the other lion

i bigger?

2012-01-30T14:55:00.000-08:00

I have zero photos from Punkin's seventh birthday party. We stayed overnight in a local hotel and it went by in a flash, as did he -- swimming, opening presents, and running from person to person to say hello. The following two days have been a bit of the post birthday blues. He misses his Auntie, and I think all of the attention was a bit overwhelming. That being said, can you believe the eye contact I got in this photo? He looked up from his iPad, per my request, and I snapped the picture just in time.

the apple does not fall far

2012-01-26T04:01:00.000-08:00

So the big shindig is Saturday, but we had to go out to eat on the actual day. It's, like, illegal or something to cook on a family member's birthday. We're all finished eating and waiting to pay; Punkin is falling apart by the second. At every mention of birthday, he yells, "NO!" and turns away from everyone.

His next logical choice is to rip a hole in his take home box, which he cries about. A lot. Everyone is staring, I'm sure, wondering what the heck, "MY BOX! I BROKE IT!" is all about. So then he rips the lid off of the box. As I'm trying to talk him down and explain that yes, we will in fact be going to the car as soon as he can climb out of the booth, which is of course one of those corner ones so we're trapped, I hear a whoosh. Chicken strips and fries are flying; I am 95% sure I saw one hit my friend in the head.

Punkin is destroyed: he's trapped, he's tired, and now he's gone and made a gigantic mess. I look at him and even before the words start coming out I feel the laughter in my belly. I know the sentence is ridiculous, but I don't know what else to say. "I know you want to leave. I know you are sad and angry. You can't throw your food. Your chicken ...." The snickers start. I turn my head, "I will not laugh when I say this. I will not laugh when I say this." I turn back to Punkin, "Your chicken hit our friends."

And that's when it was all over for me. Poor Punkin is sobbing, our poor friends are standing around the booth trying to let us out, and I am crying from the mental image of a rubber chicken bonking my family on the head.

I really thought it couldn't get any more ridiculous than, "Why do you have a ham rind in your pocket?"or "Get your face out of the toilet." But it can. Oh, it can.

Honestly, it reminded me of the time my parents took us out to eat when we were young and my mom told me to blow on my soup to cool it off. So I took a spoonful and did just that, sending it soaring right into the next table.

my punkin,

2012-01-23T20:53:00.000-08:00

You're seven. Wow. So we really made it this far, huh? You know, I guess I thought I'd be getting more sleep by now. People always ask me how you're doing -- what a loaded question.

Your favorite thing to do is swim, and your second favorite is driving Hot Wheels on the windowsill. You love all things sparkly and pink, and are always asking for those sequined shoes the girls are wearing when we go shopping. I can't let you do the shoe thing because people don't understand that boys like glitter, too, but I can (and did) buy you a Barbie for your birthday. I may have also splurged for the Glam Convertible. Hey, none of your Tonka trucks have seats.

I worry. I worry I am giving you too many medications. I worry I am not engaging you enough. I worry about next year and whether you will be able to maintain the progress you made in the past eight months. And most of all I worry about what happens when I'm not around to protect you. And then I have to give it to God because it's too big for me. So I want you to know that when you're out of my arms, you're in His.

Do you know what you've accomplished, my Punkin? You can write your name. You can sing the ABCs. You can get yourself a drink of water from the kitchen faucet. You can help yourself to the cookies when I'm not looking. You can stop and think before you act; you use your words more than your hands when you're upset. You can pee and poop in the potty! You can jump off the edge of the pool. You can dress yourself and feed yourself and put on your shoes. You can light up a room with your smile; you can convince a group of adults to get up and dance. You can tell me you love me without any words.

You amaze me with your resilience and your joy. You make me better. We're both working on it, this life thing, together. One day at a time with the best surprise that's ever been handed to me.

I love you.

love that kid

2012-01-19T18:08:00.000-08:00

When Punkin brought this home, I asked him what he wanted to do on his birthday and he said, quite enthusiastically, "BALLOONS!" I asked him what we should eat, "CAKE!" I asked him what else we should do, "PRESENTS!" What kind of presents? "A TRUCK!" A couple weeks later when I asked him again, he added, "JAMMA PARTY!" I've created a pajama monster.

And I'm just going to present this without comment. I just. There are no words for this.

two things

2012-01-16T19:43:00.000-08:00

So I got a letter from Medicaid the other day. I don't receive many letters from them, so I don't love opening them as much as the ones from Social Security -- the ones telling me how even though I sent them my new child support order five months ago, they just now realized that they've been sending too much money and I now owe them $149.76 on top of the $400 I already owe for the month I actually called AND went in to tell them they paid us too much and they insisted that, no, the check was correct. The funniest part is that they send a little slip of paper with it like you're expected to send them a check back. If I had $549.76 in my bank account, I wouldn't need SSI, folks.

Anyway, the letter from Medicaid wasn't so much a letter as a declaration. Punkin's doctor asked them to approve Prevacid Solutabs for him, the medication he took from 18 months until age 6. They're pricey, but handy for kids because they dissolve in a spoonful of water and taste like cherries. I found out they weren't covering it anymore when I went to the pharmacy for a refill and they handed me a bottle of liquid ranitidine, which tasted like salty fish death. Punkin refused to take it, and I don't blame him. It was awful. So now he takes ranitidine in pill form, which he basically chews along with an M&M, but which also taste and smell disgusting. And there's the part where I'm not really sure it's working.

Medicaid's letter had one of those oversized "DENIED" stamps on it explaining that they want him to try omeprozole for 60 days, which "can be opened and sprinkled over soft foods" before they will discuss the Prevacid again. I suppose their reasoning is that it's the same type of acid reflux medication as Prevacid, but costs pennies in comparison. But while most children would think it's fun to take a bite of applesauce with medicine sprinkles, Punkin will do no such thing.

So there you have it.

In completely unrelated news, we went to a chili cook off on Sunday and my son -- MY SON -- played with the other kids just like any other kid would. They ran around in princess costumes, jumped on the couch, and ate chicken nuggets "with my friends." He refused to sit with me. And towards the end of the night, one of the girls brought him a pillow and blanket for watching Dora. Several times today he asked about going back to "see da kids."

didn't even break a sweat

2012-01-10T20:32:00.001-08:00

Every parent has been there, and certainly every parent of a child with a sensory-processing disorder, autism, fragile x, or overall delays has been there more times than they care to remember -- sitting in the doctor's office waiting for IT to hit the fan. You're anticipating the moment you'll be holding your son on your lap, perched precariously on an exam table, sweating, your son's head sideways against your chest, held with one arm, the other arm holding his arms back while your legs wrap just below his knees, all because the doctor dared to ask to look in his ears.

And then he has to check the other ear, of course. Don't even bring up saying "aahhh." Now that's someone's funny joke. I can't even explain it to you; I'm not even going to try. Let's suffice it to say that my son can open and close his mouth faster than a fly can buzz around a quiet room on a hot day. The kid has talent.

"Say 'ah.'"
"Ah," Clamps mouth shut on tongue depressor.
Tug - of - war ensues.
Repeat.

So today I take him in because he keeps coughing and sometimes vomiting and it's no good. The doctor at the fragile x clinic suspected asthma, and honestly so do I, but I wanted to see what his pediatrician thought. The final word was that it may be asthma, but we have to make sure his reflux is under control before we make that determination. So I have to work extra hard to convince Punkin to take medicine that tastes disgusting and his doctor will petition Medicaid to pay for him to be on the Prevacid Solutabs he was on for years until some committee decided they shouldn't be covered.

Anyway, the point. He ripped the paper on the exam table ONE time and then threw it away. Then he did a puzzle. Then, THEN, he let the doctor look in both ears while I sat across the room. And he opened his mouth the first time when prompted. I don't know who that kid was, but I hope he comes with us to the doctor every time.

the power of praise; catch me being good!

2012-01-09T04:17:00.000-08:00

I wrote this over at Prek and K Sharing. Check it out! They are a wonderful group of educators.

When I first started working in the school system as a Paraeducator, I was right out of college and four months pregnant. My degree is in English, History, and Women's Studies; I had completed one education class, Foundations of Education, a course that focused more on the history and philosophy of education than actual practice.

So there I was, thrown into the school system with no training except my own life experiences, and paired with a third grade student with significant physical needs and behavior struggles. He was also extremely bright and prone to argue. About a third of the way into the school year, he turned to me and said, quite emphatically, "Why do you always catch me being BAD? Why can't your eyes ever catch me being GOOD?"

Now, if we're being honest, my initial internal response was, "You have to actually BE GOOD for that to happen." What I said was, "I see you do lots of good things. I'm sorry you feel like I don't see that. Do you think we should work on that?" He agreed that we should, and I promised to come up with a solution. "How about for now, we just put this post-it note on your desk, and every time I catch you listening to the teacher, staying on task, using nice words, and doing the right thing, I will make a tally mark. Then if you get five tally marks, you can have a sticker." He thought this sounded great.

I never came up with a more permanent solution, and he never needed the sticker, although I did give it to him as promised. Every time I came and made a tally mark on that post-it, he beamed. All he wanted was acknowledgement of his efforts, because he was trying even if he wasn't always successful. This strategy worked for him; he argued less and felt more confident in himself.

Leaving this child the following year, in the middle of the year no less, was painful for both of us, but he was ready for more independence and I needed to move to preschool for a variety of reasons. I have always taken this lesson of "catching me being good" with me to the younger children who have special needs, with whom it is so easy to become frustrated. Often times they are so hungry for attention that they will do just about anything, including climbing furniture and hitting friends, to gain it. When we give them attention for positive behavior we reinforce what we want and help extinguish what we don't want. If they are receiving attention for sitting on the carpet or sharing a toy, there's no need for disruptive behavior.

In preschool, though, I learned a bit of a new language. Most importantly was "good choice" and "bad choice." Children aren't bad or good, they make choices just like adults do. Most of us want help learning from the times we make a mistake, and we all want a pat on the back when we succeed.

Here's an example of a very simple chart you could use. You could even make a page with five of them on it so that the entire week would be visible. This particular student needed to focus on short periods of time, therefore I used one sheet per day . If he was given ultimatums that were too big or too far away, he almost always failed, not because (like some preschool and kindergarten students), it was too far away for him to remember but because the idea of "being good" for that long felt unattainable.

If you had a smiley face stamp or sticker, you could use that in place of tally marks. You would have to decide if the student received any additional reward for achieving a certain number of good choices in a day.

we're working on it

2012-01-02T16:43:00.000-08:00

But, but, theotherlion, in that last post about Christmas you didn't even mention a meltdown. What gives? Do we have to kick you out of the special-needs club?

Uh, no. He still broke his brand new red truck from Santa when he threw it down the stairs, woke up between 5:00am and 6:00am every morning, and melted into a giant puddle of tears and face-slaps on New Year's Eve over being temporarily denied the privilege of wearing his pajamas.

Honestly, though, he did awesome. Every year gets easier and we have several things working in our favor. The first is that our family is extremely relaxed. The second is that we stay in the same giant house each year with space to either be with other people or be alone. There's also the part where I bring about 5,000 comfort items from home to help him feel safe.

This year those items included the following:

Two packages of hard salami, a loaf of bread, and mustard for sandwiches
A 64oz bottle of Welch's Grape Juice
Chips and cheese sauce
Generic Lucky Charms
Two cans of Very Cherry Fruit Cocktail
A beach towel
His blanket
His toys (a rocket ship, several trucks, markers)
A portable DVD player and a variety of DVDs
His iPad with newly purchased episodes of his favorite shows (the place we stay does not have internet)
Clothes that were mostly pajamas and sweatpants
The book "No, David"

I don't know about your child, but mine does not like eating or using the bathroom when we travel, hence the grocery list. He also becomes very anxious around large groups of people; there are at least 24 people who attend this gathering, sometimes 30 -- so he gets full access to his own media and comfortable clothes. I refuse to spend three days arguing over movies and wardrobe; I want to enjoy my time with my family.

Last year he ONLY ate chips with cheese and maybe two hot dogs. This year, he still finished off the special groceries I brought, but he also tried some of the other food that was made at each meal. He also only had one and a quarter meltdowns, which is pretty good.

And the early wakings? Well, that's what the nachos are for, duh!

so...christmas

2012-01-01T19:24:00.001-08:00

We attended our annual family reunion over Christmas break this year. As usual, it was awesome. Here are the highlights.

There was peach-blueberry pie.

There was a strong sense of independence, which I nurtured.

There was the largest Toodles Punkin has ever seen.

There was some jerk who wore the same sweater as me on New Year's Eve.

There was a game that I played three separate times.

And there was a PAJAMA PARTY!

it's gonna be a merry christmas

2011-12-24T07:26:00.000-08:00

I apologize for the lack of posting. There was this whole thing on Monday night/morning where I called 911 because I thought I was dying. In the end they diagnosed me with "non-specific chest pain" probably related to my acid reflux. (Punkin didn't even wake up. Oma and Opa came over to help.) It hurt, you guys. I think it hurt worse than my gall bladder.

