice” in it. Simple, eh?

Meat

Most meats are OK, but deli meats (roast beef, turkey, etc) may have non-GF/CF safe ingredients. Boars Head is safe per the manufacturer, and I think it tastes better than a lot of the other brands out there (bonus!). Also, we’re not willing to try rotisserie chicken for the same reason … it’s too hard to know what the seasoning and prep ingredients are. Most seafoods seem to be OK, in the unseasoned state … anything that is a “prepared” food, do your homework and error on the side of caution.

Breakfast Cereal

We’ve tried a few of the GF/CF cereals out there and the best (and most kid friendly) we’ve found is by Envirokidz. The kids like:

  • Gorilla Munch (like Kix?)
  • Koala Crisp (Coco Pebbles)
  • Amazon Frosted Flakes

They didn’t care for the Panda Puffs (peanut butter), but I liked them. They are very good cereals made from simple ingredients (evaporated cane juice instead of sucrose again) and taste very good. NOT ALL ENVIROKIDZ CEREALS ARE GF/CF!! Be careful and read the labels.

We tried a granola type cereal and it just tasted and felt like clumps of sawdust.

Snacks

Well, cereal is always easy, and there are some very good GF/CF “cereal” and fruit bars out there. Gluteno makes some, but double check the labels. LARABAR bars are very, very good and are GF/CF/SF/kosher/etc/etc … just simple, pure ingredients.

Popcorn! We buy Safeway’s store brand *organic* microwave popcorn (unbuttered). Simple ingredients, and I confirmed with the 800 number they were safe. This popcorn tastes so good, in a blind taste test, you’d swear there was butter on it. J has a sandwich sized ziptop bag of popcorn in his snack box at all times (unless he’s just eaten it!).

…more to come…

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Our experience with Gluten Free / Casein Free and AUTISM

December 11, 2007

So, we’ve been hearing about the positive effects that a Gluten Free / Casein Free (milk products) diet can have on kids on the autism spectrum, but we like to try to make only a few changes at a time, so we can observe the results as accurately as possible. We have some family members with Celiac disease, so we are familiar with the Gluten Free restrictions, but Casein Free is a new challenge for us.

Even worse, some of J’s favorite foods include Mac & Cheese, breads, cheese, MILK (glug glug), and more pasta. See the problem here?

To add even more complexity, there seems to be some concern about eating Soy as well, so we’ve attempted to eliminate that as well. Well, that makes cheese substitutes just about non-existent. We did find one almond cheese that did not appear to have any casein or soy, and it tasted … well, bad.

So, we finally jumped in the water, and it was *not* easy. But, if there was a chance that this could help, even 10%, it would be completely worth the effort! We started poking around in August 2007 and seriously started implementing it in September 2007. They recommend you don’t try to go “cold turkey”, but we worked around that by allowing some comfort foods that we couldn’t eliminate immediately anyway. It seems to have worked out OK.

One thing that we do is we taste *everything* we give to J … if we wouldn’t eat it, unless he says he likes it, we don’t make him eat it.

Overall, we’ve been able to replace his diet with on that is GF/CF/SF (soy free, for the most part), and the results seem to be very encouraging. Just over 3 months later, he does seem to be more lucid when he communicates,;we are seeing more spontaneous conversational communication (not just stuff like “school bus!” when he sees a school bus, but real conversational bits); he’s “home” more often and has been able to accommodate more intricate tasks requested of him; etc.

Some of the things that he’s done just out of nowhere makes your jaw drop — it’s amazing.

Now, lately, he’s been in a bit of a funk because of the transition back to the parents, but when he’s not in the middle of a regressive behavior, his skill performance has definately increased. Also, we do expect regular progress because we *know* he’s capable of mainstreaming — it’s just a mater of work on everyone’s part to help him get there, but the progress he’s made in some areas does seem pretty encouraging.

Of course, all of this is still purely anecdotal evidence at best, and we’re trying to be as objective and pessimistic as possible, but we’re still pretty happy. 2-3 word phrases have become 4-5 word phrases in short order, and although his need for prompting has remained fairly high (which we attribute to stress and anxiety from the transition and uncertainty), the intensity of the prompt (gesture or a single word vs a phrase or full sentence or physical prompt) has greatly reduced.

We’ve been doing as much as we can to work with the parents to find foods that he likes and are easy for them to prepare … we cook a lot at home, but with their schedules, that’s not as likely, so we are trying to help them find foods that will work, rather than them put him back on a McD diet out of convenience.

We have a Whole Foods / Wild Oats that we shopped at a lot to get started, but we’ve been able to find more products at the local Safeway and King Soopers, too … also at the Vitamin Cottage (locally owned chain) as well as some Internet mail order sites. I probably should do a separate post for the foodstuffs, as this one is already long enough, plus I think I can edit it after the fact to modify the list.

