And this is why...

we usually wait for him to go to bed before we eat food that he cannot have.

Tonight Rod brought home pizza for he and I.   Dominic was just finishing his bath.  he got out, came to the table, said "I want SMELL", leaned over, sniffed daintily, and said "good".

and then he got ready for bed. 

Still makes me sad that i haven't come up with a decent pizza substitution for him...

GFCF Kitchen // Eating out

When you first realize the absolute breadth of feeding your child completely gluten, casein, and soy free, you think you may never eat out again as a family.It is actually very possible to eat out on this diet.  Here’re some guidelines and examples…

First – fast food isn’t do-able, and you shouldn’t eat fast food anyway for other health reasons. So goodbye PopEyes Chicken and Arbys curly fries.  Nice to have known you.

Second, Know your restaurants.  Look at their menus’ online.  Do they have Allergy Free menu items?    Call them before you go, and find out things about them:

1. Do they cook from scratch or are their products premade in a factory and delivered? 
Red Lobster, for example, doesn’t cook from scratch so they cannot accommodate requests to leave ingrediants out.   We once went to Joe’s Crab shack and had an argument with them because they premade all the broccoli and couldn’t leave the butter out. Bizarre thing to premake, if you ask me.  We haven’t been back since.

2. Do they offer allergy free menus?
 I know that On the Border and Red Robin have menus specifically for various allergies.    If they have an allergy free menu, they cook from scratch.

3. Can they cook your meal in a clean skillet instead of the grill (our Red Robin has a dedicated skillet for allergic folks).  Do they have a gluten free fryer? (5 Guys Burgers and Fries and Red Robin do). 

Be very clear up front with the server exactly what you want and what allergies your child has.    BJ’s brewery in Colorado Springs policy is to send a manager by to confirm allergy details before food is cooked which is a nice feature.   For Dominic, I ALWAYS order the same protein regardless of where we are – a plain grilled chicken breast.  Then I’ll order either potato some way or rice (no butter), and a steamed vegetable (no butter).   Most places can do this.  We’ve even managed to get Italian places (Carrabas) to safely feed Dominic.  Chinese and Japanese are harder but if you ask for Fried rice no MSG, no soy sauce, it can work.  The only Mexican that really works is the On The Border kind of place.

4. Inspect the dishes when they arrive.
We learned this lesson the hard way  and now we check all of his dishes for food residue every single time.

GFCF Kitchen Weekday Breakfasts and School lunches

People have a really REALLY hard time when they hear that the first step to recovering their child is the diet. They get completely turned around themselves when they hear No Gluten, no Dairy and No Soy is the starting point. And so one of the wonderful ladies on a facebook group i spend a LOT of time with suggested that it might help if we could all write out what they CAN feed their children. This week I’m running a series of posts as is my contribution to that effort. It is an example week in my kitchen. Now, keep in mind I work all week and so much of my prep work happens on the weekends.

~~~~~

Because I leave for work minutes after  I set Dominics breakfast down in front of him (Rod does the bus routine after I leave), automating breakfast has saved my sanity. He has generally 20minutes or so to eat breakfast every morning

Here’s what Dominic’s Breakfast looks like on the weekdays:

A protein source:
This is always Nitrate/Nitrite free Sausage or Bacon, which I cooked over the weekend and froze.  I pull it out, heat it briefly in the microwave and we’re good.

A carb source
Dominic’s preference is Oatmeal. We use Bobs Redmill Gluten free Oatmeal, and it takes 3 minutes in the microwave. Use a big bowl or it will go everywhere.

Usually a fresh fruit. 
Any kind I have on hand works. His favorite are bananas.

As a note, the adults in the house are responsible for our own breakfasts.  This is just what we feed Dominic. 


Here’s what Dominic’s school lunches look like:
Into Dominic's lunches every day go 2 fruit, 2 vegetables, 1 starch and 1 protein.  All is leftovers in one way or another. I use these lunch containers for the meal, and 1 each fruit and veg stay out as snacks for him.
Here’s what I did for lunch this week (and yes, I line them up on Sundays and do 4 lunches assembly line style.).  He eats this stuff cold, as he doesn’t have access to a microwave:

Monday and Wednesday – 2 chicken legs, 1 C steamed asparagus, ½ baked potato, 1 apple. The snacks were 1 apple and ½ a cucumber sliced.
