Sunday, December 16, 2012

53 days later, you get this

Punkin is one of those kids who, after learning a new phrase or skill, insists on practicing it over and over and over and over and over again. So when he told me his toe hurt last Wednesday, I didn't really think much of it because he's recently learned how to communicate that he is in pain.

It all started with an episode of Caillou -- and no, you don't need to tell me how much you hate that bratty little kid. I already know. Caillou is a good show for Punkin; it's calm, it addresses mundane life events such as buying new shoes and falling down and scraping your knee. After the shoe episode, Punkin thought he needed new shoes -- every time we went to the store. And after the knee-scraping show, he decided he needed Band-Aids on his knees, which he wore for approximately 22 seconds, about every 30 minutes.

We moved past the Band-Aids, for the most part, and moved on to simply expressing "I got hurt" or "My knee hurts." Luckily for him, this kind of talk earns him plenty of attention. So now every morning when he climbs on the bus, something different is injured. Again, when he told me that his toe hurt last Wednesday, I didn't really think much of it.

And then I looked at his toe. It was red. It was swollen. "Hmm. Maybe he bumped it." The next day he complained again, only this time the toe looked more purple. "Definitely must be bruised." And then Friday came. I picked him and his multicolored toenail up from school and called the doctor.

The nurse brought this into the room. Yep. There's sharp objects and gauze in that box. You guessed it -- an ingrown toenail. I'll let the pictures tell the rest of the story,
They have got to be kidding. They think they're going to do WHAT to my child's toe? HA!
Oh, and here's a giant tub of soapy water.

Both feet are in and he is still behaving. Maybe this will go better than I thought.
Or not. He might decide to take a bath with his clothes on in a tub that is, I'm sorry to say, a tad tiny.
After recovering from the fact that he got himself  wet, he contemplates his next move. Soak the feet again in the remaining water?
Oh, can't do that. This water is tainted  now. I'll have to dump it out. On the carpet.
And drink the rest. Definitely should drink the rest.
Maybe he was thinking that the soap would help with the infection he apparently has -- the one that made his toe turn purple and green. The one that has to clear up before the torture devices can come out. That one. And no, his pediatrician isn't touching that with a ten-foot pole. He's being referred to a podiatrist and possibly someone higher than a podiatrist depending on how poorly the podiatrist appointment goes. Jealous yet?





Wednesday, October 24, 2012

on a pumpkin search

I looking. I looking.

I found it!
Thanks, Oma!


are you ready for this?

I was going to try to come up with a clever way to tell this story, but I am exhausted and it hasn't come to me over the course of several days worth of attempts. So you get what you get and you don't throw a fit -- m'kay?

The thing is, I'm in love. And I felt very private about it, which is why I have been so absent this past month. You remember our doggy friend Annabelle? Well, it turns out that her owner has become first a friend and now the man with whom I envision my future. The complication is that he is nearly twice my age, I've known him for half my life, and he lives next door to my parents. It was slightly awkward in the beginning, but now I think we are beginning to adjust to this massive change in all of our lives.

I don't know if I feel like sharing much more than that right now, but I felt like the readers I have left deserved an answer. And yes, he makes me very, very happy. He is good to David, he treats me like a treasure, he calms me down when I am frazzled, and we make each other laugh. I feel as though I have found my partner in life and that feels pretty amazing.






Tuesday, October 9, 2012

Monday, September 24, 2012

catch up

Just wanted to share a few things to catch everyone up. First, my son has decided to take all meals in his bed. Well, not dinner, I guess -- just breakfast and bedtime snack. This morning he asked me to cover him up while he watched Disney Junior on his iPad and ate chicken.

Second, (and this is really just because everyone needs a laugh today), I was straightening my hair the other morning when Punkin walked in, said "I poop, sorry," and plopped two turds in the toilet.

Third, he finally got a bike. He's so excited to be like the other kids in the neighborhood.  Now for the big question -- how did I make him remember how to pedal from one minute to the next? Anyone? Ideas? Magic pills? You got nothing? Me too. But he sure looks cute trying!