But things have been happier. I received an extremely kind note in the mail with a gift card for the grocery store and we've been lavished with early Christmas gifts. And best of all, Auntie is home. We made lots of cookies.

Some family friends came over to my parent's house last night for dinner and brought their puppy. Can you believe this? What a big kid he's becoming!

we did it!

2011-12-18T14:06:00.000-08:00

Punkin's Sunday School Christmas Program was today. I really didn't know what was going to happen. I felt like I hadn't prepared him enough. But you know what? He rocked it. I stood on the risers next to him while he sang and then we sat together on a bench off to the side during the speaking parts. He made it about half of the way through before he tapped out with a simple, "I done now." And he kept his costume on!

(I guess I should add that every time I thought he might be getting anxious, I grabbed a Skittle out of my pocket.)

people are awesome

2011-12-14T20:09:00.000-08:00

If you have ever given a dollar to Toys for Tots, dropped a quarter in a Salvation Army kettle, or chosen a tag off of an Angel Tree, I would like to thank you. You rock, and so does the person who picked Punkin's name off of the Angel Tree and donated these perfect gifts to us. He's going to lose it when he sees all of those markers.

letting it go

2011-12-09T04:28:00.000-08:00

I wrote this blog for PreK and K Sharing. It's an awesome collection of people who work in education. Check it out!
____________________________________
Cooking with Punkin should be renamed, "Making something fun to eat while Punkin scurries in and out of the kitchen." It's just like with arts and crafts; you ask him to do it and he protests (loudly). You show him what the activity is and he glances in your direction. You sit down and begin the activity yourself and he dashes over, shoves you out of the way and declares, "I DO IT!"

I downloaded the Starfall Gingerbread man app for his iPad several months ago, and aside from YouTube, it's the most used feature on the device. It teaches shapes and colors by allowing the child to pick what kind of eyes, nose, mouth, and buttons the man should have. Surprise, surprise, when I looked at Punkin's cookie tray (where all of his men are saved), they all looked the exact same.

His interest in the app made me finally decide to use the oversized gingerbread man pan his paternal grandma sent last year. Not being so fond of gingerbread, I made a sugar cookie. Not being so good at remembering, I failed to purchase candy and frosting. So we gave him "CIRCLE EYES! CIRCLE EYES!" with Fruit Loops and buttons with marshmallows.

Punkin loved him, but refused to eat him. The irony of asking him to cook and then eat his beloved friend did not escape me, so I wasn't really surprised when after he saw me break off a hand, he started breaking the entire cookie and piling it up on the cooling rack.

This is the point when I have to decide whether I'm going to be angry about a cookie. Nope. Not worth it. We had fun making it, and my co-workers and I have enjoyed eating it after all of our preschoolers pass out at nap time.And I guarantee that when we make a second gingerbread man, he will remember the first time and be much more attentive.

Punkin is the perfect example of how a child with fragile x syndrome learns. He needs to see the entire process happen and then go back and complete the steps; he needs to know that his work has a purpose. He isn't going to stir some cookie dough just because I asked him to -- he needs to know there's a super cool gingerbread man in his immediate future. As he has developed cognitively, he's been better able to deal with situations like this one because he can attend for a longer period of time and he can process more of what I'm saying. In the past, though, it might have caused anxiety. The anxiety would have manifested itself in aggressive behavior, and I never would have gotten my cookie.

So what are you to do if you have a student similar to my son?

1. Stop worrying about eye contact. As parents and teachers we often become preoccupied with eye contact. I've struggled with this one personally. Giving people eye contact increases my anxiety and quite honestly distracts me from what they're saying. I'm so focused on the sensory information that I'm receiving from looking at their face that I forget that we're having a conversation. Also, try sitting next to children instead of across from them. It's less intimidating and doesn't imply that you will be demanding the dreaded eye contact.

2. Work on the entire process, not just the pieces. Punkin's former preschool teacher, writer of How Long is this Hall, figured this one out when he was struggling with prewriting skills. He tore paper and generally threw a fit when asked to work on making lines down, lines across, and circles. So she introduced him to writing his entire name. From what I understand, there was an immediate change in his willingness to work; he even began writing letters on his own, sometimes on the wall in our living room.

3. Use visual aids. This might be a picture schedule for the entire day or a specific activity. Sometimes something as simple as a first/then board eases anxiety because the student knows what is coming next. Just laminate any piece of paper and draw a line down the middle. On the first half, offer a picture of the first activity. On the second half, place a picture of the next activity or the child's reward for completing the task. I've found it especially helpful to always have a preferred item be that last picture in a schedule. So if I make a picture schedule for hand washing, my pictures would be turn on water, get soap, rub hands, turn water off, dry hands, go play. Here is an example from my own house of a toileting schedule. I even added a candy bar at the end; this was very motivating! A first-then board might just have the toilet picture and the play picture.

4. Pair more challenging activities or new activities with ones that are familiar. If you're introducing a new activity, this approach can be especially helpful. Children want to please adults, they want to be successful, and they want their days to be routine. So if you give them something familiar before and after the new or challenging activity, it can provide all of those supports and still give you a chance to work on a new skill.

6. Pick your battles. So he broke the cookie. Eh. If that's the worst thing that happens all day, then it's an awesome day.

a few of our favorite toys

2011-12-05T21:47:00.001-08:00

Buying presents for a child with a disability can be an overwhelming experience. For a child like mine, with limited verbal skills, lower than average cognitive abilities, challenging behaviors, and sensory aversions, it can feel impossible. This is my train of thought when I'm standing in the toy aisle: OH IT'S SOOO CUUUTE! Will he know what to do with it? How easy is it to break? Is this one of those toys where I'll have to buy two? Cause sometimes he only plays with a toy if it comes in a set. All he wants is a truck, anyway. And then I walk away with nothing. I thought I would share some of our favorites, both current and from years past, that are all under $25. In the end, always buy for your child's developmental age and not their chronological age -- both of you will be happier.

Playskool Busy Gears. Be sure to also check out Busy Poppin' Pals and Poundin' Bedbugs

Fisher-Price Brilliant Basics Snap Beads.

My extended family may remember these beads from two years ago at Christmas. Some of the best toys are the simplest.

Crayola Color Bath Dropz

Crayola Glow Board

Crayola Bath Crayons

The bath crayons and board were so nice when Punkin was in his Tearing Paper stage. It encouraged him to work on prewriting skills without the stress of actual paper and pencil.

Fisher-Price Brilliant Basics Nesting Pots and Pans

Nesting cups make noise, but not too much noise, and help develop critical thinking skills.

Melissa and Doug Jumbo Cardboard Blocks

Melissa and Doug Wooden Cutting Food Set

Melissa and Doug make colorful, easy to grasp wooden puzzles and innovative shape sorters as well. These blocks were a favorite because they are very durable (had them for 4 years now) and won't hurt if they accidentally hit you from across the room. All of the pieces in the food set are held together with velcro, which I think provides the right amount of resistance. I've seen my son transfer the skill of being able to cut this food over to real food. It's a great way to encourage sharing and independence, too, when you sit down to a pretend meal. And in case the thought of wooden food brings visions of black eyes, they make a felt pizza party set as well.

I'd love to hear your favorites!

i cook

2011-12-04T19:49:00.001-08:00

That thing on his head would be the cover for my parent's toaster. Punkin put it on, which really wasn't that odd for him, and then I realized that he thought it was a chef's hat when he asked for the oven mitts. This is the best shot I could get -- he just would not stand still. Imagine that.

is that my kid?

2011-11-30T18:35:00.001-08:00

I've written here briefly before that something magical happened this summer. My son matured, as much as a six year old who is developmentally four years old can mature, over a few months. He demanded independence, he played alongside or even with his peers, and the length of his sentences became longer. And then in the early fall the decision was made to add Abilify along with his Ritalin to help with aggression and ADHD.

It's been about two months since we started the medication and the only negative side effect so far is that I need to have a small meal ready for him at 3:00pm or he breaks down. The medication alone didn't make the difference. It's the combination of the medication, the summer program with typically developing children, the new teacher and other support staff at school who understand his needs, and encouraging the new surge of independence. Oh, and his mom isn't half bad either. The iPad helps, too. This is the list of noteable accomplishments:

1. He wakes up in the morning and snuggles in bed with me for 30 minutes (with his iPad) every morning before demanding we get up and eat breakfast. No stomping. No running. No shouting. It's very peaceful.

2. He brings home papers every night that aren't shredded. He's written his name on the top, colored the picture, and kept it in one piece.

3. He walks down the hall at school or down the aisle at the grocery store all by himself. Sometimes at the store he still wanders off, but he listens when I yell, "Stay with mom or time out!"

4. He brings home papers in one piece.

5. When he goes to the integrated kindergarten room for Science and Social Studies, he offers answers to the teacher's questions. Like, she asks the class and he raises his hand to answer. And his answer makes sense.

6. Do you notice a lack of poop stories? That last one may have been the final hurrah. He goes all by himself, y'all.

7. He doesn't sit on his friends anymore, but he does still sometimes kiss them I think. And he hugs his best friend every morning. It's the cutest thing I've ever seen. Actually, in general, even though he's struggling with sharing his teachers with a new classmate, he's getting along very well with all of his classmates. He's just a little jealous right now.

8. At his last IEP, they said he no longer needs a behavior plan.

9. He plays pretend. He still won't use his Little People in the Little People Bus or House, he'd rather use cars or straws, but he uses them like they are people. It's less self-stim and more actual imaginative play.

10. He is using his words more and more to express his frustrations, his wants, and his concern for others. I was fake crying the other day (it's a long story) and he came over and patted my arm, "No cry. Is okay. Give me a hug." And today when I came home after his respite time he said enthusiastically, "Hi, Mom! Is good a see you! How your day?" And if my heart wasn't already melting, he showed me his artwork from school that was still in ONE PIECE!

i get more tape?

2011-11-26T08:02:00.001-08:00

This is how we amuse ourselves during the final hour of Thanksgiving preparations, the hour where you're just waiting for the little timer on the turkey to pop and the sweet potatoes to bubble. Some people might watch football. Some people might read a book. Some people might share memories of the past year. We break out the masking tape.

In fairness, though, we did share what we were thankful for this year once we sat around the table, and I must say that my little Turkey tops my list.

erika: mother, aide, rainbow-maker

2011-11-22T05:01:00.000-08:00

(This is a post I wrote for the collective blog Pre-K and K Sharing. Check it out sometime -- there's some cool people writing there!)

When I admit, out loud, that I not only have a child with a significant disability but that I also choose to work with 3, 4 and 5 year old children in a special education classroom, it even gives me pause from time to time. I wonder if the person I am speaking to is thinking, "Does this woman enjoy pain? Does she milk rainbows out of her frustration? Who gives her those really good happy pills? How does that work for her, exactly?"

Sometimes it doesn't work very well at all. Sometimes I feel very overwhelmed by sensory needs, impulsive behaviors, unintelligible speech, and hearing my own voice repeat the same phrase twenty five times in two minutes. Mostly, though, it has been a blessing I never expected. I never meant to work as a ParaEducator for long; it was a job I applied for right out of college when I was pregnant with my son. But after seven years I have to admit I feel strongly that the education field is exactly where I belong.

My son has fragile x syndrome, an inherited condition that causes mental impairment, ADHD, autism, and sensory processing disorder. Having a child with a disability has given me the perspective I need to work with children who have challenges and communicate with their parents.

We've all had that child who frustrates us, who makes us think we cannot possibly make a positive difference in their behavior. Sometimes the child needs a picture schedule to help ease anxiety, sometimes the child responds well to a behavior chart or other tangible positive reinforcements, and other times just the structure and consistency of school is enough to extinguish negative behavior patterns. And sometimes none of that works and we find ourselves crouched in the corner pulling our hair out.

It's important to remember, though, that you aren't the only one who is having a bad day. That child is struggling, too, and their parents are probably having a lot of hair-pulling nights at home. As the parent of a child who often gave his preschool teachers a run for their money, I'd like to give some thoughts about communicating with parents of disruptive children.

Don't say, "Johnny had a bad day." This tells me nothing. Instead try, "Johnny struggled with controlling his body. He touched his friends without asking and often got up from his seat during carpet time. I had to ask him several times to complete the same task." Now I can talk to my son about keeping his hands to himself, tell his doctor about his difficulty remaining on task (if it continues to be an issue), and I never heard the words "bad," "problem," or "naughty." And please remember that there is always a reason for disruptive behavior, even if we don't see it.