Tuesday  and Thursday-  ¼ C shredded beef, 1 C steamed asparagus, ½ baked potato, 1 apple. The snacks were 1 apple and ½ a cucumber sliced.
Friday is usually something different because I have only 4 lunchboxes so Friday gets made on Thursday night of whatever leftovers we have around.

We give him another snack when he gets home from school.

GFCF Kitchen / SAD Favorites

So, the standard American diet… hamburgers and fries.  Chicken Casseroles made with cream of xyz soup,  lasagna, enchiladas, sandwiches, chicken noodle soup, chicken fingers… All the things we learned to cook growing up in the 80’s and 90’s and now our kids can’t eat them.  What to do?

I don’t particularly like most premade gluten or casein free products.  They’re generally gross.  There are a few that Dominic likes, tho, and we intersperse them occasionally to help make some of those old favorites that just don’t work anymore.    They are:

Rudi’s gluten free bread

Daiya “cheese”
Glutino pretzels and crackers
Ancient Harvests Quinoa Pasta

So here’s how I’d re-vision each of the above meals, at home in a Dominic safe manner:

Hamburgers and fries – serve the hamburger without a bun (or on Rudi’s GF Bread) with Orieda crunchy tatertots.  That particular brand and type of tatertos are  made with cornmeal instead of flour as the binder and as such are gluten free.

Heinz ketchup is gluten free, but it is laden with corn syrup which is a bad thing. So I suggest making your own

Casseroles made with cream of XYZ Soup:  Instead of putting the meat, starch, and veg together and gluing them together with soup, cook them separately.  Have Roasted chicken leg quarters (toss with salt, pepper, garlic, maybe some chipotle then  roast at 350 until you get an internal temp of 165) with a side of brown rice that you’ve cooked in chicken broth and topped with toasted almonds and a steamed green vegetable.

Lasagna:  Use Rice pasta lasagna noodles instead of gluten noodles.  For the filling, you go mostly ground meat and thawed frozen chopped spinach with a little (like 30% of the total) Daiya mozza flavored shreds.  Layer as per usual lasagna and bake at 350 until done.   If you don’t like Daiya (I personally don’t, but Dominic does), then my suggestion is mix the meat, spinach,  and sauce together and serve over GF spaghetti instead.

Enchiladas:  Make your own sauce – nothing in a can for our kids.    Here’re some options. 

Layer in a pan sauce, lightly fried corn tortillas, browned meat/onion mixture. Daiya cheddar shreds (optional), sauce and repeat until the pan is full.  Cook at 350 until bubbly.

Sandwiches: Leave the bread off and roll the meat around some raw veggies (red bell peppers are great here) and then wrap that all in lettuce and use the Mayo/Mustard as a dip.  Only use real mayonnaise (we like best foods) because the low fat or miracle whip stuff is full of gluten and other garbage.

Chicken Noodle Soup: Leave all “flavor packets” on the shelf in the grocery store. They are all full of MSG (hiding as “natural flavors”) and other nasties.   Take the broth that you made and froze and thaw it.  In the mean time, mince up onion, celery, carrots (and any other veggie you want) and get them sautéing in a pan with olive oil.  Add the broth, shredded chicken from your freezer stash and a handful of quinoa or wild rice or diced potatoes.  Bring to a simmer and let it go until the starch is taste tender.  Add salt, pepper and any other spice that makes you happy.  

Chicken fingers (really anything breaded and fried):  Grind up Glutino Pretzels (or toasted rudi’s gf bread or cornmeal) in the food processor or blender until they are a fine powder.  Put them in a bowl.  Grind a second batch slightly coarser and put in another bowl.  Make an egg wash (1 egg beaten with 2tb or so water).  Season all three with salt and pepper heavily.  Season your chicken tenders (or other protein) with salt and pepper.  Dip in the fine crumbs, the egg, the coarse crumbs, and then put into hot oil and fry until done.   Alternatively, you can put them on a rack over a cookie sheet and bake them until done but the breading won’t stick as well.

GFCF Kitchen Weekday (work day) Dinners

People have a really REALLY hard time when they hear that the first step to recovering their child is the diet. They get completely turned around themselves when they hear No Gluten, no Dairy and No Soy is the starting point. And so one of the wonderful ladies on a facebook group i spend a LOT of time with suggested that it might help if we could all write out what they CAN feed their children. This week I’m running a series of posts as is my contribution to that effort. It is an example week in my kitchen. Now, keep in mind I work all week and so much of my prep work happens on the weekends.

