Many people with Fragile X have GERD, or Acid Reflux Disease. Punkin is one of these people. He now takes two medications to help manage it -- one in the morning and one at night. Anyway, three weeks ago Punkin and I joined my mom and her friend for their weekly Mexican food and drink relaxation time. Punkin and I arrived much earlier than the others and he had already consumed a fair amount of salsa. By the time they arrived, but before they could actually sit down, I was catching vomit in my hands and depositing it into an empty chip basket. So no more salsa for Punkin.
The next week, maybe Wednesday, I called my mom around 5:00pm. "Can you please come get him on your way home? Please?" She walked in to find vomit covering my couch and television. Like I've said before, It's a puzzle to me why I don't have more visitors.
And then there's this past Thursday night, again after Mexican food, but this time he just ate chicken and cheese, he yelled, "OH NO!" after I put him to bed. Sure enough, he spent the next 10 minutes in the shower and I spent the next 20 trying not to swear.
I felt, though, like I handled all three of those situations pretty well. I cleaned them up rather quickly and aside from the television incident, which was out of my control, I kept it contained. Until Friday.
I was that person. We were that family. Punkin had already eaten a big snack at home. I should have known better, but I was distracted and just let him order those stupid corn dogs at the restaurant --the intimate, quiet, downtown restaurant. We were nearing the end of the meal, were probably going to pay soon, and then it just came. It just came like a fountain. A beige barf fountain.
And I froze. I wanted to get him up and away from the table, but more just kept coming. People nearby were switching tables, staring in horror, the waitress was dumbfounded. No one knew how to proceed except that they wanted to move away. I just kept thinking, "And now if I move him, he'll drip puke everywhere. Like a little trail to the reflux kid." In hindsight, I should have scooped him up and carried him outside, because carrying him to the bathroom would be rather useless --he's about 50% on hitting the toilet on a good day. But I just kept catching and dumping. When is it that moving towards vomit becomes your instinct?
Oma and her friend, who happened to be the one who witnessed a similar scene at the Mexican restaurant three weeks ago, started cleaning up while her husband grabbed a disposable blanket and stood in the rain with me outside to hose Punkin off before carrying him to the car. Seriously, a hose, in the rain, outside of a restaurant. It's okay to laugh.
I've never been so happy to leave a place.
We are working on portion control. I really don't know what else to do.
Sunday, May 27, 2012
Friday, May 25, 2012
we did it, guys!
I was so proud of him at his graduation. He stood on the risers for all of his songs, and he even participated in a few of them. For the others, he just stood with his hands behind his back.
When it was time to receive his diploma, he stood in line, waited, and then went and sat down. GO PUNKIN!
Thank you so much to all of the wonderful people who help him every day.
Monday, May 21, 2012
iPad apps we love
It seems like nearly every day I see a post on Facebook or a forum somewhere asking about iPad apps. Well, I am no expert, but I thought it high time to share the ones we've found and kept. Please add your favorites in the comments. I highlighted Punkin's MOST favorite ones in red.
Reading and Language:
Starfall ABCs: An interactive alphabet "flashcard" set with fun games and graphics. ($3.99 and worth it.)
Piikea Interactive Alphabet ABC Flash Cards: Each letter comes alive with each tap. So cute. ($2.99)
Tap to Talk: Very simple communication board. (FREE)
Sight Words: Flash Cards, will speak words for you, can choose various sets.
Ocean House Media Books: Read aloud, tap words, or read to yourself options. And the pictures come alive with a tap of the finger. (About $5 each.)