Tell us something good. I don't care if the best part of my son's day was that he loved the chicken nuggets at lunch, I want to hear it. In our program, we call it "sandwiching." We talk about something we're learning in the classroom, talk about a problem we're having or a difficult part of the day, and then say something positive. Here's an example: "We're working on the letter Rr this week. We made tissue paper rainbows. Johnny enjoyed making his, although he was upset when we had to clean up and threw the materials. He loved the chicken nuggets for lunch and did a great job using his words to ask for more."

Sometimes parents are the experts. Especially when you're working with a child who has a syndrome, you may find that the parents have extensive knowledge of the condition. Take advantage of all the work they've done! Ask for copies of articles they've read and for notes from the conferences they've attended. We want to help. We really, really want to help.

Mostly importantly, though, remember to laugh in the funny moments, like when a boy is hiding a rind of ham in his pocket because he doesn't want you to make him eat it or when you have to say things like, "Get your head out of the toilet, honey." As parents, more than anything, we want you to see our kiddos the way we see them -- as loveable, silly, and full of potential.

me, being crafty

2011-11-19T05:23:00.001-08:00

I've been trying to figure out what to put above Punkin's bed since we moved in back in April. I had plenty of framed pictures, or pictures that could be framed, but there is potential for injury in that situation. I found these at Target last night, and they might be perfect -- as long as Punkin doesn't figure out that they are stickers that he can peel off. They were $10 and they don't hurt when you throw them.

make sure you get my good side

2011-11-16T15:05:00.001-08:00

She's a 2007 Accord LX. My friend Jennie said the 7-year warranty because she's Honda Certified makes her sexxay. I'm hoping that because she doesn't come with $250 a piece alloy wheels, just regular steel ones, I may get to keep them for myself this time.

a little bit mushy

2011-11-15T05:03:00.001-08:00

I know, I know, it's weeks too early to put up a Christmas tree; but when you have a three-day weekend, a crabby child, and a need for cheer, the logical decision is to break out your pre-lit Northern Pine. Last year I spent $1.99 on an uber-glittered gold star because we didn't have a proper one and I really thought Punkin would burst out of his skin when I unwrapped it this year.

Not so much. He was more like, "meh," until he saw the blue star. The blue cloth star. The blue cloth star with the Christmas tree on it. "Dis one, Mommy. I foun it! I did it!"

And you know what? It broke my heart -- but in the good way. In the way where it instantly gets rebuilt with liquid love glue. See, I found that star in a bin the first year I went to pick up presents for Punkin at the Salvation Army's Christmas Assistance Program (which is monumentally awesome by the way).

And I know it's just a kid who wants everything the same telling me, "Mom, this blue star is the star we used last year and it's the star I feel comfortable with using again." But it's also more. It's a reminder of how silly it is of me to think there would be something better to adorn the top of our tree than a simple, physical reminder of the love of God demonstrated through the kindness and generosity of strangers.

When we were finished hanging ornaments, Punkin stood back and said, "Is booful."

"Punkin, when you see the tree, you can remember that Jesus loves you and that Mommy loves you."

i should have taken the trunk liner out before i left her

2011-11-09T16:00:00.000-08:00

June 26, 2011

July 8, 2011

November 4, 2011

I can only hope her parts live happily on in other Accords across the nation.

my kid is awesome

2011-11-07T18:48:00.001-08:00

I told him the letters and he wrote them. No lie. He spelled Oma, too.

ice cream, i need ice cream

2011-11-06T19:44:00.000-08:00

Once upon a time I owned a 1998 Toyota Camry. I crashed this Camry into another car on a perfectly beautiful day. The shop that repaired it had to fix the repair because the paint peeled off, and even so months later it peeled again. At that time I also discovered that the power-assist on my brakes was broken, which was likely the cause of my accident. By the time I sold the car several years later, for $300, it had mismatched wheels, one spare tire, a power steering fluid leak, a wobbly rear suspension, and a front end that rattled to the point that I feared it may fall off when I drove above 45mph. And then there was the second accident, this time on a snowy day. The car wasn't in a good place.

So hooray, I got a new car -- a 2006 Honda Accord. Two weeks later, someone stole two of the alloy wheels and the brand-new tires. $500 deductible to replace $800 in wheels and repair $800 in body damage. Then, just a week ago, I noticed that the top of the door was bent as if someone had tried to break in. And Friday? Friday I crashed my car.

I am not meant to have nice things.

I was driving during my respite time at 9pm on a very busy street when I saw that an SUV was stopped at a green light. I hit the brakes, but not soon enough. My front bumper went under her back bumper, my hood crumpled, and all sorts of everything shattered. The airbags, however, did not go off. And I have a lot of airbags. The woman I hit called 911 and then told me that there was a car stopped in front of her, and of course that car had driven away. Lovely.

I cried. A lot. I've been through this before, but for some reason this time just sucked so bad, I think because there is the possibility they will total it and because my head hurts.

So, in an effort to make myself feel better, I will think not about how Punkin woke me up at 2am or about coming up with another $500 deductible (that's an entire paycheck); I will instead pray, know that God provides, be thankful that I am alive and in working order, and I will picture this:

Gracie, the church's comfort dog, with Punkin during worship today.

is my punkin? is mine?

2011-10-31T17:43:00.000-07:00

He never remembered to say "Trick or Treat" at the door, only as we walked on the sidewalk, but he never forgot "Tank You!" So sweet, that boy. So sweet.

I know this blog has been heavy on pictures and light on words, but this momma's been heavy on migraines and light on relief. So here's "PUNKIN HERO!" with his glo-sticks (thank you, Kendra). He didn't like the mask that went all the way over his head, but he liked this one that we had bought earlier in the season with a cape. So we morphed the two costumes. He had the best time. I think he would have lasted all night. Now to find a way to hide the stash.....

puppies and ponies

2011-10-26T08:00:00.000-07:00

My son, on a pony during a trip to a pumpkin patch. He's not scared at all. Best $4 I've ever spent.


The obligatory picture of Punkin on a hayrack ride.

In case you didn't believe me the first time, it's Punkin, that's my son, on a pony. That's like a horse.

"Go walk?" This puppy belongs to Punkin's dear friend and soon-to-be respite worker.

One of Gracie's handlers brought her to church and had her sit with Punkin. Again, he insisted on showing her his iPad.

doobeedoobeedoowaa agent p

2011-10-24T18:16:00.000-07:00

We went to see Phineas and Ferb Live! on Friday with some very good friends from our former preschool (long story). You'd think it would be difficult to attend an event like that with a child like mine, but in reality the biggest fight was over who got to wear the Perry the Platypus hat.

He totally won, per usual. AND I bought him a $12 plastic cup filled with a snow cone. Winner winner chicken dinner.

gracie

2011-10-16T13:28:00.000-07:00

This is Gracie, our church's comfort dog. She visits people in the hospital and plays with the kids in our school. Punkin met her the first time today during our contemporary, family-friendly church service. He stayed next to her the entire hour, touching her nose, petting her ears, and showing her his iPad. She's the calmest dog I have ever met, and I'm pretty sure she's a fan of Mickey Mouse Clubhouse.

this, from a cat person

2011-10-11T22:19:00.000-07:00

When I was a little girl we lived in the middle of nowhere. I idealize this place in my mind, I know I do, and I feel that it's okay because it was my childhood home. The farmhouse, the acres of grass I never had to mow, the strawberry patch, the pig manure across the road that conveniently attracted all of the flies away from our property, and the night sky -- all of it has a smell and a sound and a feeling inside of me.

One of the realities of living outside of a town with a population of 100 (?) people, though, was that the roads were not paved. They were all gravel, which was quite frustrating to those of us who enjoyed rollerskating and bike riding. It be bumpy on gravel. Just sayin'.

So one day when I was in first grade, my sister and I are across the road at an honest -to -goodness farm and their dog, who we are already afraid of, comes charging out of the barn. So we take off on our bikes, which makes the dog run faster. My heart is pounding as I pedal as furiously as possible down the gravel road back to our house as the black and white mutt chases us, barking and baring his teeth, and BAM I hit a rock. I fly. I am the space shuttle being thrown from my boosters. I'm over the handlebars. I am hitting the gravel. Forehead. Chin. Palms. Elbows. Chest. Knees. Ankles. There was crying.

This event did not help me like dogs. So I get it. Dogs can be scary. It's only been recently that I could say, "Yes, I like dogs, " rather than just appreciating how they make other people really happy. I even think I might be able to live with one someday. Maybe. I like visiting them for sure.

Punkin is petrified of animals, and he hasn't even been thrown from an aqua 10-speed, but he simultaneously adores them. He is currently obsessed with two dogs, one of whom lives next door to my parents. He's learned to play fetch with her and just two days ago petted her all by himself for the first time. She's lived there his entire life. Anyway, I too may be falling for her -- and not just because she brings her frisbee to me over everyone else in my family. On Sunday I stayed with Punkin's Sunday School class. His teacher asked the kids to draw a picture of something they celebrate.

"Four legs, Mom. Is Annabelle. Go see Annabelle? I pet her?"

don't worry, he's still calling guys at the grocery store, "daddy"

2011-10-09T14:28:00.000-07:00

My son is amazing me lately. Since we've started the Abilify, we've only had one big meltdown, and that was at school. Turns out he hadn't taken his Ritalin (found it under the couch cushion), so that was the source of the problem. The Abilify increases his appetite, but the Ritalin stifles it. Since he hadn't had the Ritalin, he felt ravenous even though he'd eaten half a chicken breast, a scoop of vegetables. and a small bowl of grapes for breakfast. That wasn't a typo -- he had chicken and vegetables for breakfast. Anyway, when he's hungry, THE WORLD IS ENDING. This is why I try to carry snacks in my purse. Chairs were thrown, tears were cried, and he generally lost his mind.

Now that he's been on the medicine for a little over a month, though, I think the side effects are easing up and the good effects are more noticeable. It's like the Abilify helps bridge the gap between non-Ritalin and Ritalin time. Because even with each dose of Ritalin, you really only get four hours out of it. Two of those hours are prime hours. The other two are spent waiting for the medicine to kick in and waiting for the next dose. I am not noticing this anymore. I'm not going, "IS IT 3PM YET??? Is it now?? How about now?"

He is a bit whiney in the afternoons, but I'm hoping that's the result of a number of issues in conjunction with the Abilify and will taper off soon. Time will tell, I suppose. Maybe he's just turning into a drama queen like his mother. He insisted on going to the childrens' message by himself at church, and when it was over, he stood up and exclaimed, "I DID IT! CLAP FOR ME!!!" Before that he showed me his toenail was splintering off, so I clipped it. His response? "THANK YOU, MOM! YOU SAVE MY LIFE!"

the art of convincing him

2011-10-06T20:02:00.000-07:00

I don't know if other children operate this way, but many children with fragile x syndrome often learn the most when they aren't looking at or even anywhere near the person talking. And when Punkin is reluctant to try something new, I often talk it up and even model it myself while he's several feet away protesting/watching a movie/eating a snack/yelling about seeing a truck outside the window that still has no curtains. So this is where I found myself on Monday afternoon -- sitting at the table, talking about how awesome it was to paint the pumpkin we bought from the store, when Punkin darted over, jumped on my lap, stole my paintbrush, and prettied it up.

buckle up!

2011-10-02T15:29:00.000-07:00

From left to right: Grandma, Mommy, and Daddy.

update

2011-09-28T20:30:00.000-07:00

So Punkin's been taking Abilify for a week now and I really can't say I'm seeing any effects except for a bit of an increased appetite, which is scary to be honest. I cannot afford those kinds of grocery bills. I have noticed that when his Ritalin wears off or when it's time for another dose, it doesn't seem as drastic of a letdown as before. One of my biggest hopes, though, is that these little hands will heal. And if you have any suggestions for how to keep him from chewing them, that would be awesome. It's not just a sensory need, it's driven by anxiety. He's given a replacement item to chew on, but it just isn't working.

wasn't i supposed to get a manual with this thing?

2011-09-19T17:09:00.000-07:00

On Friday we went to the Fragile X Clinic at the University of Iowa's Center for Development and Disabilities Clinic. To be completely honest, I was not very impressed. Not one person said the words "Fragile X" while speaking to us until 3:30pm, and our visit began at 8:00am. By 10am he had thrown his iPad twice, knocked over a desk, shoved several medical instruments off a table, and smacked me.

We saw an audiologist, an education specialist, a psychologist, an occupational therapist, and a medical doctor. (I don't know why we didn't see a speech pathologist, as that's someone I thought I agreed to meet with, but oh well.) While they were all very nice and even helpful, I wish I could have felt like we were being handled by experts. At the very least the occupational therapist should have been well-versed in hyper-arousal. And perhaps she was, but she never mentioned it to me. When I asked her about the fact that Punkin had bit most of his fingernails off, she just shrugged. "He has chew tubes, but he doesn't always like to use them." She suggested a chewy bracelet that resembled a stretchy key chain. "Ok, great." Uh, no. He will eat that.