~~~~~


Here are a couple of my go to recipes for weeknights.  They’re fast, they use some of the heavier proteins that I cooked the weekend before, and they’re healthy.   At least 3 nights  a week, tho, are straight leftovers from the weekend or from the stuff we make extra of and keep in the freezer. 


Taco night:
Use the leftover shredded beef or leftover grilled chicken from the weekend,  chop some veggies, and put them in taco shells. Dominic loves fresh avocado on his.

Pasta night
Dominic likes Ancient Harvests Quinoa pasta and I buy it in bulk at Amazon.  I cook regular gluten filled pasta for Rod and I. I made my own pasta sauce this summer from tomatoes in my garden and froze it, but if you don't have time then get an organic GFCF sauce from the store and add italian sausage and mushrooms and green veggie (i've added asparagus and zucchini both) to it.

See my post from a few days ago for a pasta sauce recipe that I stash in the freezer.
I’ll make a salad to go with the pasta and we’re good.

Crockpot night:
BBQ pork - cover a pork butt with homemade GFCF BBQ sauce or 1 jar of GFCF BBQ sauce and 1 jar water before leaving for work. Shred when you get home. Serve with rice and a green veggie

GFCF Kitchen, the Weekend

People have a really REALLY hard time when they hear that the first step to recovering their child is the diet. They get completely turned around themselves when they hear No Gluten, no Dairy and No Soy is the starting point. And so one of the wonderful ladies on a facebook group i spend a LOT of time with suggested that it might help if we could all write out what they CAN feed their children. This week I’m running a series of posts as is my contribution to that effort. It is an example week in my kitchen. Now, keep in mind I work all week and so much of my prep work happens on the weekends.

~~~~~

These meals are GFCF for Dominic, and oftentimes i'll have a non GFCF side for Rod or I. But always have the GFCF for Dominic.

Saturday

Breakfast

Jimmy Dean Nitrate / Nitrite free sausage patty

I buy these in Bulk from Costco and cook them probably once every 3 weeks in the oven. I freeze the patties and reheat them for Dominic, 60 seconds in the microwave

Bob's RedMill Gluten Free Oatmeal

This is cheapest bought on Amazon.  You put ½ C oatmeal and 1C water in a very large glass bowl and microwave for 3 minutes.

Piece of fresh Fruit

  

Morning Prep Work for Dinner tonight:

Into the Crockpot - 1 large beef chuck roast, cover in red wine (or homemade beef broth or water), onions, carrots, celery and water. set on high and let go all day.  Scrub potatoes and set aside.


Snack for Dominic

Fresh Fruit, Raw Veggies, Nuts, tortilla chips are all in rotation here. Generally whatever he’d like.


Lunch (if not leftovers from the night before)

Sunbutter and Jelly sandwich on GFCF Bread (Udi's brand)

Sliced cucumbers,carrots, celery

Tortilla chips



Snack for Dominic

Fresh Fruit, Raw Veggies, Nuts, tortilla chips are all in rotation here. Generally whatever he’d like.



Dinner

Roast Beef and veggies from the crockpot

            Save the liquid (strain and freeze, labelled beef broth). Shred the meat.

Baked Potatoes

            Use Coconut oil instead of butter.

Steamed green veggies (asparagus, zucchini, green beans, peas, etc)

            Season with salt and pepper and coconut oil



Sunday

Breakfast in Bed

homemade hashbrowns

Start your bacon frying in a large skillet.  While that’s going, clean and shred raw peeled potatoes in the food processor, I do 2 small or 1 large potato per person.  Squeeze as much liquid out of them as you can.  Pull the bacon out of the pan and set aside (its not cooked yet, you just wanted the flavor), and put the potatoes in.  This works best in a well seasoned cast iron skillet.  Stir frequently until the potatoes are crispy and brown all over. (45min or so)

bacon
Put it in another skillet to finish it. When done, set on papertowels to drain, wipe
the skillet and use it to scramble your eggs.

Scrambled eggs,
Stir the eggs up with salt and pepper (NO DAIRY) before scrambling.  I always pull Dominic’s out first and  put cheese on whats left for Rod and I.

Snack for Dominic

Fresh Fruit, Raw Veggies, Nuts, tortilla chips are all in rotation here. Generally whatever he’d like.


Lunch

Dinner leftovers


Snack for Dominic

Fresh Fruit, Raw Veggies, Nuts, tortilla chips are all in rotation here. Generally whatever he’d like.


Dinner

Mixed grill
Hamburgers, chicken breasts (marinade in olive oil, garlic, chipotle pepper), GFCF hot dogs, chicken legs (sprinkle with salt,pepper, garlic). We grill enough for a small army and freeze leftovers immediately.


Big green salad

Brown rice (cooked in homemade chicken broth instead of water and topped with toasted almonds)

Steve Irwin's influence

We let Dominic snuggle in our bed in the morning while we are getting ourselves ready for the day, and for the last several months we've been  having him watch Crocodile Hunter with Steve Irwin (out on Austrailia) and he's been really enjoying shows on crocodiles, snakes, creepy bugs, big game animals, etc.

This morning, i called Dominic to come get his shoes on so we could go to the store for something.  he came upstairs, dug under a cushion, and pulled something out pinched gingerly between his thumb and forefinger, held all the way away from his body.  Hm. Okaaaay.  Whatcha got there, kiddo? (I was thinking it was one of his little fidget toys).   Spider, he says.   Then he proceeded to use two halves of one of those containers you get out of a vending toy machine at the grocery store to carefully pick it up and store it

It was actually a (very dead) small black and white spider.

Fantastic.  Not.

GFCF Kitchen / On being in charge

Rereading old posts is always good for perspective.  Especially while I'm working on this what exactly can we feed our kids on a GFCFSF diet  series of posts.

This morning, I want to rewind  back to July of 2011 - so we had JUST started the Unique healing protocol and CD (aka MMS) was not even a blip on my horizon.  This is one of the top 5 ever blog posts I've put out there and I remember the night vividly.   Go read it. Its about my picky eater and getting him to eat.

I don't have to make points like this anymore at all - we do not have food battles anymore.  Dominic, for the most part, eats what he's told to and I don't have to emphasize reinforcers anymore to get non choice foods down.  We tell him to eat and he does.  And Dominic loves zucchini now.

I  say to parents of picky eaters getting ready to start GFCFSF (not parents of children with feeding disorders, big difference here)  and parents of kids who are older and have been used to eating the Standard American Diet (SAD) - you absolutely have to win the first big battle about food if you want to succeed long term with The Diet. The world is not going to end if they go to bed not completely full one night, or if they have their leftovers from dinner that they didn't eat for breakfast the next morning. They have to learn they aren't in charge.  You will not be able to succeed with the GFCFSF diet if you are not the one in charge.

Funny story

With my food posts going out in the mornings for the next week or so, I wanted to be able to still tell you about the other stuff going on, so some days this next week, you may see 2 posts. (Shocking, I know).

This morning, Dominic was sitting at the table slowly eating his oatmeal and the bus arrived for school before he was done.  The exchange went something like this. 

 

Me:  Its time to go, lets get your jacket on

Him:  No, Hungwy, EATING

Me:  But the bus is here, its time for school

Him:  No, No No. HUNGWY (crocodile tears starting)

Me:  how about I bring the oatmeal along (picks up bowl and starts walking)

Him:  (puts on jacket and comes along)

So we walk out to the bus, and he shoves 2 giant spoonfuls of oatmeal into his mouth while standing on the steps to get on the bus, gives me a gooey kiss and goes to sit down. Perfectly happily.

The bus driver and aide were highly amused, and actually asked him if he’d like another bite for the road.

GFCF Kitchen, Freezer stash