Build A Story: Drag and drop items into scenes to create a book. Can email and print. ($3.99)
Talking SCar: Race the car, talk and it repeats you. (FREE)
Handwriting:
ABC Free: Trace Letters (FREE)
Easy Writer: Trace Letters (FREE)
Math:
Wooden Puzzle: Easy shape puzzles (FREE)
Learning Puzzles: Harder interlocking puzzles, choose the number of pieces (FREE)
Farm Flip Memory (FREE)
Preschool Memory Match (FREE)
Toy Story Memory (FREE)
Starfall Gingerbread Man: Choose shapes for eyes, nose, etc and colors for each. (99 cents)
Balloon Pop: Counts as you pop balloons. Simple but great for one-to-one correspondence. (FREE)
Clean Up: Sort items into two or three categories. (FREE)
Photo Concepts: Works on positional words. (FREE)
PreNumber Sort: Looks like a pocket chart-- sort by shape. (FREE)
Fine Motor/Fun/Promote Language
Clicky Sticky: Choose from six scenes and decorate each -- dinos, people, underwater, planes. ($2.99)
Clicky Cars: Build race cars and race them! (99 cents)
Doodle Buddy: Draw, stamp, or import your own pictures to draw on. (FREE)
Draw Free: Basic drawing app. (FREE)
Cookie Doodle: Drag, drop, and mix ingredients, then bake and decorate cookies. (99 cents)
Cake Doodle: same as above but with cake (99 cents)
Build A Train: Choose cars and then watch it drive on the track. (FREE)
Felt Board: Build people, scenes, and even email and print them. ($1.99)
Social Emotional/Other
Going Places: Premade video models about going out to eat, getting a haircut, etc (FREE)
Following Directions: Flashcards to follow fun directions with tracking software. (about $5)
Toddler Jukebox: Kids can choose and play their own classic songs like "Wheels on the Bus." (99 cents?)
Save Your Sanity
PBS Kids Player (FREE)
Reading and Language:
Starfall ABCs: An interactive alphabet "flashcard" set with fun games and graphics. ($3.99 and worth it.)
Piikea Interactive Alphabet ABC Flash Cards: Each letter comes alive with each tap. So cute. ($2.99)
Tap to Talk: Very simple communication board. (FREE)
Sight Words: Flash Cards, will speak words for you, can choose various sets.
Ocean House Media Books: Read aloud, tap words, or read to yourself options. And the pictures come alive with a tap of the finger. (About $5 each.)
Build A Story: Drag and drop items into scenes to create a book. Can email and print. ($3.99)
Talking SCar: Race the car, talk and it repeats you. (FREE)
Handwriting:
ABC Free: Trace Letters (FREE)
Easy Writer: Trace Letters (FREE)
Math:
Wooden Puzzle: Easy shape puzzles (FREE)
Learning Puzzles: Harder interlocking puzzles, choose the number of pieces (FREE)
Farm Flip Memory (FREE)
Preschool Memory Match (FREE)
Toy Story Memory (FREE)
Starfall Gingerbread Man: Choose shapes for eyes, nose, etc and colors for each. (99 cents)
Balloon Pop: Counts as you pop balloons. Simple but great for one-to-one correspondence. (FREE)
Clean Up: Sort items into two or three categories. (FREE)
Photo Concepts: Works on positional words. (FREE)
PreNumber Sort: Looks like a pocket chart-- sort by shape. (FREE)
Fine Motor/Fun/Promote Language
Clicky Sticky: Choose from six scenes and decorate each -- dinos, people, underwater, planes. ($2.99)
Clicky Cars: Build race cars and race them! (99 cents)
Doodle Buddy: Draw, stamp, or import your own pictures to draw on. (FREE)
Draw Free: Basic drawing app. (FREE)
Cookie Doodle: Drag, drop, and mix ingredients, then bake and decorate cookies. (99 cents)
Cake Doodle: same as above but with cake (99 cents)
Build A Train: Choose cars and then watch it drive on the track. (FREE)
Felt Board: Build people, scenes, and even email and print them. ($1.99)
Social Emotional/Other
Going Places: Premade video models about going out to eat, getting a haircut, etc (FREE)
Following Directions: Flashcards to follow fun directions with tracking software. (about $5)
Toddler Jukebox: Kids can choose and play their own classic songs like "Wheels on the Bus." (99 cents?)
Save Your Sanity
PBS Kids Player (FREE)
Wednesday, May 16, 2012
must capitalize on this
So let me tell you about my awesome morning. And by awesome I mean painful, messy, and destructive. But first let me tell you that Punkin is preoccupied with five things: 1) the toaster oven 2) the microwave
3) the dishwasher 4) riding the bus and 5) taking out the garbage.