Tuesday, September 11, 2012

my sweetheart

A friend asked me what my favorite time of day is, and the answer was surprisingly easy. By surprising, I mean it's one of those things I never thought I would say. My favorite time is the ten minutes right after Punkin wakes up in the morning -- the time when he wants to snuggle, play monster, and blow raspberries on my face. This picture was taken just before bed, which was a strong contender for "favorite," but there have been a few ... uh ... eruptions of anger at bedtime lately, knocking it down a few notches on the list. 

Monday, September 3, 2012

i kiss her?

"You need to take your medicine."
"I CAN'T WANT TO!"
"Do you want to see Annabelle?"
"Okay."

"You need to take a shower."
"I CAN'T WANT TO!"
"Do you want to see Annabelle?"
"I get the soap!"

This magical dog even talks to me. She says things like, "Punkin, you need to finish your food before you can go play" and "Punkin, I need my rest; it's time to go home." Works pretty slick. I may need a snowsuit this winter, though.

Saturday, September 1, 2012

oh, ya, the endoscopy

We pretty much all wanted to  bury our heads in our hands and click our heels together to get home. The really bad part was, only Punkin was allowed to scream and cry; the rest of us had to keep it together. So while the inner me had that crying face where you almost look constipated and definitely look on the edge of sheer terror, the outside me remained calm and only slightly disheveled.

Punkin woke up at 5:00am (the previous day he had woken up at 3:00am, so this was a remarkable improvement), ate a hot dog, tater tots, and watermelon around 6:00am, and then was exceptionally well-behaved until about 10:00am when he started to feel hungry. By the time we arrived at the hospital at 12:30, he was in tears. Oma carried all of our stuff and I carried Punkin up to the pediatric clinic, where they checked him in and took his vitals. Then they brought him back to the recovery area, put numbing cream on both hands and elbows (for his IV placement) and told us to come back in an hour. The nurse made this seem like it would be fun. HA! The kid hasn't been able to eat since 6am and won't get to anytime soon. He couldn't care less about you and your silly ideas.

I don't even remember the exact sequence of events after that. All I know is that at one point he was laughing and playing, another he marched up to the front desk and demanded a "note" (discharge papers) so that we could leave, and at another point I was restraining him to keep him from throwing whatever he could pick up at my face.

Then came the bargaining.

"I hungry."
"We can't eat yet. The doctor needs to take pictures of your stomach to help you to stop throwing up."
"No Doctor!"
"When we're all done, we can eat."
"Get a burger?"
"Yes."
"A McDonalds?"
"Anything."
"Whoo-hoo!"

Now repeat this conversation fifteen times. 

 After waiting the hour, he refused to drink the sedative they wanted to give him, so several nurses, Oma, and I held him down while the IV was inserted. They also called a Child Life Specialist, who brought *NEW* toys and even gave him his very own Lightning McQueen. After that, things became much funnier much more quickly -- for all of us. There's really nothing like seeing your kid "drunkenly" playing with Lightning McQueen. A little while later, they were able to fully sedate him and about 30 minutes after that it was done. The doctor said there are no glaring abnormalities, but did mention a loose connection between his stomach and esophagus, which makes it easier for food to come up.

As he was waking up from the sedation, he lifted his head and coyly asked, "Go McDonalds?"

We made it. We fed him and then I got him in his bed at home. Free and clear. The horrible day was over.

"MOM!?"

This was the most wretched vomit I had seen or smelled in a long time. I got him in the shower; he cried the entire time. I cleared the sheets, took his temperature (100.4) and settled him into my bed. As I looked at him, it hit me. I told you the doctor would help you. 

I called Oma, completely lost it on the phone, and then cried into her shoulder when she arrived to comfort me. I felt like I had tortured him all day for no reason. Turns out he is probably allergic to the sedative they gave him, the biopsies were all normal and he forgave me.

Thursday, August 23, 2012

updates

My birthday was awesome; it was a very fun entrance to my thirties. I felt very spoiled as I was fed a yummy lunch at work and showered with presents from friends and family. Keep in mind, though, when looking at this picture, that my birthday hat is at least a foot tall; I'm not that much taller than my sister.