People have a really REALLY hard time when they hear that the first step to recovering their child is the diet. They get completely turned around themselves when they hear No Gluten, no Dairy and No Soy is the starting point. And so one of the wonderful ladies on a facebook group i spend a LOT of time with suggested that it might help if we could all write out what they CAN feed their children. This week I’m running a series of posts as is my contribution to that effort. It is an example week in my kitchen.    Now, keep in mind I work all week and so much of my prep work happens on the weekends. So that’s why this series is STARTING with the stash of things  I keep in the freezer for quick go to meals.  



These are the things  that I keep made and on hand in my freezer for easy meal prep

- Cooked shredded poultry.  Either chicken or turkey. I will roast / smoke /grill / poach a whole bird, cool it and shred it, then store in gallon ziplock freezer bags.   I use this for Chicken/Turkey Salad, soups, tacos, just by itself, etc. 

- Browned ground beef with onions.  Just like it sounds – brown a Costco sized package of hamburger meat with a few onions, salt, chipotle pepper and cumin. Drain it, cool it, and store in gallon ziplock freezer bags.  Dominic actually will eat this mixture with a spoon, but I use it as a base for lasagna, shepherds pie, tacos, kheema, etc.

- GFCF Meatballs:  To 1lb of raw ground meat (and I try to have a couple of types together, in like turkey + Italian sausage  + beef the best) add ½ Tsp baking soda. Mix it well and walk away for half an hour.  It does something to the meat and makes it stick together with no gluten required. Its cool.  I add salt, pepper, garlic, ginger and frozen, drained chopped spinach and then roll them out and bake at 350 until they’re done.

- Broth:  Every time I cook a turkey or chicken, I save the carcass in my garage freezer.  When I have enough carcasses, I boil them with veggies and make broth.   I freeze it in quart sized jars.

- Pasta sauce – I make a ton of it during the summer when my tomato plants are producing and freeze it.

Here’s my favorite way to do homemade sauce but its definitely a weekend project:
Into a bowl, put:
Tomatoes – probably a dozen. Wash, quarter
2 onions = peeled and quartered
1 head garlic – separated but left in the skins
Toss it with olive oil
Add salt, pepper and oregano to coat nicely
Put it all on a baking sheet at 250 for 6 hours. Low and slow. Stir occasionally. At the end, pull the garlic cloves out and take the paper off (they’re now roasted. Yum). Put EVERYTHING that was on the sheet into a food processor or blender (might take a couple of fills) and blend to your desired consistency. You can peel the tomatoes or not. Up to you.
To that mixture add browned Italian sausage, and any veggies you want (we love fresh mushrooms) and simmer.
Jar it and freeze it.

Diet as an Isolating Factor

I saw this post another long time Autism BioMed Mama’s facebook feed yesterday morning and promptly thanked her for inspiring a blog  post.

I have a friend who is struggling today with having to turn down a family party due to food/gut issues with her children, and struggling to reconcile family/friends and food. I posted this on her page, but I wanted to share again here, just as another autism awareness FYI. For those of you who deal with food allergies or any kind of diet outside of the SAD (Standard American Diet) diet most people consume, you'll relate all too well. For those of you who are on the outside of it, I don't know if this helps to explain one of the bigger difficulties we face or not. Maybe it will. I'm betting this, moreso than the difficulties of the diets themselves, is one of the biggest reasons many people aren't able to stick with it until they are well again.

I think this one thing, in a nutshell, is the hardest part about the diets we do...whichever diet, not choosing the foods themselves, not anything else. The figuring out what to eat is the easy part in this, which says a lot. So much of food is wrapped up in social functioning, love, families, connectedness, whatever, that it feels like you're having to make a choice to cut off from all of those good things, the emotional component that typically come with sharing a meal, just for the sake of trying to physically stabilize/not get sicker, etc. It shouldn't have to be a choice between one or the other, as both are equally important. It isolates us, and it shouldn't, but it does. It's the one thing most people who go through this are aware of, but rarely talk about.

 Dominic has been eating Gluten, Dairy and Soy free as well as artificial colors / flavors / preservatives free  for over 5 years now.   Right away, we noticed a huge shift in our social life, but it took time to figure out why.  For a long time I thought that it was because Dominic’s blatent regression from neurotypical to disabled made people – particularly parents of kids his age who he’d played with for years – very uncomfortable.  That they didn’t know what to say or how to interact any more both with Dominic and with us.  Potentially some guilt that our kid was injured and theirs was fine, and no idea how to handle that.   We, as parents, have become extremely intense – we say things about vaccines, trusting doc’s, trusting the FDA, etc – that aren’t comfortable for a lot of people and I’m sure that makes us less fun to be around too.  

I think it was a little over a year ago when Rod, in conversation with some of his long time guy friends, heard then phrase “we don’t invite you guys to parties anymore because we don’t know what to feed Dominic”.  He was floored. I was floored when he told me the conversation – Really?  It had been about not knowing what to feed Dominic???  Not about discomfort around us?   How do you respond to that?  We always consider if there will be Dominic safe alternatives and ensure that he’s got something safe to eat. Its kind of our job.  It was actually very hurtful to realize that people we’d been emotionally connected to for many years basically severed that connection without talking to us at all because they were uncertain about what food to serve.  (yes, I am fully aware that there’s a good chance that statement was an excuse for any of the above possiblities I originally thought it was about)

To say we are tremendously grateful for the 1 set of friends who not only continues to invite us to social stuff, but also every time manages to have completely safe food for Dominic is an understatement (you know who you are).  We definitely feel isolated, especially in the age of facebook when we see comments by mutual friends about things we aren’t invited to.  Even tho Dominic is leaps and bounds better and we could probably actually relax at someones home  with him now,  the opportunities just don’t present themselves very often.

So I would say to you reading this…  if you are not sure what to feed a child (or person in general) who has recently gone on a special diet… just ask. Really.  Because it will mean the world to the parents to remain socially connected to you.  They are going through enough other garbage right now about their kids regression, they really need the support system and the opportunity to just think about something else for awhile.

What I forgot to tell you about yesterday...

I was rushed writing the blog post yesterday and forgot to tell you a couple of  the moments of the day


The walk is along a creek in Colorado Springs.  Very well established, clean, nice trail through downtown.  The entire way, Dominic kept asking us where the whale was.   Because, there was water, so therefore there HAD to be a whale.

____

I wore my Thinking Moms Revolution shirt and managed this self portrait at the halfway point of the walk.  I'm all red from the sun/exertion, my eyes are puffy from allergies (and fortunately the cottonwoods weren't blooming yet or those would've been MUCH worse)  and have no idea why i wasn't smiling.   But I was the only one w/a TMR shirt. I got lots of compliments on it being the coolest shirt there.  It was!

Here're Rod, Dominic, and Shanti at that same turn around point.