So Sunday night Punkin did not sleep well. He woke up at 2am, I turned on a movie in his room (never did I think my seven year old would have his own television, and yet here we are), and at 3am I heard, "MOM!" I probably heard it several times before then, but I don't remember what happened those times; I'm pretty sure I just put his covers back on him and said "sleep." At three I turned off the television and firmly told him, "I'm done. You have to go to sleep." He wined, but complied.
On Monday he had a field trip to a park, so by the time we came home from school he was exhausted and starved. He ate and asked to go to bed. Fine. Now comes Tuesday morning.
It's 5:00 in the morning and I'm heating up homemade chicken strips and leftover hamburgers for Punkin's breakfast. He's dressed and ready to go as quickly as possible and of course thinks that once his shoes are on that it's time to go sit and wait for the bus. Uh, no.
He asks me every ten minutes, "I go a bus?"
"Not yet, honey."
"NO BUS YET!" And he drops dramatically onto the couch/floor/bed.
By 6:30, when it IS time to go wait for the bus, he is standing on his last leg of patience. But first he has to eat the dreaded applesauce with medicine. We ran out of pink applesauce and now we're on boring organic cinnamon.
Allow me to summarize. He slapped me across the face, knocked our coffee table on its side, threw his shoe at the wall, and hit my hand so hard it splattered applesauce all over my shirt.
So now we are out a day of meds and he's even more upset because he's in time out.
I make new meds and sit down with him, "You can't go to the bus until you take you medicine (this usually works brilliantly)." He threw a Hot Wheel at me, hitting the glass dish of applesauce and shattering it. He stops, frozen, while I look through the remaining chunk in my hand for glass pieces to see if it's safe to give him.
"Fine, let's go outside."
"I take the garbage?!" He asks in a chipper voice.
"No. You didn't take your medicine."
He picks up the smaller bag, "I take this one."
"No, you didn't take your medicine."
"MY GARBAGE OUT!!!"
"If you want to take out the garbage, you have to take your medicine."
"Okay," He opens his mouth.
"Really, Punkin? Really? The garbage?"
In a Cookie Monster voice, "GARBAGE!"
3) the dishwasher 4) riding the bus and 5) taking out the garbage.
So Sunday night Punkin did not sleep well. He woke up at 2am, I turned on a movie in his room (never did I think my seven year old would have his own television, and yet here we are), and at 3am I heard, "MOM!" I probably heard it several times before then, but I don't remember what happened those times; I'm pretty sure I just put his covers back on him and said "sleep." At three I turned off the television and firmly told him, "I'm done. You have to go to sleep." He wined, but complied.
On Monday he had a field trip to a park, so by the time we came home from school he was exhausted and starved. He ate and asked to go to bed. Fine. Now comes Tuesday morning.
It's 5:00 in the morning and I'm heating up homemade chicken strips and leftover hamburgers for Punkin's breakfast. He's dressed and ready to go as quickly as possible and of course thinks that once his shoes are on that it's time to go sit and wait for the bus. Uh, no.
He asks me every ten minutes, "I go a bus?"
"Not yet, honey."
"NO BUS YET!" And he drops dramatically onto the couch/floor/bed.
By 6:30, when it IS time to go wait for the bus, he is standing on his last leg of patience. But first he has to eat the dreaded applesauce with medicine. We ran out of pink applesauce and now we're on boring organic cinnamon.
Allow me to summarize. He slapped me across the face, knocked our coffee table on its side, threw his shoe at the wall, and hit my hand so hard it splattered applesauce all over my shirt.
So now we are out a day of meds and he's even more upset because he's in time out.
I make new meds and sit down with him, "You can't go to the bus until you take you medicine (this usually works brilliantly)." He threw a Hot Wheel at me, hitting the glass dish of applesauce and shattering it. He stops, frozen, while I look through the remaining chunk in my hand for glass pieces to see if it's safe to give him.
"Fine, let's go outside."
"I take the garbage?!" He asks in a chipper voice.
"No. You didn't take your medicine."
He picks up the smaller bag, "I take this one."