Also, I took Mr. Punkin to see a pediatric gastroenterologist. He switched up his medication and asked me to call if the little guy kept vomiting. It helped for about a week and then he started throwing up again; I called them and now he is scheduled for an endoscopy. I'm just going to tell you this next part and let you decide how panicked I should be about August 28th. The procedure will take place at 3pm. We have to be there at 1pm. He is not allowed to eat anything after 7am and only allowed 4 ounces of water between 7am and 1pm. The good news is that I am allowed to give him his ADHD medication.

And yes, the bus has been showing up on time and on the correct street. 


Tuesday, August 14, 2012

dear bus company,

It would appear to me that you have a single mission, a clear purpose, a daunting yet noble task which only you can complete. You must, five days of each week, transport children to and from school in a safe and efficient manner. That is your job.

It would also seem to me, being as how school begins at a certain time each day and that students are not allowed (by law) to ride the bus for longer than one hour at a time, that you as a company would be extremely concerned with time.

Riddle me this, then, Batman. A member of your staff called me on Friday to ask if it was okay to pick up Punkin on the street that intersects with ours (A Street) rather than our street itself (B Street) due to heavy traffic on B Street. I agreed that this was indeed not only preferred by me, but in fact the approach that was taken last year. So, I was to expect a bus on A street at 6:54 Monday morning. Wonderful.

Monday morning came and went with no sign of the bus. I was late to work, Punkin was anxious, and we were both confused. I called that afternoon and was told that the bus was scheduled for 6:46am. That's a smidge earlier than 6:54, but okay.

Now it's Tuesday morning, this morning in fact, and Punkin and I are sitting on the couch, which happens to have a large window above it that faces B Street. He's just thrown his applesauce/medicine across the room because he "can't want it" when I catch a glimpse of something yellow outside. Sure enough, there's his bus, five minutes early and on the wrong street. Before I can even run outside to beg for an extra minute to find his shoes, the bus pulls away.

So we both know, Bus Company, that I called and spoke to someone and you returned for my sweetheart, without a harness I might add.  But fine, he's off to school and I can get ready for work. The problem is we were both so frazzled that I honest to goodness wept. I lost it.

I worry each and every day about the choices I make, about his future, about whether or not he has friends his age, about his physical health and emotional stability, that having to add "the bus" and our hectic goodbye to my list broke me. It done did me in. I only had about five minutes to spare for a pity party, though, so I put on my big girl panties and left for work.

So, uh, what time you planning on coming tomorrow morning? What street will you be on? Will you have a harness for my precious son who loves to wander? Whatcha think? You'll get right on that? Awesome.

Sincerely,

A Momma with a Bad Case of "The Irritated"


Thursday, August 9, 2012

don't ask me!


I found this picture of Punkin on my computer and it sparked the topic for my latest post over at www.prekandksharing.blogspot.com (linking isn't working on my iPad, sorry). Check it out!

Monday, August 6, 2012

teaching an old dog new tricks

Many people over the past two months, after hearing about my food "allergies" have, with good reason, looked at me with pity and asked, "Well, what can you eat?" Thankfully I have been spared any negative repercussions from eating cheese, but I cannot have bananas. If I go to a restaurant, there's not much -- a hamburger with no bun and a side of vegetables is usually safest. But if I make it myself, I can have almost anything; and I feel so much better for it. I've learned that enriched flour gives me a headache in the back of my head and neck. High fructose corn syrup, MSG, and high amounts of nitrates give me a headache on the top of my head along with blurred vision. And malted barley flour gives me a stabbing pain behind my left eye. But I can eat as much Haagen Dazs ice cream as I please, and I do. I've also learned to make a few things on my own.

I made my own Alfredo sauce and not only was it simple, it was tasty. I am quite content to live without sauce from a jar.

Chicken Noodle Soup (with homemade broth from a friend)

Whole Wheat Chocolate Chip Cookies. Amazing.
Oh, and there's also the Macaroni and Cheese, which was so delicious I never got a picture. I feel like such a good grown-up, which is fitting seeing as how I turn 30 in a few days.

(All of the recipes were from Better Homes and Garden. Email me if you want more information.)

Thursday, August 2, 2012

i can't want it!!