~~~~~

Dominic spent the remainder of the day so calm that in passing I suggested to Rod we take him on a 5K walk every morning.   Thats not going to happen because there just aren't enough hours before work/school, but it does really make me look forward to all the physical activity he will get this summer at the Y camp.

Alpine Walk!

We took Dominic and Shanti downtown this morning for our 4th annual Alpine Autism Center 5k walk.  Beautiful weather for it this year, and Dominic did SO well.

For the first time, he did the kids fun run  with no adult supervision/assistance - he stayed on course and finished mid pack.  He had to keep pulling up his pants tho, apparently he got taller/skinnier overnight.

Multiple people commented "Oh, he looked at me" and "He's so calm".  He followed direction really well.  And no meltdowns. it was SO nice.

The dog did great too.  Dominic had a ball keeping charge of the leash.   At one point he and the dog were running ahead of us, up and down the rocked wall to the side of the trail.  The dog wasn't THAT amused about it.  But Dominic was!

This week....

So how is Dominic doing this week?

 

Pretty good.  We are seeing some more signs of brain connections refiring this week.  More sensory seeking behaviors to cope with those neurological changes.    Definitely more SIB’s in the form of hitting his own hands / biting his forearms.  Our chiro likened what she felt doing on energetically in his brain yesterday to “sparking”, which matches my gut instinct for whats happening.

 

So we – hopefully -  in the worse before it gets better time as far as stimming,  it feels like, BUT we are also seeing better focus (during homework time, for example – he sat and did homework with Rod yesterday for probably 30minutes). Seeing some better verbals, tho he’s gotten so used to us knowing what he wants with 1 word requests that we’re going to just have to force him to use longer requests. We know he can do it.

 

We’re seeing happy laughter at appropriate funny things – distinctly different than his out of control yeastie laughter that he had for so long.

 

 

Whats coming up?

 

Presuming that the weather cooperates (we’re having a winter snowstorm today), we are planning on the whole family (down to the dog) going to walk the Alpine Autism Center’s annual 5K on Saturday morning. It will be our 4^th year to walk.

 

If you have not sponsored me, but would like to… please do. It’s a good cause, Alpine does good stuff.

thats no suprise...

Hey Look, a Drug that treats protozoa and helminths (both types of parasites that the protocol we've had Dominic on since July addresses)  has successfully reversed symptoms of autism in mice and is moving to human study.

Imagine That

Dominic's experience making a difference

On Friday, Dominic and I went on a quick trip up the Pass to see a friend of mine who, with her little ones and husband, was visiting. Its about a 45minute drive, and so pretty.   Dominic had a fantastic time playing with the 2 large dogs who are part of their family while I visited with my friend.  He also managed to NOT have a complete meltdown when I wouldn’t let him go play in the creek that crosses their property (this is huge. He LOVES water)

I’ve known this woman since college, and she has been one of my “family of heart” for many years.   

I remember before Dominic regressed, talking to her about vaccines.  How we were waiting until he was 2 and then doing 1 shot at a time because I didn’t want to overwhelm a tiny baby with so many known neurotoxins.  I remember her kind of cocking her head with the “really, Joy” look, until our teacher looked at her and said “she’s not kidding”.   I wasn’t anti-vax at that point, I was just anti-vax schedule.  It seemed stupid to throw so many challenges at such a newly developing immune system.   

When Dominic regressed and we found ourselves at the start of the therapy and treatment marathon (which we are still running), she was one of our angels.   We talked about it again in depth shortly before she got engaged to her now husband – did I really think the shots were the culprit?  And at that point I knew they were part of the bigger picture, along with family history of autoimmune, years of toxins in our bodies, and chemicals all around.   And she listened.

I got to snuggle her 3 month old on Friday and play with her toddler.  Both of whom are unvaccinated and will remain that way.   She’s a Thinking Mom now, too.

Crazyness

So my post Friday morning generated a pretty good discussion on facebook.  I want to share some of that here.

First, its tremendously important to me to make sure that I remember Dominic preregression, and that gets harder and harder the further away we get.  So I am so blessed when the people who were around in our lives then post their memories of that time too  (the ones who’ve stayed, who haven’t been so freaked out by his regression that they aren’t around anymore – but that’s another topic for another day).  And there were a good number of those posted yesterday.  Here’s my favorite, because it reminds me that I’m not crazy. I didn’t “miss” a developmental delay, I wasn’t in Denial.   It really was a huge, almost overnight, shift.  And that’s hard to communicate to new people / teachers / therapists in our lives 5 years later.

I remember too well. Every time I wind yarn, I have to choke tears. I will never forget Dom at my kitchen counter in lock step with . Going across the street to the playground just in time in the evenings to watch the sky turn pink while they had races on the slide. was afraid of the big slide so she always tried to convince him to go on the smaller tandem slide, but he had none of that and made her do the big one. Being fascinated with that stupid shoelace, so I pulled out the swift and ball winder for him to wind yarn over and over while he questioned me about it. He was a crazy dolphin in the water, and I was a little jealous of his fearlessness compared to my meek (at the time) little girl when we played.

And I remember seeing you at Costco about a month later. We had talked on the phone and I thought someone (the teacher, you???) had a screw loose. That kid was fine! He had no trouble looking me in the eye. He asked great questions, made great observations, and we had conversations at length. He played with my kid. Normal for a goofy three year-old. What do you mean "He's not making eye contact?!?" Someone had to be confused. Then I saw him in the baby seat of the shopping cart that day. He buried into your armpit and moaned. He was afraid of me (or that's what I interpreted in the moment). He had no words. And you shrugged at me and said, "See?" One of the scariest moments of my life, and I won't ever forget

That’s the story that needs to be remembered. He was FINE.  And then, He wasn’t.

But then, a most interesting thing happened… these things were posted…

(childs name) regressed at age 5, my second child, but the last of my 3 on the spectrum to go, preceded by child # 3, and child #4. My friend’ daughter was in middle school. (name)’s son was 7 1/2. You will get him back. I will get all 3 of mine back. and every day will be an FUA day!!

And

“Just because a child narrowly made it through, doesn't mean it's automatically all sunshine and roses later. There is always a chance that the straw will eventually break the camel's back. Elizabeth Wray, who is still locked up at BCH, regressed at, I wanna say almost 16...February last year, developing PANDAS 6 months following a DTaP. The hospital subsequently had CPS remove the parents' rights, took her off antibiotics and GFCF diet, even though she had been on them under a doctor's care, and put on a slew of psych meds instead, where she still is today”

And

“The flu thing sounds just like my son. He was 11. He got really sick and then woke up a few mornings later with extreme OCD that was a living hell for 5 years. Thankfully he didn't regress into Autism, but, my gosh how can such things happen? Thankfully I never took him to a doctor, I just was too afraid of a horror story happening like the mentioned Elizabeth Wray.”