"No, you didn't take your medicine."
"MY GARBAGE OUT!!!"
"If you want to take out the garbage, you have to take your medicine."
"Okay," He opens his mouth.
"Really, Punkin? Really? The garbage?"
In a Cookie Monster voice, "GARBAGE!"
Sunday, May 13, 2012
food talk
This list is why I
haven't been blogging; I've been stuck at the store reading labels. And
to make matters worse, I've been eating a salad dressing with balsamic
vinegar for a week now and just realized it tonight! Oh, and the
tortillas did not taste very good, but I imagine it was the lack of
salt.
This
problem, for me, is much more than a headache, and I realized it after I
ate (accidentally) a heavy dose of MSG at a restaurant. By the time I
got home, I could feel the pain moving down my arms, into my hands, and
down through each one of my fingers. And then I just felt tired and
awful all over. I forgot that I used to feel lethargic all the time. I'm
still dealing with that pain today, mostly in my hands, because some
foods that normally would have caused a brief headache have aggravated
the MSG reaction.
So
no bacon, ham, or lunch meat. And no tomatoes for the time being. And
no white flour (niacin), only 100 percent whole wheat. And none of the
items below, because I am a highly sensitive person.
I'm
not saying you shouldn't eat these foods -- by all means, enjoy! I
don't judge; I'm just trying to explain because I've been getting lots
of questions. And yes, I am feeling better when I am eating right. It's
remarkable, actually.
Names of ingredients that contain MSG
by MSG aliases exposed on Sunday, February 20, 2011 at 1:21pm ·
This post contains a list of common ingredients that contain processed (manufactured) free glutamic acid (MSG). Glutamic acid found in unadulterated protein does not cause adverse reactions. To
cause adverse reactions, the glutamic acid must have been processed/
manufactured or come from protein that has been fermented.
There are more than 40 different ingredients that contain the chemical (processed {manufactured} free glutamic acid) that causes adverse reactions. The following list has been compiled over the last 20 years from consumers’ reports of adverse reactions and information provided by manufacturers and food technologists. The numbers refer to E- numbers, used in Europe in place of food additive names.
You can DOWNLOAD THE LIST from our web page (www.truthinlabeling.org/hiddensources_printable.pdf).
________________________
Names of ingredients that always contain processed free glutamic acid.
Glutamic acid (E 620), Glutamate (E 620)
Monosodium glutamate (E 621)
Monopotassium glutamate (E 622)
Calcium glutamate (E 623)
Monoammonium glutamate (E 624)
Magnesium glutamate (E 625)
Natrium glutamate
Yeast extract
anything “hydrolyzed”
any “hydrolyzed protein”
Calcium caseinate, Sodium caseinate
Yeast food, Yeast nutrient
Autolyzed yeast
Gelatin
Textured protein
Soy protein, soy protein concentrate
Soy protein isolate
Whey protein, whey protein concentrate
Whey protein isolate
anything “…protein”
Worcestershire sauce
Ajinomoto, Vetsin
Balsamic vinegar
Names of ingredients that often contain or produce processed free glutamic acid:
Carrageenan (E 407)
Bouillon and broth, Stock
Vinegar
any “flavors” or “flavoring”
Maltodextrin
Citric acid, Citrate (E 330)
anything “ultra-pasteurized”
Barley malt
Pectin (E 440)
Protease
anything “enzyme modified”
anything containing “enzymes”
Malt extract
Soy sauce
Soy sauce extract
anything “protein fortified”
anything “fermented”
Seasonings
The following are ingredients suspected of containing or creating sufficient processed free glutamic acid to serve as MSG-reaction triggers in HIGHLY SENSITIVE people:
Corn starch
Corn syrup
Modified food starch
Lipolyzed butter fat
Dextrose
Rice syrup
Brown rice syrup
Milk powder
Reduced fat milk (skim; 1%; 2%)
most things low fat or no fat
anything Enriched
anything Vitamin enriched
The following work synergistically with MSG to enhance flavor. If they are present for flavoring, so is MSG.