I want to write on my blog every day, I really do. But you see, every afternoon my sweet, agreeable seven-year-old morphs into a whining, crying, ball of a hot mess screeching "I CAN'T WANT IT!" when I suggest things like taking a shower or skipping thirds on snack. He's like one of those machines at the tennis courts that just shoots out balls, except his projectiles are Hot Wheels and household furniture. By the time I throw him into bed at night, I'm toast.

I started giving him a low dose of fast-acting Ritalin when I get home from work at 2:30, and it seems to help some, but now he's melting down right before bed. I'm thinking we need to start the brushing protocol again, or just continue to hang on for dear life until school starts and he hopefully returns to normal.

We also went to see the pediatric gastroenterologist, or as I like to say, the stomach doctor. He took Punkin off of one medication and doubled the other one. We've been puke free for a week! 


Tuesday, July 24, 2012

i'm back baby dolls!

 I saw New York, or more importantly I saw my dear friends who live in New York. During this time I sat on the beach and read a book. It was as glorious as it sounds.
I took a lot of pictures of flowers during a long drive home from a local farm.


 I saw a giant spade at the place where we bought the flowers; they also served homemade ice cream with fresh raspberries. I know you are all jealous.

I am learning how to cook, rather slowly, and sticking to my diet. I still have some pain, but I think it's from my neck being out of place. I still see the chiropractor, but the neck adjustments are much different now so as not to aggravate my (small) chiari malformation.


And perhaps the most exciting news of all -- I now have vinyl flooring in my bathroom! The first time Punkin peed on the floor, I was so excited to be able to clean it up with a paper towel and a Clorox wipe that I considered texting everyone I know.

Thursday, July 12, 2012

brooklyn

A pop-up pool in Brooklyn, complete with sand and some ultra-comfy lounge chairs.
A view of the skyline from Brooklyn.
This is just what I needed; a visit with some amazing friends to help me recharge. Oma and Opa deserve a special medal for babysitting these four days.

Sunday, July 8, 2012

ready? i throw it!

This is Annabelle, and unlike Gracie from our church that Punkin sits with in church every week, she is very active. I think between the two animals, Punkin is able to get the best of both worlds -- a dog to calm and comfort and a dog to play fetch and swim with almost any time he wants. I can see his self-confidence grow as he has become more and more comfortable with Annabelle, her owner, and the other children in my parents' neighborhood. She's also a nice incentive to convince him to take his medicine in the morning.


See my post on Super Hero Week at PreKandKSharing.

Thursday, July 5, 2012

don't mind the glisten, it's a natural glow

It's been rather warmish around here, so we've basically been swimming and swimming. This picture is from fireworks, when we nearly melted all together. Punkin did a great job and gave me an awesome gift -- he slept until 10am the next day. What a sweet boy.

I have to say that I am loving seven years old. He's helping me cook dinner, he wants to load and unload the dishwasher, and he has an awesome belly laugh. Now if we could convince him not to wear his life vest in public....

Wednesday, June 27, 2012

the tough stuff

So I took Punkin to his dance class again today and it went pretty well. But that's not really the point. We arrived about 10 minutes early and after settling into our seats, a little boy from his class came up and asked me, "Is Punkin going to wear that black suit again?"

Now, it took me a second to register that he was talking about his compression vest. It's made by Spio and is amazing, although slightly difficult to put on. It's several pieces, one piece for the torso and a leotard type piece to wear over his legs. "I don't know. If he wants to wear it, he will."

"Why does he wear that thing?" Now I'm wondering where this kid's parent is, because normally by now they've intervened. Everyone in the waiting room is staring at us, so I have no clue how to proceed. I don't mind the question, I just have no idea if it's okay to engage this boy.

"Well, he wears it because it helps his body feel better." He stares at me. "You know how tags on your clothes or bright lights or really hot weather outside can bother you?" He nods. "Those things bother Punkin a lot. So he wears the suit sometimes to help his body to calm down and feel better."

Now everyone is really staring at us and I feel like I'm now the spokesperson for sensory integration disorder. "But what does it feel like? Why does he like it?"

"It feels like a big hug. It helps him to feel calm."

"But is he gonna wear it?" And that's where the conversation ended, because someone else he knew said hello and his  mom/sister/caretaker pulled him away and told him to be mindful of other people's space.