I know I’m not alone with a child who regressed later than infancy, but its really scary to know how late in a childs development that its happening.  5?  7?  11??  16?!?  Is any child really safe?  Is there ever a point where parents can exhale because their kid is definitely going to make it to adult hood with all cognition in place??

Where is the outstanding sense of urgency to find out why this is happening to healthy children???  Where is the media?  What is going on?????

5 years

In 2008, Dominic turned 3.  We then all got a horrible flu virus.  He picked it up from the Montessori preschool where we'd been so excited to get him enrolled right after his birthday.   He ran a fever for over a week.  And after the fog of the fever, within a week, his ability to string words together was gone.  It was like he was in a complete fog, no more eye contact, no more interaction.  I remember a friend of ours had been over right before we got sick for something and she ran out to her car.  He looked at me and said "Where Marci Go?".  That's the last sentence he said before he didn't anymore, and the last question he asked for years. 

I started this blog in April of 2008 because we were buried in documenting and trying to figure out what was going on and I needed a place to write it all down.  So many things have happened in those years and if you'd told me 6 years ago that this is where we'd be when he was in the second grade, i would've laughed at you -  special ed, over $100K out of pocket in therapy, the short bus, enemas, shots, enough pills and powders every day to choke a horse, keeping a poop spreadsheet (taking pictures of poop), a sleep spreadsheet, a verbal graph and a behaviors graph....

I cannot believe its been 5 years.  

5 years post regression
4 years, 3 months post diagnosis
4 years, 2 months, 3 weeks of him eating gluten, dairy, and soy free
3 1/2 years with a DAN doctor, 1 year on my own now
4 1/2 years of him taking supplements with every meal. I'm so glad he swallows pills now. 
3 1/2 years of ABA therapy - until we ran out of money
5 years of spending every lunch break I have at work scouring the internet for studies, answers, poop, stories, support...
5 different elementary schools before we landed in this one for kindegarten- we're in its jurisdiction, we're staying.
7 different IEP meetings
4 MD's, 2 nutritionists, 1 Chiropractor, and dozens of assorted therapists

5 years of fighting to get him back.

And in so many ways we've only just begun.

Why we can't get along.

The Autism parent's community is fractured. It has been for years, and its not getting any better.  The gist of the problem is that one side of the argument sees Autism is a brain disease / injury that needs to be healed/medicated and the other side of the argument sees Autism as a part of the core personality and that it shouldn't be treated at all for risk of damaging the intrinsicness of their child.

I had an interesting encounter on facebook last weekend around this.  Names have been changed below, and i did get permission from the participants in this conversation to use it as a springboard for a blog post.  I'm really happy that we kept the tone respectful all the way through.  If we could, as opposite sides, dialogue like this more often, i think we could maybe bridge the gap easier.

This was the meme posted that generated the conversation:

KM:  I HATE crap like this so much
Me:  Why? (seriously - love to have dialog on it. Because i am pretty sure we look at this from a different angle)
KM :  Well, the stats aren't even right, so it's fear mongering anyway. Regardless, there are many problems associated with Autism, Down Syndrome, as well as thousands of other disorders. This type of thinking promotes eugenics. I will never agree with wiping out an entire 'type' of people just because their lives have more challenges than others. Therapies to teach skills and social functions, yes. But not to change who they are at their core or eliminate them. The vast majority of this thinking comes from parents of autistic children, not autistic adults. Autistic adults do NOT agree (the very large majority of them).  I wouldn't change Dakota at all. Even when she was 100% non-verbal. Even now with her many many issues. We teach her things to help her as an adult, but I would not take away who she is.  The epilepsy portion is bunk too. It does not even remotely double the death rate. At all.  And even if all of that was true? It is still a gift.

Random Other person 1:  i think my autism is a gift.
Random Other person 2:  And yes...it's a gift. Every child, regardless of a disorder or illness is a gift...a child is not defined by autism.

ME:  I believe that this is a response to an article on Huff post the other day which featured parents talking about the rainbows and unicorns of Autism. I don't get fear mongering from it,  or promoting of eugenics. What i get, which is likely the perspective i have from our experience with Dominic is a frustration at the denial of comorbid physical illness. And yes, i agree the statistic is wrong. The one that the neurologist gave us so long ago as 1 in 4 boys w/asd will end up with a seizure disorder when they hit puberty and we needed to watch for that. I think Dominic is a gift, and I have forever, but I do not think that his descent at age 3 into regressive autism as the result of a viral brain injury is a gift (again, perspective)



KM:  And I get your view on that side of it too. Dakota was clearly born with Autism. Whereas Lily was not born how she is. I do not see her injury as a gift.

Me:  I happen to be very annoyed that there are so many different "things" for lack of a better term that lead to a dx of Autism. but that is neither here nor there. I would put Dominic's "autism" clearly in the camp of a brain injury, and in fact his original dx was acquired aphasia.

Random Other Person #1: what is the "already high death rate" of autism?

KM:  There isn't one. I don't know where they pulled that from either.

Me:  thats a weird phrase, what there is a a documented attraction to water for ASD kids and a higher number than general population end up drowning // there's documented wandering with the various chances of kidnapping/getting hit by a car / getting hurt. There're vaccine reactions, too, that lead to death. But... because the definition of autism is so broad, painting Kathryn's kid and mine with the same brush, just doesn't work.

KM:  Yeah. I mean, Dakota has a massive flight risk. She cannot be out in a public area without constant hand holding and we have door alarms to make sure she doesn't get out without us hearing her.
But if she got out and drowned, I do not consider that an Autism death rate.
Regardless though, there are many many parents of children with genetic autism that fully stick with the 'cure' and eliminating all autism. I think that is a very awful thing and I feel incorrect things like this further the misconception that leads them to feeling how they do.

I'm certainly not a totally rainbows and unicorns person, but I wouldn't change her. We will work through her various challenges one at a time just like with our other children. We don't think (right now) she'll live independently ever and that's ok.