Apparently there's trouble brewing in his right ear, but he's otherwise healthy. He was also subjected to an IQ test. The psychologist let me give him Skittles every time he answered a question, though, and was one of the most positive people I have encountered in a long time. I don't know where she gets her happy pills, but they must be good stuff. We also talked about a picture schedule for home and she gave me some very simple advice that I feel embarrassed I haven't thought of myself. She suggested getting a binder and putting a picture schedule for each day on its own page in the binder. Then it's portable and he can see what's coming up in the week. Brilliant, brilliant, brilliant.

The most dramatic event to come out of our visit was from the medical doctor, who is a fragile-x know-it-all. She suggested, like another FXS doctor did three years ago, that we try Abilify in addition to his Ritalin to manage aggression and anxiety. It scares the poop out of me to give his little body something so strong. At the same time, it scares me not to at least try. I mean, the kid put his head through a window. He hits and kicks me nearly every day. He throws chairs and tables. He's pulled my curtain rod out of the wall three times. He's chewed his fingernails off. He is sweet and he's funny and he's made amazing progress. And he has no "off" switch.

So after all of that, I decided that a trip to Auntie's was in order. We drove home, threw some clothes in a bag, and took off for the weekend. It was just what we needed to relax and reorganize. One of the highlights of the trip was visiting the children's museum.

That cup is just the right size to stop the fountain in the water room.

A play space for younger kids.

Super awesome car table.

Making a pizza pie.

This giant art room has a space for children to paint on the windows.

We HAD to check out the bathrooms! It's a supersonic hand dryer.

And my personal favorite, the Cadillac of elevators.

It was very nice going from the top picture (GET ME OUT OF THIS IQ TEST PLEASE AND THANK YOU) to the bottom picture (My red? My movie? I have a cookie?)

As for the Abilify, the doctor explained it like this: FMR-1, the protein that Punkin's body doesn't make, helps control this other really long word/chemical that I can't remember. The other chemical is like the gas pedal. Abilify is the brakes. It's been shown to be very effective in children with fragile x and children with autism. The side effects are plenty, though, so I'm putting everyone on high alert since he can't really communicate with me if there's something subtle wrong. We're going back in 6-8 weeks to check in with her and change things if needed. Here's praying for the best!

it's like that mouse and cookie book -- you end up back in the same place you started

2011-09-14T19:42:00.000-07:00

So I opened the windows this evening. Well, let me back up. We came home and it smelled like salsa. I don't know if Punkin cared, but I did. And since I'm out of those wallflower thingies from Bath and Body Works, my best option was to open the giant window. Normally I don't open the windows for fear I may inhale something too earthly and aggravate my asthma, but I really wanted some fresh air. Once I opened the window I was worried about bugs, naturally, seeing as how dirt comes right up to the window ledge. So I sprayed some all- natural bug spray, which reeks highly of lemon --not the good lemon, the chemically lemon. Then I picked up a few random pieces of Punkin's clothing, took them to his room, came back, and saw him carefully considering climbing out of the giant window -- in nothing but his underpants -- and into oncoming traffic. What about the screen you ask? Oh, that was nothing; it's "oh der." I shut the window and immediately needed to open it again because of the bug spray smell. Should have stuck with salsa.

Not thirty seconds later, Opa showed up with an item that may either save my sanity or break me entirely -- a rope. I know, right? It's my defense against him stealing my laptop power cords from the basket in the living room to use as a lasso. Of course I could hide my cords somewhere else, but I don't wanna.

wake up time!

2011-09-11T06:03:00.000-07:00

For a while there, mornings were really tough. Punkin woke up full-speed ahead and I, well, did not. I love our new routine now that he crawls into bed with me and the iPad until "EAT TIME!". Did I mention there's a Build a Train app? Because there's a Build a Train app and it's as awesome as it sounds.

it wasn't even my idea

2011-09-07T19:09:00.000-07:00

Punkin and I tagged along with Oma while she went grocery shopping on Saturday. He chose, of course, to sit in the race car cart. Do your stores have these contraptions? They are terribly difficult to maneuver through the aisles; one woman we nearly ran into (literally) told us she once took out an entire endcap with one of those things.

So anyway, he's in the cart and he finds a naked Barbie doll and a walkie talkie. He was fascinated with the Barbie for nearly an hour, but agreed to leave it with the Lost and Found at the store. When we returned to Oma and Opa's house, I dug out my old dolls and he promptly had them all go swimming before it was "Eat time!" You guys, it was awesome. Not just the play skills, the Barbie part.

He was very curious about their shoes, but overall preferred them in the nude. Can't win 'em all.

our neighbors love us

2011-09-04T04:25:00.000-07:00

You might notice two things about this picture, besides the fact that Punkin is standing on couch waiting for the blue semi to come back: he is wearing a swimming suit and the curtains are missing. The curtains left about a month ago after he ripped them out of the wall for the third time. I haven't figured out the best solution yet. And the suit? Well, that's just his uniform. The more he wears it, the better his chances of swimming, apparently.

So Friday afternoon I did my usual thing and took a shower while Punkin watched cartoons on his iPad (thank you, thank you, thank you, from the bottom of my heart for the iPad, mysterious gifter).

I took a little longer than usual, which you know led to trouble or I wouldn't mention it, but I really needed to shave my legs. For the good of man, it had to be done. So I turn the water off and I hear Punkin burst through the door, "Mom! My blanket's wet. Is wet!"

"Did you pee on your blanket?"

"Mmm Hmm." And he ran off.

Through clenched teeth, "Punkin MiddleName LastName, if you peed on that couch ...." And before I could step out of the shower enclosure, he was back. With two handfuls of poop. And not the kind that comes in one piece. Oh no. Not like the kind at the laundromat. The sticky kind.

"Okay, okay, okay. And we're dumping that in the toilet. And we're washing your hands. NO TOUCH POOP. YUCK. POOP IS YUCKY. GROSS. NO. NO TOUCH. And we're washing your hands again. And why not a third and a fourth time."

"I DONE!!"

"You will be done when I say you're done."

And once more for good measure. "Okay, you're done." We go and get new underwear and head to the living room, keep in mind that I'm still only wearing a towel, we have no curtains, and there's a stoplight outside our large window. "Now where's the poop?"

"Oh der." And he was right. It was right "oh der" on the windowsill. You guys, NONE of it was on the couch, which means he must have been mooning traffic, because I don't know how else you could accomplish that.

You know, when I was climbing into the shower before all of this happened I felt a little guilty for leaving Punkin every Friday night. But after wiping sticky, stinky poo off the windowsill and disinfecting my bathroom, I gladly looked at him and said, "You are SO someone else's problem for the next five hours."

laughter heals me

2011-08-30T03:35:00.000-07:00

Ask any parent of a child with a disability and she will tell you she is tired. Tired of poop on the floor, tired of IEPs, tired of waking up at 3am, tired of restraining their babies to keep them from harm, tired of anxiety, tired of worrying about the future, tired of arguing about food, tired of comparing them to their peers, tired of advocating, tired of meltdowns, tired of medications, just tired.

And then this happens:Mom has a ponytail. Eeyore has a tail. Punkin needs a "tonytail."

silly babies

2011-08-21T19:45:00.000-07:00

What? Of COURSE this is for me. It's adorable just like me and so suited to my sensory needs. You're such a bummer, always telling me I'm going to regret things. Let me LIVE.

I STUCK!!! I STUCK!! HELP A ME, MOM! I STUCK! PULL ME!
Maybe I'll try it again in two minutes; it might work better in two minutes.

and, he's fine

2011-08-19T04:54:00.000-07:00

Man, is he excited to see that bus in the morning. I cried the first day, but it was mostly a happy cry. The first week went well. *sigh*

kids, they're all the same in the end

2011-08-14T20:07:00.000-07:00

I have to admit that every time I thought about this summer last year, I panicked inside. And maybe a little on the outside, too. (Sorry, Oma, for all the grumpies.) Where would he go? What if it was awful? I want him to make friends, have structure, be happy. WHAT WILL I DO???!!!

Well, I have to give my mom props for advocating to me and to the summer program at her school to allow Punkin to attend. All day? Check! Fun? Check! Affordable? Check! For children with special needs? Not so much a check. But, we all agreed to give it a try, and even though he pulled the fire alarm his first day (and during his second to last week) and succumbed to a few meltdowns, I just couldn't have imagined how much my little man would flourish over a few months.

My sweet Punkin has become Little Mr. Independent. When Oma showed up to help with a field trip, he actually told her "No, stay here" and walked over to stand with his friends. His friends! Those sweet boys - if they only knew how much they influenced a life simply through kindness.

And now? Now it all has to end, of course. The school district, in its wisdom, has transferred me to another building. So tomorrow morning, my Little Independent boards the bus for school. He's repeating kindergarten, which I think will be good for him. He'll be able to integrate more this year and really catch that social piece that was missing last year. But we're both nervous- so much so that the first three times I mentioned school, he smacked me. And at Unpack Your Backpack, he bit me.

"I know it is scary to be back at school."

"Scawey. I scawey."

"It will be okay."

"Okay, mom. I sowwy,, Mom."

So the panic began again, "Will he lose everything he's gained?"

And then I calmed down; it will be okay. We talked about it. A lot. And today when I asked him if he was ready to ride the bus, he answered with a resounding, "Yes!"

"Ready for bus to take you to school?"

"NO SCHOOL!"

"Well, where should the bus take you?"

"GO SWIMMING!"

turn down the volume

2011-08-10T18:58:00.000-07:00

No, really. He's learned how to play the recorder.

the difference a year makes

2011-08-07T14:54:00.000-07:00

It's my birthday tomorrow. I'm turning 29, which feels slightly unreal. Most days it seems as though I just left college, even though life has changed dramatically since those days. Well, not too dramatically, I suppose. Oma and Opa bought our groceries on Thursday and Punkin's new backpack today. :)

My sister visited Thursday as well, and much to Punkin's delight we went swimming immediately after summer school. She noted that if all you needed to do for swimming lessons was learn how to jump in the pool, he would pass with flying colors. I informed her that in fact he DID pass swimming lessons, as a Pollywog, for that very reason. His occupational therapist is thrilled with his new skill; she said jumping in the pool ten times should give him enough deep pressure to last the afternoon, and I have to agree that he is calmer on days we swim.

I think this year I'm more focused on Punkin's maturity and overall development than my turning a year older. When we were at the pool today, for example, two boys his age came and he went up to the younger one and said, "Swim mi me?" Once I translated that he wanted to play with him, the two played just like any two little boys would. Punkin was fairly bossy, but he also said thank you and offered to hold the boy's hand. And the other child didn't seem to mind. They just climbed in and out of the pool, throwing plastic fish in the water and jumping in to catch them. They continued for 10 minutes until I said it was time to leave.

That was a pretty sweet birthday present, as were the four bottles of Naked Juice in my fridge on Friday when my sister left. Yum.

it's complicated

2011-07-30T15:30:00.000-07:00

Two completely unrelated things happened today which are worth noting. Punkin likes to talk about "dad" and even calls respite workers, summer school employees, and perfect strangers "daddy" with a great deal of enthusiasm. This is not embarrassing in the least. I'm sure he's picked up the word from seeing other children with their fathers at school and from seeing father figures on television, most recently on Word Girl.

I've been trying to figure out the best way to approach this subject, as he doesn't have any relationship with his father at all; therefore the concept of what a dad is and what a dad does is difficult to explain, especially to someone with limited comprehension skills. Do I just keep saying, "No, he's not your dad; he's so-and-so" and leave him wondering "Well, then who is dad?" And then if I talk about him more often, is he left secretly wondering where the heck this guy is and when he's coming over to play? Bottom line, I don't want to leave him hurting. And then, of course, maybe I'm just projecting my own feelings onto the situation; maybe Punkin doesn't give a hoot.

So this morning he's playing with some paper kites that he made at summer school with one of the most patient young women I have ever met in my short life and he says, "Where's the dad?" We found the dad kite; I grabbed his baby book off the shelf and sat down, "Here's Punkin's dad. Here's your dad. This is Dad."

"Ya. Dad." He smiled.

"Ready to go?"

"Let's get outta here."

So we went to an outdoor festival in the city to watch some friends play in their band, which brings me to the second even worth mentioning. He saw an older friend go dance and wanted to join him. So I got up.

"Sit down!"

"Honey, I have to come." I walked a few paces.

"Stay right der!"

"I will just watch."

He practically ran away from me, stood and twirled in front of the stage, and then noticed the growing line of people grabbing each other's backs to form a train. He hopped right in -- with mom. When we joined Oma after the song his first words were, "I DID IT!"

people? who needs people?

2011-07-25T17:03:00.000-07:00

I'm unsure of Red and Brown's final destination, but I can assure you that their safety belts are properly fastened.

is there enough soap for this?