It was weird. It left me feeling oddly defensive. I wanted to yell, "Because he wants to and it's none of your beeswax!"  But he's a kid. And honestly, he must have had needs of his own or he wouldn't have been there. I don't mind the asking, I just never feel prepared to answer.  I guess it just reminded me that if this kid noticed a difference and thought he was strange, then a lot of kids must notice. And then I worry about bullies. *Sigh* We've come so far, but we still have a lot of work to do.

Thursday, June 21, 2012

take a bow!

I signed Punkin up for two classes offered through his occupational therapist's office. One is a sports class where they will learn and play a new sport each week and the other is a dance class. There are four children with various needs and they are learning an actual routine. It is quite possibly the cutest thing I have ever witnessed. Here he is practicing at Oma's house.




Take a bow!



Saturday, June 9, 2012

change in plans

So I had this sense of peace all school year because this summer I didn't have to worry about where Punkin would go for his summer day care; he would just go back to the program he attended last year. I signed him up, gave them my check, and anxiously awaited telling him he would be back with his summer friends. And then through a series of meetings, phone calls, and more meetings, it was determined that Punkin would not be able to attend this year; they simply felt unable to meet his needs. I think they are wrong, and they know that, but it is what it is and I began looking for something else.

I finally settled on sending him to a well-known, national center that provides meals and some field trips. Before actually enrolling him, I wanted to speak with the director to make sure the program would be appropriate. I emailed, I called, I called again. I stopped in. Someone called me back and told me to call a different person. I called that person, who never called me. So I signed him up anyway.

The big day came and I still hadn't received the additional forms I needed for him, like health history and such, so I took him in early to pick them up and help acclimate him to the new routine. His "classroom" was a small, windowless room in the basement set up with tables and one rug to play on. I saw one bookshelf that looked like it was about to crumble under the weight of the wooden blocks it was holding and another piled so haphazardly with books the entire mess would have spilled like a Jenga game if one title was removed. It just didn't even seem clean.

A woman sat at a desk right inside the door and greeted us, but didn't introduce herself. Another woman sat at a table working with a few other children and said nothing at all. I took Punkin over to the carpet to play with some Barbie cars, all three of which were missing wheels.

We stayed for forty minutes and I couldn't tell you even one staff member's name or relay anything any of the staff said to my son directly; I had no idea who was in charge. In that forty minutes, the kids just roamed around freely; there was no structure. And after asking, I learned that this was typical of the entire day.

Punkin tried escaping multiple times. It was time for me to go to work. I didn't know what to do. I knew I didn't want to leave him there. Could he wait until someone picked him up in a little bit? My heart sunk into my stomach. We left. I cried.

Sometimes the stress of it all comes bubbling over, and this was one of those mornings. This was also a morning I felt extremely thankful for friends and family who could take over and watch him (My mom will be with him from now on). Many, many parents are forced to leave their children in places they don't love because they have no support. I'm telling you, as a friend, one of the most precious gifts you can give a family of a child with special needs is a play date. As a teacher, one of the most precious gifts you can give a family is a sense of safety.

So what should teachers do to help families feel more welcome?
 
1. Return phone calls.
    Or write in notebooks, or send notes home. However you choose to communicate is fine, just do it. 

2. Be Organized. 
    Hey, I work in the world's tiniest classroom. No, really, I do. But it is bright, cheery, clean, and organized -- even without windows. That's a post for another day.
3. Introduce yourself to parents and children. 
    Nothing shows more respect for a child than involving them in conversation.
4. Provide parents with a schedule of your day.
    Maybe you can make up a new student packet with a  handbook, a list of basic supplies, and some classroom information such as your daily schedule and the best ways to contact you.

Read  more of my posts over at PrekandKSharing.

Tuesday, May 29, 2012

whole wheat tortillas (again)

I discovered 100 Days of Real Food a while back and have found some great recipes there, one of which is a slightly different recipe for tortillas. The instructions were more detailed and it called for warm water. I also used a hand mixer. The results were much better this time. The dough was a lot easier to work with and the tortillas tasted really good, even if they were a bit thick (my fault).








Find the recipe for the tortillas

here

.

Sunday, May 27, 2012

don't read while eating

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. 

Friday, May 25, 2012

we did it, guys!