Disodium 5’-guanylate (E 627) Disodium 5’-inosinate (E-631) Disodium 5'-ribonucleotides (E 635)
___________________
You can DOWNLOAD this LIST from our web page (www.truthinlabeling.org/hiddensources_printable.pdf).
There are more than 40 different ingredients that contain the chemical (processed {manufactured} free glutamic acid) that causes adverse reactions. The following list has been compiled over the last 20 years from consumers’ reports of adverse reactions and information provided by manufacturers and food technologists. The numbers refer to E- numbers, used in Europe in place of food additive names.
You can DOWNLOAD THE LIST from our web page (www.truthinlabeling.org/hiddensources_printable.pdf).
________________________
Names of ingredients that always contain processed free glutamic acid.
Glutamic acid (E 620), Glutamate (E 620)
Monosodium glutamate (E 621)
Monopotassium glutamate (E 622)
Calcium glutamate (E 623)
Monoammonium glutamate (E 624)
Magnesium glutamate (E 625)
Natrium glutamate
Yeast extract
anything “hydrolyzed”
any “hydrolyzed protein”
Calcium caseinate, Sodium caseinate
Yeast food, Yeast nutrient
Autolyzed yeast
Gelatin
Textured protein
Soy protein, soy protein concentrate
Soy protein isolate
Whey protein, whey protein concentrate
Whey protein isolate
anything “…protein”
Worcestershire sauce
Ajinomoto, Vetsin
Balsamic vinegar
Names of ingredients that often contain or produce processed free glutamic acid:
Carrageenan (E 407)
Bouillon and broth, Stock
Vinegar
any “flavors” or “flavoring”
Maltodextrin
Citric acid, Citrate (E 330)
anything “ultra-pasteurized”
Barley malt
Pectin (E 440)
Protease
anything “enzyme modified”
anything containing “enzymes”
Malt extract
Soy sauce
Soy sauce extract
anything “protein fortified”
anything “fermented”
Seasonings
The following are ingredients suspected of containing or creating sufficient processed free glutamic acid to serve as MSG-reaction triggers in HIGHLY SENSITIVE people:
Corn starch
Corn syrup
Modified food starch
Lipolyzed butter fat
Dextrose
Rice syrup
Brown rice syrup
Milk powder
Reduced fat milk (skim; 1%; 2%)
most things low fat or no fat
anything Enriched
anything Vitamin enriched
The following work synergistically with MSG to enhance flavor. If they are present for flavoring, so is MSG.
Disodium 5’-guanylate (E 627) Disodium 5’-inosinate (E-631) Disodium 5'-ribonucleotides (E 635)
___________________
You can DOWNLOAD this LIST from our web page (www.truthinlabeling.org/hiddensources_printable.pdf).
Tuesday, May 8, 2012
learning curve
So this food thing. I am going to have to learn to cook, like really cook -- with individual ingredients and not opening boxes. Essentially all mainstream processed food is out, even regular things like flour and salt. Did you know that tuna in water is really tuna in water, vegetable broth, and something else? Bacon (!!!), ham, and lunch meat are out. Chocolate is probably out. Cheddar cheese from the farmer's market seemed okay today, so that was a plus. And I still haven't had a bad reaction to my favorite frozen pizza as long as I don't eat the pepperoni. So I'm looking at fruits, vegetables, and meat. Not unhealthy.
So I tried making tortillas tonight. It should have been so simple. I went to our local organic health food store and found an $8 bag of wheat flour (not even joking) and then brought it home and proceeded to watch it dust my entire 6x6 kitchen as I attempted to unglue my fingers from the dough (it was so, so sticky) and Punkin sprinkled it from the bag to the counter. It was like seeing tiny white pennies being tossed out the window.
The recipe should have yielded eight tortillas. I got maybe four, and I set off the smoke detector. So here they are, in all of their bad cell phone photo glory. And yes I am aware that they resemble pancakes.
The recipe is 2 cups flour, 1 cup water, 1/2 tsp salt, 3 tbsp oil. Kneed on floured surface. Break into 8 balls and roll each with a rolling pin. Cook in skillet with cooking spray or a little oil.
Also, I am over at
today. Check me out!
Friday, May 4, 2012
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