2011-07-17T19:31:00.000-07:00

I'm writing this particular post for a friend from college who once surprised me by telling me that he read my blog and then requested more poop stories. It's been a while, but I think this one should satisfy.

I generally go to the laundromat during my respite hours, something my therapist hates because I should be out having fun and being youthful or some such thing. But it's sort of peaceful there. And they have free wifi.

Anyway, last Thursday Punkin was forced to come with me, which normally would have scared me. But since he's started that third dose of ritalin in the afternoon, I knew there wouldn't be any threat of climbing in the machines. He was awesome. He sat and watched Word Girl in such peace that I almost missed him squatting on the bench. "Punkin! Let's go potty."

"No potty."

"Yes potty. Let's go." At this point I knew we were racing the clock and I was left wondering which kind of spill I'd be left cleaning up if we lost. We rounded the corner past the last row of 60lb washing machines when I saw it, plop, right there on the floor -- a Punkin turd, rabbit sized.

Inside my head I was saying, OKAY, OKAY, We're almost to the bathroom. It's solid. It's small. No one can see, right? ARE YOU SERIOUSLY DOING THIS TO ME RIGHT NOW? And on the outside I just bent down and picked it up with the pair of swim trunks I had thought to grab out of the basket and kept walking. Oh, good gravy it's another one. Oh dear. Okay. Two more steps. They just keep getting bigger. Why does this stuff happen to me? They're just falling out of his underwear. This stuff doesn't happen to other people. There's the door. Of course a guy is sitting right there. "Go in, honey. No, Punkin. No, honey. Don't pick that up." Please don't put it in your mouth. Please don't put it in your mouth.

So now I'm stuck because the trunks are dirty and so are the shorts he's wearing -- and I have no underwear. To save both of us from a meltdown, he wore the trunks for approximately 25 seconds while I found a new pair of slightly damp pants and underwear in the dryer. And I was full on sweating.

As we walked out of the bathroom for the second time I realized two things; first, I missed a turd and second, the premise is under video surveillance.

just wanted to let you know

2011-07-13T18:13:00.000-07:00

That I think you're amazing.

Every day you get up and you do it - you face the world - all over again. You deal with people who despite their most sincere intentions do not understand you. Hell, even I misunderstand you and I'm the mom. You fight through dozens of sensory hailstorms being thrown your way and are unable to articulate your thoughts and feelings. And yet you still manage to be the happiest, funniest, and most affectionate person I know.

Life sucks sometimes, huh? It's hard. I sure am glad you're here to help me through it.

I love you.

this is why i carry my camera in my purse

2011-07-10T18:55:00.000-07:00

"Ge a baby. Ge a biaper."

"Ge a biaper on."

"Good as new."

"Wan a drink. Drink, Baby."

"Night, Baby. Bye, Baby."

I didn't prompt him at all -- not even to play with the doll.

our fourth of july weekend

2011-07-08T04:58:00.000-07:00

We used sparklers, which was a little intense for me to be honest. It worked out, though. Nobody was rushed to the emergency room.
Then my parents, Punkin, and I met my sister at an indoor waterpark. Before we went swimming, though, we had to honor our family tradition by attending a Revolutionary War camp. Hence the obligatory photo in front of an old log house.
And then we swam! Here's Punkin practicing his Winnie the Pooh song, "Up down/Touch the ground/In the mood/for food." I was very impressed by his willingness to play among the sprinklers. It took a lot of convincing, and ultimately I think he agreed to it because of the promise of a super awesome water slide at the end. Because let me tell you, it was as if the entire structure surrounding the slide was raining on us. The faces he made were priceless.

about that ritalin

2011-06-27T20:55:00.000-07:00

You have to make sure he actually gets it.

Punkin sat on the bleachers at the baseball game of the local minor league team, clapping and encouraging the players to "run!" as they made their way into the outfield to catch fly balls. He was by all accounts appropriate, calm, and mild-mannered; he even cuddled with my mom. Looking at him, no one would think that 40 minutes earlier he had put his head through the window in my parents' back door during a fit of rage.

Every summer we attend a baseball game and every summer I wonder why we attend a baseball game. This year I was hopeful that the third dose of Ritalin would help us all keep our sanity and be able to stay beyond the first inning.

As we muddled through dinner at Oma's before the game, trying to convince Punkin to finish his taco so he could have some much-desired strawberries, I wondered aloud to my mother about the possibility that he spit out his 3pm medication. When he threw his plate across the dining room, I said, "Ya, I'll go check the car for his pill when I'm done." I was sweeping up taco meat when he asked to go outside. "No, not right now. We will play outside later." This went on for several minutes, quite playfully, until he snapped.

"NO LATER!" And before I could stop him, he banged his head against the glass of the back door hard enough that it shattered. The panic I felt was less than the day he grabbed three of my mother's knives by the blade from her knife block and started running around the kitchen, but was slightly more than the day he ran out of the apartment and into the parking lot to fetch something from the car.

Now, Punkin is rather unpredictable sometimes. There are, however, a few surefire ways to send him over the edge. One of those ways is when something breaks. This is ironic, of course, because generally he is the one who does the breaking. So he was scared, sorry, and something was broken and could not be immediately repaired. And since he didn't know how to cope with any of his emotions, he became aggressive. Very aggressive. Which meant I had to restrain him before he broke something else. All the while I'm thinking, "Wow, this opens up an entire new list of things for me to worry about."

"I SORRY. A DOOR BROKEN. IS BROKEN. A FIX IT."

"I forgive you. Opa will fix the door. Let's calm down. No cry. No hit. It's okay."

"A DOOR'S BROKEN! I so sorry, Opa. Opa fixa da door. DOOR'S BROKEN!"

Oma called Opa, who reassured Punkin that he forgave him and would fix the door, but the kicking and the screaming the hitting continued for another five minutes until Oma looked at me and said, "Should we offer him some strawberries now or is that against our principles?"

"Forget principles," I whispered, "Do you have any Skittles?" And just like that, he stopped. Oma didn't have Skittles, but she had a popsicle. We calmed down outside, I found his pill from the afternoon under his booster seat and gave it to him, and he only yelled, "DOOR'S BROKEN!" about ten more times on the way to the game.

The game, by the way, where he behaved beautifully.

best idea ever

2011-06-22T04:44:00.000-07:00

When I was pregnant with Punkin, it became apparent that I needed to be retested for fragile x. I had been tested in high school, but a better test was available and we had doubted the results since they arrived. When the more accurate test came back positive, the need to find a pediatrician became much more pressing, and the requirements moved from "must be nice and listen to my concerns" to "must know something about fragile x, can't be mean."

After asking around, I called a popular pediatric group and asked if anyone fit the bill. (I didn't include the part about being mean.) It turns out that there was a doctor there who not only knew more about fragile x than its name, but had other patients with the disability and had recently attended a conference on the syndrome.

When we went to see him a few weeks ago, I was reminded of how lucky we are to have him in our lives. He recently moved to his own practice, and Punkin flat-out refused to go in the exam room painted with a jungle scene. He motioned towards the other room, they obliged, and he happily sat and tore paper in the ABC room instead.

It was a routine med check for his ADHD, and even though he really only needed to speak to me, he made sure to greet Punkin first, ask him questions, and praise him for good behavior. My main concern was not Punkin's dose of Ritalin, rather it was the time before and after I was able to administer it. He understood immediately and came up with a solution that only increased his dose 5mg for the entire day. He also understands that he isn't an expert on fragile x and recommended that we see the team at our local University in the fall.

For now he takes the meds three times a day, which means I can give it to him when he wakes up at 5:30am, rather than waiting two hours, before he dumps cereal all over the carpet or breaks my curtains and a meltdown ensues.

I mention all of this because something fairly remarkable happened tonight at dinner. Before this medication change, we had an issue. I made ham for dinner. Punkin likes ham, but he wanted Skittles and Frosted Flakes. He threw his plate, he screamed, he cried, and he dumped his milk out on the table.

"You can eat or you can go to bed."

"Watch a movie."

"Eat or bed."

"Skittles."

"Eat this or go to bed."

"NO THIS!!"

So I took him to bed. And after 10 minutes he was calm enough to come out, pick up his plate, eat the five bites of ham, and be done.

Tonight I could see in his face that he didn't want chicken alfredo. He doesn't hate alfredo, he would just rather eat cereal all day. But he ate the five bites I put on his plate, tried a green bean, and announced, "I DID IT!"

I love meds three times a day.

it's the pits

2011-06-20T13:27:00.000-07:00

I found this old picture of Punkin in the ball pit at his occupational therapist's office and it made me first smile and second think, "Wow. We're getting old."

bragging rights

2011-06-14T18:19:00.000-07:00

Every night - and I really mean every night, I'm not just exaggerating like usual - Punkin yells, "Mom! Look a me!" I go in his room and he's shoved his pillow and blankets on the floor, "A mess!" Tonight, before he did that, he walked out completely dressed, and asked me to tie his shoes. I assume he either wanted to go to his summer school since earlier he found his t-shirt from them and asked, "Go see kids?" or he wanted to head to the store to pick up some Skittles because we are FRESH OUT.

He loves his summer program, and I hope he can continue to attend. Right now they are feeling like they need another staff member in order to support him, and obviously they can't just pull that money out of thin air. He's doing remarkably well, though, from what I understand.

He's not having meltdowns, he hasn't wet his pants since the second day, and he's only hit another individual (staff and students) three times. I'm impressed, and I'm thrilled that he's had time to spend with typically developing, same-aged peers.

Oh, and apparently at some point this school year he learned how to draw airplanes:
(It's that thing in the bottom right corner that looks like a fish with spikes. )

i got ya

2011-06-13T16:38:00.000-07:00

Just in case it rains, I'm totally ready to protect us both with my busted up, miniature umbrella. I like water, but I do not like it when it falls from the sky. And I especially do not like it when water falling from the sky combines with wind to make . . . SIDEWAYS RAIN.

there's a race car app for that

2011-06-07T07:55:00.000-07:00

AND it makes sweet engine revving noises.

Now, do you suppose there's an app for teaching kids not to pull fire alarms? Because he sure did pull one on his first day of summer school this morning. You know, the one they're letting him try out because there's no other special needs kids enrolled. Ya, that one.

iMazing

2011-06-03T20:01:00.000-07:00

The kindness of the people in my life will never cease to astound me. I have been knocked off my feet a few times by the generosity of my family and am always grateful for their unconditional love and support. Today I was reminded that my support network moves even beyond that.

My job is not glamorous and it does not really pay much. All of the para educators agree that the health benefits and the people make up for the paycheck, though. And we mean it, especially the part about the people. Our school has developed a nice little family that wouldn't be easy for me to leave. Perhaps that's why I've hung onto changing diapers, redirecting problem behavior, and spoon feeding for seven years.

So back to today. This morning my principal called me into his office. A large gift bag sat on his desk, "This was on my desk when I got here. I don't know where it came from, but it's for you."

I took it back to my room and of course immediately opened it. The first package revealed a protective case. And that's when I started getting that surreal feeling and tearing up. I opened the next one and sure enough a brand new iPad sat in my hands.

I went back to the office and told the secretary, who had also been there when the principal gave me the bag, "I have to hug somebody!"

Everyone claims they don't know where it came from, so all I can say is thank you to the internet. I promise to post a picture of Punkin with it very soon. I downloaded the letters app as soon as we got home today and he told me, "Go way. Go o' der." He didn't need my help, and he was very proud. God is good.

read again, mom

2011-06-02T18:25:00.000-07:00

I find it incredibly fitting that one of the few books Punkin enjoys listening to, and is his current favorite, uses the word "no" 8 times (not including the title), has 18 exclamation points, a boy running naked away from his mother

and more tape than Christmas morning.

After we taped the bottom halves of the last two pages back on, taped the inside binding, and added some reinforcement to a weak spot near his left arm, Punkin asked if he could sleep with the tape. "Uh, no. Not really the point of having you help me."

(The book? No, David! by David Shannon.)

luckily i was anticipating such an act

2011-06-01T19:36:00.000-07:00

I clearly did not write my rules post on a Wednesday, the day we go swimming for occupational therapy, because I forgot one of the most important rules of all time: Punkin wears underpants at all times unless we have company, in which case he may jump, naked, on the furniture at any moment.

He wears underwear when he goes swimming -- he always has. It's fine with me. The problem is remembering to bring an extra pair to change into after we're done. So if you haven't guessed yet, I forgot today. I also forgot to give him his 3pm Ritalin. So that was fun.

"MY NUNNERWEAR! I FINE MY NUNNERWEAR!"