The whole preschool and kindergarten team along with two amazing doctors and, of course, our friends and family, have gotten my delightful Punkin to this point. He is such a fun little kid with a great sense of humor.

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)

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!"

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).

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

PreKand KSharing

today. Check me out!


Friday, May 4, 2012

happy friday

Just in case it needed a little icing on the cake.

Tuesday, May 1, 2012

me and my medical problems again

Sorry for the quiet over here. Work has been like a full moon on a rainy day before Christmas break. If you work with children, you will understand what I mean. If you don't, I mean that no one remembers how to sit still, wash their hands, walk in a line, or keep from spinning in circles.

Anyway, on Friday Oma and I drove up to the big University to see the neurosurgeon, who said that my Chiari is so minor he wouldn't even really call it that and my problems are all food related. I felt rather deflated, really, not because he didn't suggest surgery (who wants their head shaved and their skull cut open?) but because he didn't offer many answers or actual advice. He essentially told me to go home and figure it out.

So, that's what I'm doing. I have looked up migraine triggers before, but this time I found a very comprehensive list of both environmental and dietary triggers. So now I've put myself on a very restrictive diet with the idea that if I slowly add  things back in, I can find out which ones are problematic.

Here's what I'm avoiding:
  • MSG (which is really only a problem when eating out at restaurants)
  • Cured meats like ham, salami, sausage, pepperoni
  • Chocolate
  • Caffeine
  • Alcohol
  • Buttermilk, Cheese, more than 1/2 cup of yogurt a day
  • Yeast 
  • NutraSweet 
  • Nuts and Peanut Butter
  • Tyramine, niacine, nitrates, and nitrites
  • Excessive amounts of citrus and more than 1/2 of a banana a day
So far I feel a little better. I'm still having a few symptoms that are not at all food related, though. And I did discover that I should not eat Dominoes pizza, not even just the crust.

As for Punkin, his new medication is working pretty well. It's going to take more time to see if this is the answer, but he is much happier and much easier to redirect at home.

Monday, April 23, 2012

all that running tuckered him out!

Punkin resisted playing with Play-Doh until I made a gingerbread man. He happily came over, set him aside while we made a clay pizza, and retrieved him later to put him "night-night" with a pillow and blanket.

Friday, April 20, 2012

day nine: funny joke

I finally receive the prescription. I am stoked. I take it to the pharmacy. We're walking around, Punkin is snatching up goggles and rubber duckies; I almost bought him Curious George flip flops, but they didn't come in his size. Why don't fun shoes and slippers come in anything bigger than a 13? Meanies.

And then they called us back. "We need a prior authorization from Medicaid. It will take one to two days for your doctor to fill out the paperwork, contact them, and send it back." Wah. Wah. Wah.

And better yet, today I got a call that Medicaid won't approve it at all and now we have to wait for yet another prescription. Wah. Booh. Hoo.

Also, kid has been throwing up A LOT. Our local pediatrician, who is never allowed to retire, has now prescribed two different medications for him -- one for morning and one for night. I also think that Punkin needs to eat smaller meals and probably fewer meals. :) 

In happier news, Punkin helped me draw this hopscotch board last week:


Tuesday, April 17, 2012

day seven: mommy has a meltdown

I'm sure I've mentioned before that I work with kiddos just like Punkin, several of whom over the years have taken medication. When that medication doesn't work or when it isn't being administered, life is frustrating for the child and for us. The work day is a difficult one to move through and as an educator you worry about the skills that might be lost.

As a parent, you worry until you cry on the phone with a rather unempathetic (did I just make up a word?) secretary. I'm assuming this particular woman and the nurse I spoke to multiple times between Friday and today have never personally dealt with giving a child serious mood altering medications. They just could not understand why I insisted on only speaking to the doctor.

Nurses are awesome. Nurses answer a lot of my questions on a daily basis. A nurse was the single most helpful person in delivering my precious son. A nurse, however, cannot prescribe medication. A nurse is not our doctor.

This is the third time I called. Today. The doctor left me a message giving me a direct line. Sort of.

"I'd like to leave a voice mail for the doctor please."

"I'm her voice mail."

 "Okay, well, that doesn't help me."

 "I can transfer you to a nurse."