Random Other Person #3 : My son with autism has said many times that he wishes there was a cure for autism. He says that having it makes every day a struggle. He sees Neuro typical kids and wishes he could be like them.
His father (who has Aspergers) also wishes he didn't have it and would love a cure.
Everyone is different. Some wish for a cure, some don't.
What I wonder is this: If a cure was finally found, do you think they would try forcing all people with ASD to take it (to save the gov't money on health care)?
Or, perhaps it would only be available at a very high price.
This is stuff that my son contemplates. Pretty deep for a 10 yr old.

BABS:  Okay so, I hate this graphic because all the stats are wrong and that's dumb. But I understand what it's saying. AND - 'm one of those people who would absolutely change it if I could.
I was diagnosed at 4 and it's not a gift. Autism makes me awkward, and upset, and anxious, and weird, and disliked and I don't enjoy it. I hate it. I hated it when I was little, and I hate it now. I'm not "living in Holland", and neither is my daughter, neither is the experience of struggling every day with her and listening to her talk about how she struggles.
If I could push a button right now to change it, I absolutely would. Taking away autism won't make her less "like her" - nor would taking away mine change my core. If I took away my spinal disease it also wouldn't affect my core. It's a disease, it doesn't have any positive parts.

I think if my, or my daughter's, autism were taken away we'd be more of ourselves. We'd still be smart, we'd still have our likes and dislikes, but we'd have much less stress and restrictions on our lives and thoughts. I'm all for that.

Me:   And see, these are two of the sides that are so conflicting - the ones who see autism as an illness/disease (genetic or regressive) that needs to be treated/cured and those who see it as an intrinsic part of someones being that should be celebrated not cured. I don't know if the sides are reconcileable and that is too bad. If we could agree to be respective of each other as community (not here, Kathryn and I are having the conversation actually really respectfully) then it would be much easier to do things like push for federal funding, push for insurance reform, etc etc.

KM: I think with me, I feel like if I took away any part of me, I would be a whole different person. I don't think I could eliminate my anxiety and neurosis without changing me. Meds to help me cope are fine. But I wouldn't change me.

BABS:    There's also the fact that so many people with autism suffer from depression, attempt suicide, have anxiety, ocd, and more. These are miserable experiences, and no one would want them... yet they are intricately linked to autism. My anxiety and OCD haven't made me a better person, and while the experiences have shaped me, I don't think it's made me *better*. I think it has limited me. I'd rather have a life less limited, if I could choose.
This is part of what shapes my view: ADHD is often linked with autism, and Tempest suffered very much from the symptoms. After years of alternative (read: useless) treatments, we finally went to medication. Within a month of taking it she went from not being able to read her own name, to reading at a 4th grade level and discovered that she LOVED reading. She hasn't stopped reading since, and it's allowed her to express who she is, learn a ton, and we can have all these wonderful conversations and experiences.
This is just one of many, many, MANY positives to taking the medication.

The meds cleared the ADHD fog from around her brain and allowed us to reach her, reach the autism, and actually start giving her therapies that worked so we could see improvement in her coping skills, communication and happiness.
If she doesn't take her meds, or misses them, she's miserable. Today she missed them and it's been a disaster. She's spent all day unable to do anything she loves, terrorizing her brother and sister... she may be smiling, but she's not happy because she has no control over her actions and can not spend longer than 2-3 minutes enjoying anything. SHE wants the meds because SHE doesn't enjoy being that way. When she does take them, and her major symptoms are controlled, we see more of who she really is. She's allowed to have likes, dislikes, and enjoyable experiences. She can make friends. She can be happy.
So if that's what happens when her ADHD is controlled or eliminated, why wouldn't it be the same for autism? She was born with both, both affect her, and both cause behaviors and experiences that she DOESN'T enjoy (nor does anyone else). 

KM:   But you don't think certain good traits associated with autism would disappear too? That's what I would be afraid of. Dakota would talk differently, etc.. if she weren't autistic.

BABS: 
I don't see autism as part of a core personality, I see it as a neurological disease. So I don't see any wholly positive parts, or "core" parts that would disappear. Being able to verbalize more clearly and precisely would be a huge positive for me. I would love to be able to actually speak what I mean 100% of the time instead of sounding like an idiot all the time. 
I also suffer with prosopagnosia, which is highly associated with high functioning autism, which makes me constantly forget people's faces. Even friends I've known for years. I cannot even begin to describe for you how embarrassing, humiliating, uncomfortable and horrible it is to forget my kids teachers because they're out of context (in a grocery store)... or not recognize a friend I've known for 8 years because she cut her hair and mistakenly ask her how her children are (when she has none).
Is that a part of me? Yes, unfortunately. Would it change me to have it gone? Yep. But that doesn't mean I wouldn't LOVE to see it gone. Forever. Today.

Autism is a Mountain Range.

I alluded to this analogy in the blog post last week where I reviewed The Thinking Mom's Revolution and I promised I would write more about it.

We live in Colorado Springs, so the analogy is fitting.  If you go to climb the hill in front of you, when you get to the top and take a breath, while you probably will see a downward slope, there's another hill even higher at the bottom of that slope.

So Autism is like that.  You work really hard, you try diets and therapies and treatments and you make progress.  And you think, "Oh, now we're moving". And you get excited.  And you realize you can take a breath because your child isn't strung quite so tight any more.  You don't have to keep an eye on him 1000% of the time at home anymore... you can actually be in the other room.    But then something happens and you're back to eagle eyed supervision.  And each step is really hard, and you have to try something else.  You're on the next mountain.

Its tremendously important to have a way to cross the mountain range where its narrow.  So many of us end up turned the wrong way, and fight our way up and down mountains not realizing we're not crossing the range, we're going up and down it. 

The good news is... There is a way across!     We know people who've done it.    And we know how they got there.  We have the Trail which bisects the range, a compass and we've learned to read the colored strings left along the way marking the Trail.    'Course, we wasted a lot of time investigating colored strings that led us nowhere. And got lost several times on our way to find the actual trail...

School Meeting went well

We had our meeting to discuss Dominic's transition to third grade / "intermediate" SPED next year yesterday afternoon and it went pretty well.