"Punkin, I understand that you have no concept of time, but I assure that you will have new underwear in approximately 10 minutes. It will be okay." And that's when we walked to the elevator and he dropped his drawers.

puppy love

2011-05-28T04:05:00.000-07:00

Punkin has a girl in his class who was also in preschool with him, so they've known each other for several years. They tend to fight like siblings. For example, in preschool he gave us a dirty look when she sat on my lap during the before school program and then later, when we all gathered on the carpet, he smacked her out of spite. This year they've had moments of doting on one another; his former aid walked in once and saw them laying on bean bag chairs, sharing his blanket, her stroking his hair. (They were watching TV Teacher videos, FYI, not taking a siesta.)

So anyway, I was talking to his teacher yesterday when I picked him up from school and he and his friend were sharing a computer. Punkin had his arm around her and his teacher was starting to say something about next year when Punkin looked at his friend, "Kiss?" She turned her head to him, they kissed, and then went back to playing their game.

"Ya, that started a few days ago. Punkin, no kissing. One day she doesn't want anything to do with him, the next they're doing this."

His aid made a comment about grandchildren, and I told her I have enough problems. I am glad he has a friend. And if he'd like to kiss her when he's a little older, that's fine, but right now we may have to make up a social story for school and kissing. "I give my friends hugs and high fives. I always ask before I touch a friend. I can kiss my mom." Awesome.

when it's right in front of your face

2011-05-16T18:36:00.000-07:00

So I'm vacuuming today, thinking about how awesome it is that Punkin asked for Frosted Flakes, flipped out and dumped them in the sink, asked for popcorn, and then flipped out again and threw it, confetti-style, all over the living room for the second time this week when I make one of the single most important realizations of my adult life.

But first let me remind you of something.

I wrote on in March of 2010, "The most confusing part is that when he's shaking the strips of paper in front of his face and barking, and I ask him what the papers are, 8 out of 10 times he says, 'shark.'"

Anyway, I can hear Curious George playing in the background as I vacuum. In the new episodes George lives both in the city and the country. When he's in the city, he hangs out with two kids who have a very energetic dog. As I'm cleaning, it occurs to me, "Since we've been watching George again he's been barking more. I wonder if that's where he got it in the first place. I mean, we've been watching George for a long time. Huh. And that dog Sharkie sure does bark .... SHARKIE. He's a dog. Named Sharkie. I'm an idiot."

Related

some people's kids

2011-05-14T07:51:00.000-07:00

On Wednesday night before bed, after Punkin and I finished playing "letters" and reading "Peg the Hen" 26 times, he asked for the red parachute. Since to the best of my knowledge we don't own a parachute, I asked him to show me.

He ran out to the laundry basket and grabbed a red fitted sheet for his bed. "That does look like a parachute. It's called a sheet." He dragged it to his room and asked me to put it on his bed. Since I had just changed his sheets the day before, I said, "No, not today. We'll keep blue on."

"NO! Red!"

"Not today."

"NOT ODAY!" He then flopped on the floor, I wrestled him into his pajamas, and kissed him goodnight.

A few minutes later I heard, "MOM! MOM! WHAT HAPPENED?! WHAT HAVE YOU DONE?"

"What, Punkin?"

"What happened, Mom? Wook!" He stood, completely nude, on his bed, right arm outstretched to navigate me towards the offending wet spot.

"You peed on your bed. You peed on your bed to get red sheets."

"OH NO! WHAT HAVE YOU DONE?! A MESS!" So, naturally, I took the sheets off, went to the closet, and got out some beautiful flowered sheets. He argued, "No, red. Red, Mommy."

"Nope. Not today."

that look? it's an impending sugar high

2011-05-10T19:31:00.000-07:00

Punkin talks about ice cream a lot, but he hasn't really eaten it since he was about two years old when he was coming down from being sedated after an MRI. It was one of those "too intoxicated to care" situations, not unlike the time I ate a sandwich with Thousand Island dressing on it and gushed about how it was the most amazing taste sensation I had ever experienced in my 21 years.

Anyway, ice cream. Today, after I bought him a bag of Skittles (aka jellybeans) , I treated myself to an Oreo shake. He insisted on a chocolate cone for himself. "Brown." I bought him one with little hope he would eat it and to my surprise he ate it right away -- and stole mine!

cartoon meets real life

2011-05-09T08:00:00.000-07:00

Punkin took one look at this at the park on Saturday and yelled, "BEHOLD!"

"Yes, Punkin. it does look like one of Doofenschmirtz's innators. It totally does."

rules to live by

2011-05-08T12:11:00.000-07:00

We don't have many rules in our house. Well, I don't have many rules in our house: don't dig in the garbage, don't sit on the glass coffee table, don't pull on the curtains, only eat one small bowl of jelly beans at a time, don't go outside without an adult, no barking, and Number 1 and Number 2 go in the potty if at all possible please.

Punkin, on the other hand, has many, many rules and is becoming increasingly rigid. Here are the most pressing rules as of late:

1. The lights are to be off at all times unless he deems it suitable for one -- and only one -- lamp to be turned on for a brief period of time. I have yet to figure out when these times are, but he will let you know if it isn't okay.

2. The curtains must be closed. Yes, we live like hobbits.

3. All bedding is to be arranged in a certain order and with a certain side facing up. Didn't guess it right? He'll let you know. "DIS WAY!" Puppies and sharks are to be dutifully tucked in alongside him.

4. He needs a drink of water before bed. You gave him one already in anticipation of this need? Well, he needs one again, and make it snappy or the curtains are going bye-bye.

5. The doors must be shut at all times. Will a character from Monsters Inc pop out? Will the heat or air conditioning system become too efficient? I don't know. Only he does.

6. Additionally, it may appear to all other diners that his supply of ketchup, mayo, mustard, or salsa is satisfactory, but it is in fact depleted. If the plate is visible, he needs a refill ASAP pleaseandthankyou. You don't want to refill it? Well then he is done eating.

7. The remote has a home. Put it there. The end. (This is actually helpful to me as I have not lost the remote once in the last month.)

8. One straw is not sufficient. Three is satisfactory. Ten or more is preferred. They make awesome toys.

9. If there's a computer, it'd better be open to Starfall so he can do "letters."

10. Everything is better in pairs.

all kid all the time

2011-05-07T19:46:00.000-07:00

I can't be the only one who lets my kid play in the dirt with a ketchup-stained face and torn jeans. I mean, the straws had to go night-night somewhere. And no, we could not be bothered to clean up first. This was very pressing business.

because i'm that cool

2011-04-30T13:10:00.000-07:00

my shark! my blue!

2011-04-25T16:51:00.001-07:00

Before I go any further, I would just like to let you all know that the giant bowl of jelly beans on Easter Sunday was, in fact, as amazing as we all thought it would be. He had to work for it, though. I hid plastic eggs in plain sight all over the apartment and he was forced to trouble himself with opening each of them to discover the candy inside. It was twice as sweet because we RAN OUT of jelly beans for a WHOLE DAY before Easter and he really thought the world might end because of it.

Anyway, on to the real point of this post. Remember that time I embarrassed myself posting this picture? Well, Punkin has a thing for tearing paper and plastic bags. And he has a thing for long, skinny objects. So after nearly a month of dragging two bathrobe ties around as pets, forcing me to kiss them before bed, wash them when they got dirty, and pick them up from the tiny space between his bed and the wall 15,000 times, he discovered that his could be shredded.

To him it's the same old "shark," even when it sheds and scares the crap out of me when I think there's giant bugs on the floor.

happy easter!

2011-04-24T19:04:00.000-07:00

from our house to yours.

spin!

2011-04-21T20:28:00.000-07:00

For the past few months, Punkin has been increasingly interested in spinning. He's always been preoccupied with spinning objects such as balls and wheels, but this involves his entire body. Now, I know as parents of autistic or special needs kiddos, we would normally discourage this behavior, but it seems to calm him when he's assisted by an adult (ie: not holding a strip of a plastic bag).

I was picking him up, spinning him around, crashing him onto the bed, and repeating until my back broke in anger. And while this is still our preferred method because it's the most fun, the spin board we're borrowing from the occupational therapy center is pretty sweet. I wish it were a little bigger, actually, but it works for now. It's accomplishing some of the same things a swing would do without any property damage.

If you're interested in one, email me (theotherlion(at)gmail.com). They can be very expensive, but there's a local company that makes them cheaper (swings, too).

wishful thinking

2011-04-18T08:00:00.000-07:00

Punkin's going to be so excited on Easter when he actually DOES receive an entire bowl of jelly beans first thing in the morning. As for today, it didn't fly. Nice try, buddy.

view from the love seat

2011-04-16T16:05:00.000-07:00

The other day my friend said my apartment was cozy, and I was so happy because that's exactly what I'm going for over here. This picture doesn't quite convey the green in the curtains, which makes me worry about the color scheme being to "Christmas is Coming," but I just go through phases where I can't stand messing with slipcovers for one more second. Not one more! Eventually I'd like an area rug to tie it all together and help it make sense, and also to protect the carpet from my walking stain bomb. For now, though, my carpet cleaner is serving me well.

fyi

2011-04-09T18:39:00.000-07:00

These guys are Phineas and Ferb. They build rollercoasters, beaches, airplanes, and time machines in their backyard. It really bothers their sister Candace, who is unfortunately not pictured here.

This is Dr. Doofenschmirtz. He is EVIL. He likes to build inators, and this is one. Smellinators, shrinkinators, etc. He wants to take over the tri-state area.

This is Dr. Doofenschmirtz fighting Perry the Platypus, aka Agent P, who is also the pet of Phineas and Ferb. They have no idea that he is a secret agent.

All day I heard "BEHOLD! INATOR! CURSE YOU PERRY THE PLATYPUS!"

Toys are a tricky thing in our house. Punkin befriends objects, usually pairs of them, for days at a time and then either destroys them during a non-medicated time or loses interest suddenly. Action figures are the one type of toy he consistently plays with in an appropriate way, besides cars. I think it's because he can reenact scenes from the shows, down to specific lines such as this one, "Oh, hello Perry the Platypus, would you like a sandwich?"

questions

2011-04-09T17:51:00.000-07:00

My cousin sent me these questions for a project at school and I found them very interesting. I thought I'd post my answers here.

What has been the greatest challenge/ hardship with raising Punkin?

I honestly don’t know if I’ve met that challenge yet. I think the future scares me much more than the present. That said, other people have been our biggest challenge thus far. We don’t fit into their world and they often don’t fit easily into ours. We are the recipients of a lot of unsolicited advice, mean looks, and snarky comments. And I am constantly trying to balance meeting Punkin’s needs and allowing him the freedom to be a child with the responsibility to respect the people in our community. For example, going out to eat, living in an apartment building, grocery shopping, flying on an airplane, and attending a play have been some memorable challenges. Some of them we have only attempted once. All of those things are stressors on Punkin's sensory system and beyond his ability to handle socially; but they are also things Punkin loves to do and needs to learn how to participate in appropriately.

What do you do to relieve stress?

Sometimes I do silly things like play Facebook games. It’s nice to be able to sit and do nothing at the end of the day – to not be required to think very hard or to be able to do a simple task involving organizing or cleaning, even if it’s in a virtual world. I also really enjoy talking to other parents through blogs. We laugh, cry, yell at insurance companies together, and brainstorm methods of calming our children’s wily sensory systems.

Has your faith played a role in raising Punkin? If so, how?

I am a Christian. I would fall apart without my faith. I honestly don’t know how parents manage without it. style=""> I trust that God will provide for us and take care of us, and it is a tremendous relief.

What are your fears for Punkin in the future?

I worry that I haven’t prepared well enough for him and that he won’t be cared for well enough. I worry that people will be mean to him or that he will be neglected.

What is Punkin’s favorite food?

His favorite food used to be hot dogs. Then for a time it was chips and salsa con queso. Lately it’s been watermelon, which is rather pricey considering the time of year. He generally loves fruit, though, and salad with ranch dressing. And he’s always game for pizza.

Describe Punkin’s condition and how he is affected.

Punkin has Fragile X Syndrome. It is a genetic condition that is passed down on the x chromosome. It can be passed down from either parent. There is a gene on Punkin’s x chromosome that has mutated to the point that it has shut off completely. That means that it doesn’t produce the protein it is supposed to for Punkin’s overall development. In his case it has caused moderate mental retardation, autistic behaviors (but not autism), ADHD, sensory integration disorder, and speech delay. He also has a sleep disorder that has not been specified more than “sleep disorder” and acid reflux. Fragile X is a spectrum disorder, which means that people are affected in all kinds of ways, from mild to severe. Punkin is fairly typical of a boy with Fragile X.

How do you calm Punkin down?

How I calm Punkin depends on where we are and why he is upset. If he is fixated on something and unable to move past it, then a lot of times I will tickle him and talk to him in a funny voice. If he is aggressive or self-abusive, I may put him on his bed and let him throw his stuffed animals until he calms down. Many times he wants to lay upside down on my lap and watch a movie. He calls it jumping.