"I don't need a nurse. I need to speak to the doctor."

 "The nurses can pass along the information to the doctor in between her seeing patients."

"No thank you." I start angry-crying. "She gave me this number so that I could reach her directly."

"Which number is that?" We talk in a circle for another 30 seconds.

"Will she call me when she gets back to her office?" (Meaning, is that her standard procedure?)

Laughs, "Well, I can't make her, but I'll give her the message."

More circles. She makes me talk to the nurse, who wants to solve the problem by talking to the doctor herself.

 "I am not comfortable playing telephone. I don't want you to try to relay information. I want to speak to her. If you could give me a time that she might be able to call, that would be helpful."

 "I understand (By this point both women had called me ma'am several times. Not good.) Her last patient is at 4:00."

 "Great."

 "In the meantime, is there anything I can do to help you?" (This poor woman.)

"No. No. He is going to need new medication. There's nothing you can help me with."

 "I see."

 Then I got to go to a meeting to confirm that Punkin can't attend the summer program he attended last year because they feel they can't meet his needs. So, deflated would be the word of the afternoon.

 Until.

 I finally got a call from the doctor and after explaining that Punkin is happy but full of wanderlust, I agreed to put him on Adderall XR. It will be a few days before I can fill it, so we'll have to tough it out. But she thinks maybe his rosy cheeks were related to the minocycline, so we are stopping that.

But the real joyful moment in the day was when I hung up the phone and Punkin brought me two waffles, with syrup, that he had toasted himself.

Monday, April 16, 2012

day six: give me ritalin

On Day Five, this would have been titled Mixed Feelings. But we went grocery shopping after school. Grocery shopping is my ultimate litmus test.

Saturday was a really good day. Punkin was the happiest he has been in a very long time, and both Friday afternoon and all day Saturday he was able to handle frustration and waiting much better than he has in months. Typically when he comes home he wants to eat "CHICKEN RIGHT NOW" even if he's already had a snack or is eating "CHICKEN RIGHT NOW" for dinner. But on Friday I was able to show him on the clock, "When it says, "Five - Zero -Zero , Michael will come and you can make CHICKEN RIGHT NOW." He responded, "Okay," and walked away. He asked me two more times, but accepted it both times and was able to wait until Michael, his respite worker, came to eat CHICKEN RIGHT NOW.

Sunday was a little bit trickier not because of his mood but because he could not sit still in church. And then when we went to our Sunday night church activity and he couldn't complete his craft without assistance. He's definitely having more trouble at school with his attention, focus, and ability to control his body than I expected. He is not being aggressive, though.

And then today he ran away from me at the grocery store three times.

We need medicine.

I called the doctor Friday to touch base with her but she wasn't in. I called again today and she hasn't called me back. I am feeling frustrated and I know Punkin and his teachers feel that way, too. None of us want him to lose the skills he's gained. But I am glad that I agreed to take the ritalin away so that I could see that it was causing his mood swings and that it was helping his focus more than I realized. Also, he's so darn sweet again.

Right now he is refusing to take the minocycline, which tastes bitter and has to be mixed with applesauce. I also have to mix his acid reflux meds with applesauce. Those meds don't taste like anything. So now he is scared of taking those. NOT COOL.

My instinct is to give up on the minocycline because 1. I do not want to fight about medicine every morning. No part of me wants strawberry applesauce thrown in my face. And 2. He has to take the acid reflux medication or he will throw up every day all over this apartment and I will end up in the corner in the fetal position. Also, 3. We can give him an extended release ADHD medication that hopefully would avoid the mood swings but still solve the behavior issues at hand.

Wednesday, April 11, 2012

done lost her mind

I feel as though I have stirred a pot that was once fairly calm. When I took Punkin for his ADHD med check with his primary care physician, I felt a little torn because he was doing so well at school but so .... not well at home. And I know that's pretty typical of kids his age; they save the best stuff for mom. But this involved hitting and throwing shoes, which I'm used to at work, but don't especially like. So since he was doing so well at school, in the interest of not rocking the boat, we decided to keep things the same.

Well, a few weeks later we had his appointment at the Fragile X Clinic and he showed the doctor all of his less favorable traits. So we are making a huge change. A really scary change.