Present were the primary SPED, intermediate SPED, their supervisor from the district, the building principal, the social worker and us.  It was kind of funny, the principal started out the meeting introducing us as "extremely involved" parents.  I don't know that I feel THAT involved in the school, but I certainly feel involved in the process.

We had a really good discussion. It was clear that the social worker and the SPED Supervisor knew exactly what I (and the primary SPED) were talking about when we described how Dominic responds far better to reinforcement / redirection even though it flies in the face of the instinctual reaction to yell "No".   The Principal and the intermediate SPED, tho, weren't as familiar with disciplining via redirection.

The reality is that until August, the school does not know how many SPED teachers OR how many Para's they will have to work with, and those numbers are all based on a mathematical formula based upon number of students enrolled.  Which they just don't know until the year begins. Odds are they will begin the year staffed as they have ended this year, but do know that our current SPED will be at a different school.  Presuming that all things stay the same, Dominic will have primarily his current Para again next year.  We all agreed it would be good to deepen the pool of people capable of working with Dominic so that probably means mixing up the paras involved.

I made clear that if the current Para (who has the least seniority in the building so would be the one to go if enrollment drops per district policy) does not come back, I would push for whoever ends up with Dominic the majority of the time to go to the district Autism lab for training.  That lab requires the para and child to commute to a different school half days for 6 weeks for the training.  It would be difficult for the school to do but i think that we could get that done. The SPED supervisor didn't veto it which apparently was a good sign.

We talked about appropriate reinforcers and I let them know that their wonderful climbing wall in the gym would probably be the big gun reinforcer if he could use it.  (apparently they don't break it out very often due to liability issues, but i offered to sign whatever waiver was needed to allow him to use it regularly) .  We also talked about the logistics of how Dominic works - he does his work on his IEP goals in the classroom with his third grade peers who are working on other stuff.  He takes regular sensory breaks, both structured and free time (those'll continue).  It was clear that the ABA style of teaching that Dominic is receiving (eg - do a task for 6-8min, complete the task, get 3-5min free / unstructured time) is outside the comfort zone of the intermediate SPED.  As such both the principal and the SPED supervisor are in agreement that she (the intermediate sped) will spend some time working with Dominic over the next few weeks in order to get a feel for how he does best.  They are even going to bring in a sub to help with the workload for this time. Which is really cool.

So, i'm optimistic. I feel like we've got a good support team in place and I also feel like every person there knows that we will be keeping a very close eye on them next year.

Oh, and I had the chance to tell the story of Dominic's Regression. And to tell them all that the latest CDC numbers are 1 in 50.  The principal was gobsmacked and said "its got to be environmental, in our food or something". Yep. Sure does.

Belated Photos - Elephants

Dominic has always loved the elephants at the zoo.  much to his chagrin, they've been unavailable for over a year because the zoo was upgrading the exhibit.  Well, on Friday, we got to see them again!   The new exhibit is really cool and interactive and he had a blast. There's also a new African lion who Dominic immediately told us was Simba.

Here're a couple of pictures from the new exhibit from our visit over Spring Break.  Fun times.  Also, mental note, Spring break is a horrible time to go to the zoo. The place was busier than I've ever seen it.

Special Ed, the old guard vs. the new.

Autism and Behavior therapy to manage it are relatively new phenomenon in the educational system. Like... the last 15 years, with them being more prevalent the last 5.   Lots of the special ed teachers and para's (at least in our school system) predate the concept of using ABA as an educational tool.  Their training for special ed was with kids who have CP or Downs or MR, not with kids who self injure, are aggressive, are tremendous sensory seekers, or who require tremendous postive reinforcement/redirection to function.

Dominic's current SPED teacher (and the one before her who retired at Halloween) is trained and certified in using ABA, specifically to administer the ABBLS curriculum.  He is currently the only child on the ABBLS at his elementary school.  The preschool autism coordinator so many years ago started it, and the district has had to keep going.  Which is not a bad thing.  The ABBLS curriculum requires a para who is trained in using it (there's an autism lab in the District, and they teach the para's how to use it) and basically requires 100% one on one.   Dominic does great with this kind of structure.  This particular special ed teacher will not be back to our elementary school in the fall.  Technically, Dominic could transition to the secondary SPED teacher since he'll be in the third grade, but she's not trained in the ABBLS.  So we are hoping that whoever they hire to replace our current primary SPED will be.

At any rate, the para that he is with most of the time (except for her lunch breaks, for all intents and purposes) is fantastic. I liken her to a cross between a grandma and a drill sergeant.  We adore her.  We have no idea if she'll be around next year or not, but we hope...

So remember when I told you all about the chicken before spring break?  I didn't tell you the whole conversation because I was still mulling it.

Apparently Dominic was in the special ed room under the eye of "old school" para's who don't normally work with him while his para was on her lunch break.  They were halfway watching him, and he decided that he was going to be in charge, and he was going to open and close the microwave door repeatedly, while laughing at them.  They did the "old guard" response of both yelling "NO, STOP,. BAD" kinds of things and he just laughed and kept going.  Our SPED teacher came in and apparently came unglued at them for handling him inappropriately.  The proper way to manage Dominic's negative behavior would've been to provide a redirect to a more appropriate activity.  (And in fact, redirection is in his IEP).  Instead, they were reinforcing his negative behaviors by paying huge amounts of attention to them.

After a long phone call with me, in which I requested a conference with her, the principle, her supervisor, and the secondary special ed teacher to discuss continuity next year, and appropriate training for all people working with Dominic, his special ed teacher discussed the problem with the principal and has gotten a 2 hour training for all SPED staff (including paras) by the district Autism guru in April.  We are still having the meeting. I made the point that if D11 cannot provide an appropriate learning environment for him (structure, redirection, etc), then perhaps we needed to talk about the district paying for someone who can provide that environment.  So we'll see.  A lot hinges on the training level of whoever they bring in to be the second sped teacher at his elementary school, and if we can keep him there instead of moving him to a different teacher who doesn't have the training required.

The meeting is scheduled for tomorrow.  It should be very interesting.