Do you ever get tired of being constantly surrounded by special needs kids? (I work with special needs preschoolers.)

I get tired. I don’t get tired of special needs kids. I forget that not all kids are like them, though. When I run into a typically developing child, they blow me away with their language and self-help skills.

Does Punkin have a favorite book and movie?

His favorite book right now is The Very Hungry Caterpillar. He can recite much of it. His favorite movie right now (it changes every few weeks) is Despicable Me. He has an amazing sense of humor. He belly laughs every time Vector shrinks the toilet.

Why did you start writing your blog?

I started writing my blog because I needed an outlet for my creative thoughts and because I admired other parents who wrote blogs and wanted to be a part of their community. It’s become more than I thought it would be – I’ve met people from all over the world and we’ve helped each other through this struggle.

Is it easy to maintain friendships when you have Punkin?

It’s harder than it was before Punkin because I can’t be spontaneous. I can’t just call someone up and go out for dinner or meet someone for ice cream at the last minute. I think any parent would feel that way, but being a single parent makes it extra difficult. I don’t think his disability makes it more difficult because I have good friends who don’t shy away from challenges or differences. Many of them work with special needs children themselves. Many parents are not in the same situation I am in and their friends don’t know how to react to their children and it puts a strain on their relationships. Some parents have children with weakened immune systems and are isolated because of that. In my case, I think that if I don’t maintain friendships, it’s because I am not making myself a priority. I tend to always make David the priority.

Will you consider dating anyone?

Yes, but he needs to be a Christian and he needs to understand that if we have children, they will either be adopted or we will run a 50% chance of having more children with Fragile X. That’s a lot for someone to accept.

How important is family?

Our family helps support us in our daily life. It is extremely important.

Do you feel that Punkin is judged by his peers?

Yes, definitely. Many of them are very kind. They still know he’s different and they still giggle at him when he does inappropriate things, but they are generally kind from what I can gather. Most children want to be helpful.

What were some of Punkin’s struggles as an infant.

Punkin struggled first with nursing, then some with bottle-feeding as well. He just had trouble because of his weak facial muscles. Once we got those things sorted out, he had trouble sitting up and crawling. He crawled at age 13 months and walked at 16 months. He gagged a lot and was eventually diagnosed with acid reflux.

How did you find out you were going to have a special needs child?

I was tested in high school to see if I was a carrier of Fragile X and the test said I was not a carrier. However, the paperwork we received was a little “off,” so when I became pregnant I pushed for a retest. It took a while, but I finally was tested at 6 months and found out that had a full mutation of fragile x syndrome and a 50% chance of having a child with the same condition. I think God was preparing me for the news, because I wasn’t really surprised when a month after Punkin was born his doctor called to say his test was positive. Having that time to know what might happen was helpful for me. And knowing from the first month is very rare. I’ve had a lot of time to adapt my expectations, mourn the loss of the “typical” child, and learn how to be the best mom I need to be to Punkin.

Does Punkin have any friends?

Punkin had one very good friend in preschool. They would chase each other around at recess. It was pretty funny. He has one friend his age now. She has Downs Syndrome and they fight like siblings. He had some other friends in preschool who were typically developing, one in particular who was a good helper. He would hold his hand and convince him to do scary things or ask him to please share when he was kind of impatient with all of the other children.

He has other friends, though, who are adults --the janitor at school, for one, and some of my friends who he considers his friends.

What hopes do you have for Punkin in the future?

I hope that he is happy and well protected. I also hope that he can ask for help and other things he needs when necessary and that he has fun. I hope he’s happy.

How do you and Punkin have fun?

We spin around the room really fast and then I throw him on the bed and tickle him and kiss his face.

We also like to go to the children’s museum or out to Culvers. He really likes cheese balls. We’ve also been known to watch SpongeBob all day on Saturday.

it hit 60 degrees!

2011-04-02T20:13:00.000-07:00

works in progress

2011-04-02T10:54:00.000-07:00

Normally I would never place a rug around my toilet (eww), but given someone's boy-ness I felt it was necessary. At least I can put it in the wash.

just for fun

2011-04-01T07:09:00.000-07:00

Because I can't rationalize spending the money on an area rug right now, I'll just post pictures of pretties I found online:

pirates in the morning

2011-03-27T19:07:00.000-07:00

Punkin has been very interested in pirates lately. The other day he took a strip of plastic bag (that he had shredded) and wrapped it around his head, "PIRATE! ARGH!" This morning I went to get him a piece of cloth for a headband, but the only thing I could find was the ties to our bathrobes. Eh, it works. Now for an eye patch.

because i know you've been waiting

2011-03-26T15:52:00.000-07:00

This is my new kitchen. It's definitely tiny, but I like it. The appliances are an upgrade and the dining area is big. I think having a small space will force me to keep it very clean. I'll post more photos when I have art on the walls. Oh, and there's children upstairs -- children who run. :)

i won't even mention the pee on the floor

2011-03-26T08:03:00.000-07:00

Some days are better than others. Yesterday started out awesome. We had a nacho luncheon at work, which is exactly what it sounds like; everyone brought an ingredient for nachos and we stuffed our faces. It rocked.

Then on the way home the cable guy called and asked if he could come EARLY to install cable and internet. Um, YES. So I get home and he's there tinkering around outside. Then he comes in and tinkers around inside for a while. There's a minor issue that he has to call in about, but he makes sure the internet is working and leaves.

Then I realize he never checked to make sure the cable was working, so I turned on the TV and, I know you're shocked, but all I got was fuzz. WAH. So I looked behind the TV and he never actually hooked up the cable from the wall to the television. And since the cable ran from the wall to my modem, I couldn't hook it up to the TV. There are two cable outlets and I have an extra cable wire, so I checked the other one, but sure enough it didn't work.

So I'm on the phone with the cable company and Punkin decides to flip out about something, probably food related, and the woman thinks I'm an idiot. I tell her that the guy never hooked up the cable to my television, he only hooked it up from the wall to my modem and she of course asks, "Well, did he leave any cable behind?"

"No, but I do have some."

"Is there a place on the back of your TV to plug it in?"

Of course now is when Punkin starts banging in frustration on the wall. "Of course there is, but I can't plug the cable in to my TV because the cable wire is going to my modem. I would have to unplug my modem."

"Well, I'm not asking you to do that."

I take Punkin to his room and he begins screaming. "In my other apartment, I think I had a splitter for the cable wire so part of it went to the TV and part of it went to my modem."

"Can you check the other outlets?"

"The other outlets?" At this point I have no idea why she is asking me to check the other outlets, as Punkin is yelling, "I BROKE IT! IS BROKEN!" and I can't concentrate on the woman on the phone who thinks I'm an idiot. I walk into his room to see the curtain rod dangling from the wall, bent to the point of being unusable, and his face covered in tears.

"Maybe there was just some misunderstanding and that's why those other outlets weren't activated."

"No. My main TV is not hooked up. It's not the additional outlets. It's my main TV."

"If you would just check those other outlets for me because sometimes they are left there but aren't activated."

I am literally carrying my small TV from my room to Punkin's room, plugging it in, and plugging in the cable cord. "There are four other outlets."

"Four?"

"Yes. This one works. It's my main TV." Somehow I get us back on track and I tell her again that the cable is running from the wall to the modem, but not to my television. "There's another cable outlet here next to the other one but it doesn't work. There is currently no way to run the cable from the wall to my TV without unplugging my modem."

"The other one doesn't work."

"No."

"Ok. So you need a splitter."

"Yes."

"Okay, I will send someone out but it may not be until Tuesday from 8-10am."

"Awesome."

So I hang up and rush to hang the curtains from my room in Punkin's room, get a pizza in the oven, and take a shower before respite arrives. And then I feed Punkin the pizza. And then I clean up the pizza. And then I decide to double-check the schedule and, yes, the worker was to arrive a half an hour earlier. I call the respite agency and the woman there cannot reach the worker who is supposed to be at my house. She said she would try to send someone else, but most likely would not be able to find anyone. So much for a girls' night out that I've been planning for a month. WAH.

I try unplugging the cable from the modem and plugging it into the television so that we can watch cartoons, but the picture is terrible. Looks like there's going to be a bigger issue than a splitter. WAH.

So I eat some pizza and call my dad to whine. He brings me beer and after entertaining Punkin, which may have saved Punkin's life and me some jail time, we put Punkin to bed and watch Napoleon Dynamite.

Everything is right again with the world until 7:30 am when my son is running away from me in WalMart and his pants fall down. And instead of stopping to pull them UP, he slows slightly to pull DOWN his tighty whities. The woman who caught sight of him before I yelled, "PUNKIN!" and he yanked them back up was not very amused. Punkin, however, held his hand up to his mouth and snickered the entire way back to the cleaning section when he grabbed a mop and ran away from me a second time. That time I chased him, as I didn't know where the mop might end up.

So now it's about 8:00am and I need to stop by Target to buy a puzzle rack because no one else sells them. We manage to survive that experience with most of our dignity and make way towards his doctor's office to pick up the one thing we REALLY need -- his prescription for Ritalin, of which we currently have one dose.

It's 8:32am and I'm being told that they do not have the paper copy nor computer record of his prescription for Ritalin. The nurses working there are not the usual staff, so there's some lack of understanding about what I even need and what can be done to remedy the problem. WAH.

And then it happens. Just as I'm about to lose it completely -- tears and everything -- a third person checks the box and finds that the magical piece of paper has been there the entire time. Or maybe God knew I was about to break and just made one appear. Either way, we got what we needed. I looked at her and said, "It's an ADHD miracle!"

So on the way out of Target I snagged some Dove dark chocolates, the ones with the promises written inside. On the way home I opened it and it read, "Celebrate life's small victories." Indeed, Dove. Indeed. I mean, he DID pull his pants up when I told him to. And he laughed about it, which means he knew it was socially inappropriate. Add that to the prescription miracle and the fact that we're getting our entire $500 deposit on our last apartment refunded and I'd say we're doing all right.

stomping day

2011-03-19T20:26:00.000-07:00

Today was our last full day in our apartment. At 8:15 this morning Punkin decided to march in place in front of the television, stop for 30 seconds when I asked, and then start again. He repeated this for several minutes. During one of the 30 sec0nd intervals, Squiddie banged at us and Punkin, being oblivious as he is, stomped in response. It was REALLY hard not to laugh as I told him, "No marching in the house," and led him over to the couch to work on a puzzle.

Did I tell you my kid -- MY KID -- likes puzzles. At home, too, not just school. Just sayin'. Moving on.

I think any time you're ending a relationship, be it with a person or a home, it pushes you in ways to make moving on easier. My mom says this about teenage girls who are going off to college. For me it happened at 3:36am when I heard shouting and banging, went to the window, and witnessed, as I was dialing 9-1-1, a man shatter the sliding glass door of a neighbor's apartment with his fists. So that was neat.

Punkin and I had a lot of fun unpacking the majority of the kitchen in the new place. Then my mom had the pleasure of dealing with me at the store going, "Uhm, well, maybe, what do you think, uh, okay, maybe this one, well maybe not," over various options to fill an awkward space under the counter in the kitchen.

Tomorrow the real move swings into action; I can't wait for it to be over.

meanwhile, i desperately await a call from the pediatrician

2011-03-15T18:02:00.000-07:00

Have you ever seen a fish flopping in a puddle of water on a dock? It was like that. That sort of unbridled, thwacking energy flinging from side to side combined with the power of at least two cheetah cubs took over my son this evening and wouldn't let go. It was rather amazing, actually.

It's sort of been climbing a scale from "eh" to "oh boy" to "HE HAS TO STOP" over the past month and just tonight my dear friend Jennie asked me, after I told her that there was sadly no more Ritalin left in our day, "Is there anything you can give him to calm him down?" I had to say, "No, no there's not. Maybe a Mountain Dew. I really don't know. I called his doctor."

I tried "jumping" him upside-down on my lap; he flounced off. I tried bouncing him upright on the ball; he purposely fell over. I tried squishing him; he squeezed out. So we went back to brushing. I think it worked. Either that or he finally pooped out. The effect wasn't immediate, though, like in the past, so it was difficult to tell. I need to give it a few more days. Brushing is a pain, but it's better than Fish Cheetah Boy.

So anyway, we're moving on Sunday. I am so excited because it's a ground floor and it has a pool and a playground. We're going to stomp our feet all day long on that ground floor. And I've been such a high-strung mess at home trying to avoid being the recipient of any more delightful notes that I think it's rubbing off on Punkin.