WE ARE STOPPING THE RITALIN.

You read that correctly. I done lost my mind. I'm sure that's what my son's teachers thought when they opened up their email:

Punkin's developmental pediatrician and I had a long talk today. Despite how well he is doing at school, he is really struggling at home. Because he is doing well at school and not at home, she doesn't think an increase in Ritalin would be appropriate or necessary. In fact, I agree with her that I am unsure it is helping much at all at this point because he metabolizes it so quickly. We are both thinking that the Abilify is helping a lot and are excited about his progress this year because of your hard work along with the meds.
We want to try increasing the Abilify to 7.5mg (this makes me a bit nervous as a mommy) and stop the Ritalin all together. She also wants to add minocycline, which is an antibiotic that has been in studies for years now and is believed to work on the brain's synapses and protein production. If it is successful we should see better attention, better eye contact, and improved speech. We need to watch for a rash, loose stools, and joint pain. She also prescribed a probiotic to help with the loose stools. And she told me to make sure I apply sunscreen every morning.
My other concern is that the Abilify will make him hungry and he will have meltdowns because he wants to eat all the time. That said, I still think all of this is worth trying. I know several children who are on this antibiotic and it is really helping them.
I really, really need you to be honest with me about his behavior during this transition. I am also going to be looking into getting a body sock for home. He is seriously a hot mess of sensory disregulation in the afternoon.
So, unless I forget and do it out of habit, he won't have his Ritalin tomorrow and shouldn't have it anymore.

So how did today go? As I told a friend a few minutes ago, it was not awful but it was not awesome. His teacher said that he needed to be redirected more often and he had a few more off task behaviors such as taking off his shoes and crying. At home he was happy but bouncing off the walls. So there you have it. Day one down. 

Monday, April 9, 2012

fostering independence

We've had a few broken dishes at my house in the past few weeks. My son has reached a new stage called I Do It Myself. Most of us who work with, know, or have small people in our lives are familiar with this year or so of life that makes us simultaneously excited for the future and nauseated over the amount of money we will have to spend on hair dye to cover our new gray patches.

My son's independent streak focuses on two main areas -- using the microwave and dressing himself. He also really, really, really likes making toast. I've had success using picture schedules for routine tasks both at school and at home in the past, so I am going to make this one for him.




GET PLATE
GET BREAD

TOAST BREAD


GET KNIFE


BUTTER TOAST



PUT JELLY ON TOAST



EAT!

It's easy as a parent to want to step in and do it myself because it's faster, or because I'm tired of Punkin's little feet stepping on mine after a long day. But what I've learned as an educator and parent of a child with a disability is that it's more important to teach life skills for the long run.  So how can we incorporate this idea in the classroom?

1. Keep Quiet! Let children interact on their own before intervening. Don't speak for them before allowing them a chance to speak for themselves. This also means that sometimes when our instinct is to yell, "STOP!" because it's too messy or might be slightly dangerous, we need to allow our little ones freedom to act.

2.  Stop Anticipating! This is the easiest trap to fall into. We all see the empty cup at lunch and fill it up without thinking. Meal times are an excellent time to encourage language. When you see an empty cup and you know a child wants more milk, try making eye contact with the child and simply waiting for him to initiate the request. If he doesn't, ask, "What do you want?" and wait. Still no answer? Sign and say "more" by tapping the fingertips of both of your hands together.

If you have a child who is non-verbal or who has limited language, try taking pictures of your menu items and placing them near the child's place setting during meals. Then he can hand you the picture of the item he wants more of during the meal. For example, if you are having a sandwich, carrots, applesauce, and milk for lunch, the student would have a picture of each of those items next to his plate. When he wants more milk, he simply hands you the picture of milk. Then you can work on saying, "more milk."

3. Set Up Supports for Success. Using picture schedules can cut down on the number of verbal reminders required for a child to complete a task and has the added bonus of giving yourself a break from hearing your own voice repeated all day. 

Here's a simple hand washing picture to hang above the sink.
In all seriousness, though, children need to know that it's not only okay to use their voices, but encouraged. Nurturing their sense of independence into lifelong skills is one of the greatest gifts we can provide them.


I wrote this for PreK and K Sharing. Go check them out!