Short story, we think it worked for J. I don’t know how much time we’ll get with him after the transition, so I’m not sure if we’ll be able to observe his behavior and also get accurate data on how his diet maintenance has been going, but if I do, I’ll post updates.

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Our adventures into AUTISM (and little kids again)

December 11, 2007

Here’s the quick(?) background:

We have in our care our great nephew J and his little sister A, and he has been diagnosed with Autism since 20 months of age. He came to us when he was 3 3/4 years old (A was only 5 weeks old) for the Summer of 2006. The goal was to help out his parents get back on their feet and get stable again.

Sadly, J had not made much progress between age 20 months and 45 months (3 3/4 years old) … he was still largely non-verbal, poor gross motor skills, very poor fine motor skills, not potty trained, etc. A was born slightly premature, and spent a few days in the ICU and was on oxygen for a few weeks after coming home, and was under 8 pounds when we picked her up.

We hit the ground running as best we could (we called everyone we knew who might be able to give us some insight on dealing with Autism during our 10 hour drive to and from New Mexico … I’m sure T-Mobile was upset we were getting lots of free weekend minutes!). We networked out with the local groups … more on all of that in later posts, I hope. Basically, we did everything we could in short order.

Within 6 weeks, we had him potty trained, starting to use more words than jargon (although not all that intentionally), and we started to take advantage of his echolalia to teach him words and enunciation. Also, he exhibits traits of Gestalt learning (repeating phrases verbatim, but not understanding they are composed of individual words). So, rather than just teach him “yes” and “no”, we taught him “yes, please” and “no, thank you”. To him, it was still just yes and no, but to others interacting with him, he appeared to be more polite. You would be surprised how much extra help and attention that has earned him. Also, another big plus for him is that he is extremely social and will reference (i.e. look in your eyes and acknowledge) you.

We also nearly doubled A’s weight in the first two weeks. Not surprisingly, she became much more lively and vocal (and nowdays, she’s quite loud and extremely active!).

At the end of August, right near J’s birthday, we had his annual developmental evaluation done by Developmental FX (a great team over there), and much of what we learned from them helped everything suddenly make sense. J is bigger than his chronological age … he’s always been about 1 year bigger (not fat or “big boned”, but actually 1 size bigger), so it was hard to see through that and recognize his behavior for his mental age — which they diagnosed at 20-29 months (for the various disciplines, speech, gross and fine motor skills, etc). Suddenly, it made sense! He was throwing 2 year old temper tantrums and performing actions at a 2 year old level.

Now that the lights were on for us, we were able to re-calibrate our efforts and stop trying to teach him anything we could, but actually tailor our our efforts to bringing him up from that targeted age range.

In order to make ourselves more effective, we enrolled ourselves in a Hanen “More Than Words” class put on by a local Speech-Language Pathologist (SLP), Sheila Goetz. It was excellent (more on the class in another post, too). We were able to clearly see the techniques that we were already trying to use, but learned out to fine tune and focus them, as well as a bunch of new ideas — it really made a positive effect on our ability to help J learn to communicate!

We worked very hard and were able to make pretty significant progress by the end of the summer, the parents agreed with the extended family that it would be best to relocate up here to Colorado and take advantage of the environment and networking we’d established for the kids. They moved up in September and October of 2006 with the intent of getting settled quickly and transitioning the kids back ASAP.

At this point, it was Fall 2006, and the parents still weren’t quite ready to receive the kids back yet. We remained the primary caregivers and now we are 19 months later and we think it is time that we try to transition the kids back. We certainly wouldn’t mind if they stayed forever, but they do have parents who love them and we have all been working toward this goal of reunification for quite some time.

We have made tremendous progress with J and his skills … we recently had his annual developmental evaluation done (by Development FX, of course!) and are waiting for their report. We have been keeping a close eye on A and have had her evaluated at 3 months, 6 months, and then have completed the parental self-evaluations for her every 2 months or so until her recent 18 month evaluation (which J’s doctor said she looked like she was good or ahead of her development). She is still not out of the woods yet, as it seems to be a more frequent occurrence that kids hit 18-24 months and suddenly have the onset of Autism.

Otherwise, she has had the benefit(?) of all of our training, research, and working sessions with J … much of our work has bled over to her, or we naturally use the techniques on her. At 19 months of age (almost), she has over 150 words in her vocabulary, she communications intentionally, and has excellent cognitive skills (can follow 2-part directions, figure out the better route around objects or obstructions to get to her target). She is also very social and caring, and does pretend-play very well. She would be potty trained by now, but we’ve had some setbacks related to some transitioning with the parents (not sure why, but that seems to be the trigger to regress).

They are both *so* smart and beautiful kids, and we can only hope that we’ve been able to help them build a solid base that they can continue to grow on.

Over time, I hope to post more of our adventures, people met, lessons learned, in hopes that it may help someone else who finds themselves dealing with the mystery that is Autism.

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