But just like he always does, he brought me back down to earth with a good laugh. He hates when I wash his hair because I have to dump water on his head. So tonight while he's in the bath, before I even have a chance to break out the soap, he turns to me with the water cup and says, "Ready? One more time!" and I got a (very much deserved) face full.

in the world of neighbors, he is squidward

2011-03-11T15:34:00.000-08:00

You know that crabby guy with the big nose who watches fancy television? The one who was finally happy for a few short days only when he went to live among his kind in Squidville? That, for some reason, is how I characterize my new neighbor, who has taken to banging on the ceiling and writing notes in all caps with an excessive number of exclamation points to every resident in the building. We also now have assigned parking because one person, who has lived here all of two months, claimed it was an issue. Whatevs. I got the spot closest to the door.

I realize, though, that if HE'S Squidward, I guess that makes us SpongeBob and Patrick. But considering we rock out on fake guitars and (still) throw our puppies in the potty, it's probably warranted.

I just really want to ask him what he thinks he's accomplishing when he blasts his music the second he walks in the door. Because if he thinks he's going to annoy ME, he really needs to up his game. I work in a preschool.

this is what it's come to

2011-03-02T20:32:00.000-08:00

I am really tired of washing the puppies!

can't even make this up

2011-03-01T20:07:00.000-08:00

I've told quite a few people this story already, but I don't feel it's lived up to it's full glory until I've shared it with the entire internet. Some things are just too awesome to keep to yourself.

A while ago I posted about my frustration over Medicaid's denial of Punkin's usual acid reflux medication. The new liquid medication did not go over well and Punkin soon began vomiting and waking during the night. After playing phone tag with his pediatrician for a week, we received a new prescription for yet another drug. This one, though, is in pill form.

On Friday I was washing my hands at work after changing a rather noxious diaper when the school nurse walked in. "Punkin just threw up. A lot."

I went to collect him and he was as chipper as ever. I thought that maybe since we had changed medications that it wasn't working and his reflux was bothering him again. I took him home to rest, which he didn't seem interested in at all.

While I was on the phone with Social Security, having a mild heart attack over whether I had surpassed my resource limit, he apparently ate a half a bag of peach ring gummy candies. Then the ladies showed up with my Mother of the Year Award and coordinating handbag.

Not five minutes after I took the remaining candy away, he emptied the contents of his stomach all over the couch. Peach vomit everywhere. "What happened, Mom?"

"You're actually sick, that's what happened."

I cleaned him up and he settled himself flat on his back on my lap. A new episode of SpongeBob was starting when he began making that all too familiar gagging sound. I quickly sat him up and the vomit, I kid you not, streamlined directly into my right eyeball.

"Thanks for that. Guess it's time to go see if I still have those antibiotic drops for pinkeye."

iGenius

2011-02-25T17:11:00.000-08:00

For several weeks I've had a post mulling around in my brain about touch-screen devices and how they have opened up a new world for my son. I've been tired and sluggish due to the weather and the post has gone unwritten, but now that Marissa's Bunny is giving away iPads (based on need) and those who complete the (rather lengthy) survey in my ad rotation this cycle also have a chance of winning an iPad, I thought it was about time to get writing.

I don't know why I didn't jump for joy when I first saw the iPod touch being introduced. And then the iPad. I mean, DUH?!! It's PERFECT.

Think about it. Have you ever attempted to teach a child, typically developing or not, how to use a computer mouse? If you do, I suggest spiking your Kool-Aid first. It's awful. You might as well be teaching your cat. Not to say some kids don't naturally "get it," because they do. Somehow they understand the relationship between the tiny arrow on the screen, the mouse, and their hand. They understand to some extent that the arrow has to stay inside a certain area on the screen and that the mouse has two buttons. They are able to press and drag, not bang and shake.

But a touch screen? You see what you want and you TOUCH IT. Just like real life. It's tactile, it's intuitive, and it takes away that awful middle rodent. Brilliant.

I walked in to pick up Punkin from school a few weeks ago and he was playing an online computer game at the Smart Board. It's basically a giant touch screen that from what I understand is connected to the school's server. He was dragging, with his hand, a capital B over to another capital B. Then a lower-case B floated out and he dragged it over to the appropriate corner. "B, Mom. Buh. B."

I think I drooled when my mouth hit the floor.

The next week his teacher showed me her personal iPad that she brings to school. She's downloaded a number of applications for him to use including a dinosaur that he talks to and feeds, a letter tracing game, and a balloon popping game that they use to work on one-to-one correspondence counting.

Of course my first thought was that he needed one of these written into his IEP, but then I remembered an email about name brands or something and his teacher brought it up before I could ask. "They said they won't approve these for anyone." I don't know how they can get away with that, and there very well may be other products out there that they will approve, but in the meantime he's lucky to have the smart board and a generous teacher.

It's just so awesome to me that he's able to participate in something that would otherwise have a serious barrier in the way. He wants to use a mouse, but he can't and it's frustrating. Touch screens are easy and fun. He's playing while he's learning and it doesn't make a mess at all!

I can only imagine what the implications would be when he's older -- sequencing pictures to follow directions to get dressed, make cereal, all of the morning routines. It's a step towards independence, that word we all search after so diligently.

my heart, it melts

2011-02-22T19:13:00.000-08:00

you bought what?

2011-02-15T20:21:00.000-08:00

Do you remember the barking? Oh, the barking. We sometimes still struggle with the barking. So why would I buy my son a pair of stuffed puppies you ask? What's that? Do I need a head slap? Maybe. Why would I allow an $8 puppy and his $8 twin in my home with a barking owner?

Because he's cute. He's really, really cute. When we were in the store he opened two books and had them each read. They were READING. He's been longing after them for months, so when he received Valentine's Day money I figured we could splurge. And honestly I thought the novelty would wear off as soon as we got home. But it's been several days and after the third time he dunked them in the toilet and was without them for several hours while they were being washed, it became apparent that these fluffy friends are something special.

I had washed them in my sink and my mom took them to dry them. We called her before bed to reassure Punkin he would get his puppies back after school the next day and he was not to be consoled. He yelled, "GIVE MY PUPPIES BACK! NOW," smacked the phone, cried because "I hit Oma," apologized, and then hit the phone again. Of course Opa drove them over right away. We couldn't torture the poor child, funny as it was.

And yes, I did just gloss over the fact that my son repeatedly dunks his prized possessions in the crapper, because if I spend too much time thinking about it those fur balls might just end up flushed. By me.

see, mom? see?!

2011-02-10T20:11:00.000-08:00

I CAN have both Fruit Loops and Frosted Flakes for breakfast. Hehehe. You said I could only have one at a time. You're so silly.

doctor prescribed swimming? okay!

2011-02-10T04:37:00.000-08:00

Apparently some people are incapable of, or perhaps just unwilling to, park at a 90 degree angle. Maybe they were sick that day in driver's education or maybe they were just so bad at it that the instructor decided, "You know what, it's not that big of a deal. We'll just move on." I suppose it isn't that big of a deal, but it sure is annoying.

You know what else is annoying? I clean my bathroom, or at the very least the toilet, almost every day and yet it stinks like a barn in there. Is it just the result of having a young child in the house? WHERE IS THE HIDDEN PEE???

These were the thoughts running through my head yesterday as I drove Punkin to one of his favorite places, occupational therapy. For the past few weeks we've been able to use the pool for his sessions, and he is in heaven.

The first week he yelled at me because I didn't bring my swimming suit, too, so I've been sure to "go wimming" the past few weeks as well. She likes to put wet towels around his neck/back and have him look for foam letters floating in the water. And yesterday they worked on pre-scissor skills by squeezing alligator squirters through a target. His favorite, though, is when he lays on a foam raft and she spins him 10 times in one direction and then 10 times in the opposite direction. It's amazing how calm he is the rest of the day and the next morning. It's my favorite.

So no matter how hectic Wednesday afternoons can be because I'm rushing to gather our swim stuff, drive us across town, get him changed, get him dried off and changed again, and then make it home in time for respite so that I can run errands, I LOVE THERAPY. And we love swimming.

i'm so proud

2011-02-05T18:36:00.000-08:00

Things were getting slightly out of hand at the Little People House, so Punkin stepped in with some Potty Training advice.
After a few one-on-one lessons, the guys seemed ready to go out on their own.
Everyone agrees the atmosphere is much more civilized now.

pajama day

2011-02-02T07:59:00.000-08:00

It was a pajama day, I mean a snow day, at our house. Punkin spent most of the day playing with magnetic shapes and his train. It was awesome. Tomorrow will be more of the same as the city deals with Snowpocalypse 2011. It was not so awesome for my dad, who works at a car dealership and spent the day digging out the lot.

My dad is like me; he's not much of a game-player. And I'm not being metaphorical here. I'm lovingly referring to those structured activities my Aunt and I have dubbed BORED games. He'll play them, certainly more willingly and more often than me, but he's not as into them as my mom and sister. But maybe that's because they cheat (right, dad?).

Despite how I feel about games, I find myself itching to introduce them to Punkin. I have a couple, including Candyland, which goes better each time we play, but it's just not a fantastic experience. The rules, even when simplified, require waiting, sitting, and listening. There's also the issue of not throwing the pieces all over the kitchen.

At Christmas he received the game Don't Wake the Hulk. I didn't even look at it. I thought, "No way am I attempting this." Well, yesterday we had time and I had a familiar feeling of invincibility that creeps up and makes me attempt things like homemade Christmas presents. So I got it out and with some minor adjustments, we played a game. And then he asked to play it again!

I should have known, though. Hulk goes night-night and you press the button to try not to wake him. It's perfect! We live for the night-night game at this house. "Seep! Night-night! Wake up! Morning! Lay down! Night-night!" Of course Punkin wants to wake Hulk. Punkin also thinks he is, "Awww. So tute."

but only one of them came with a hat!

2011-01-30T20:44:00.000-08:00

What? In our world, Spongebob action figures can go wherever they want, thankyouverymuch, even if it's Hot Wheels City circa 1989.

"super cheers!"

2011-01-26T18:12:00.000-08:00

Several months ago we lost Toodles for good. Punkin was upset for a week or so but recovered pretty well. Every once in a while, though, he would move the picture, look down the hole in the wall, and call for him. Over the past week his searching increased. It was pretty sad, so I looked online and found a figurine pack that came with a bonus Toodles. It arrived today and he immediately yelled, "MY TOODLES!" This one is much bigger than the original, and he has yet to try to dispose of him. I'll be sure to keep you posted.

he's six, you guys!

2011-01-23T19:27:00.000-08:00

On Wednesday I started talking to Punkin about his birthday party. "It's going to be your birthday. We'll go over to Oma and Opa's house and have a party. We'll eat food with our friends and open presents. It will be a birthday party for you."

"NO PARTY!"

I talked to him about it again several times throughout the week, specifically when he cried because I wouldn't drive him to the store for "kank you my more markers peas."

"Maybe you'll get some at your birthday party."

"NO PARTY! NO BIRTHDAY!"

Well, good. This should be fun.

Birthday parties are a tightrope walk. It takes practice and some failures to figure out what works best for a child with autistic behaviors and sensory processing disorders. I've come to learn to just give Punkin space and not expect perfection. I can't force him to eat cake, I can't force him to want to be around lots of people, and I can't force him to sit and study each present he opens before tossing it aside and tearing apart the next one.

Today went pretty well. By this morning he wasn't completely opposed to the idea of the party, even if it was mostly because of presents. And even though he doesn't eat cake, he was excited to see his cake on the table. He was TICKED OFF when I was helping prepare for the party instead of hanging out with him, but he recovered quickly. And the picture above is him delightedly attempting to blow out his birthday candles.

Did I tell you about the candle thing? He loves candles. You know how churches have candlelight services on Christmas Eve? Punkin spent the entire service this year asking when we were going to light his candle and figuring out ways to steal other people's candles. All of a sudden he wanted to sit with my mom; all of a sudden my mom's candle was missing. Then he wanted to sit with Auntie, then Opa. Pretty soon Punkin has three candles. He even convinced a complete stranger to give him hers after the service was over.

What I don't understand is why he couldn't blow out any of the candles today, because at that service on Christmas Eve, he blew his candle out during Silent Night several times. "OH NO, what happen my cannel? Uh fix it? More cannel?" And when I lit it for the third time and told him, "No more or I take it away, " he fake sneezed to extinguish it.

But anyway, the actual party was fine. He loved opening his presents and seemed excited about them. It was after the birthday party ended and the football party began that things got a little tense. I let him watch movies on his portable DVD player and eat all the chips and cheese his heart desired, but it just wasn't the SAME.

See, Punkin basically owns the basement at my parent's house when we visit. He gets the recliner and the remote. He also gets to control the lighting. Not so much today. This caused some anger, most of which he held back until everyone left and he decided to beat up Oma. And then he cried because I wouldn't let him color anymore due to excessive marker throwing. And then he cried because I wouldn't take him to buy a hot dog. And then he cried because it was time for bed. Oh, the horror.

Parties are fine, but really I think they're more for the family and for me than for him. I definitely don't know that he'll have a typical party with other kids any time soon seeing since he needs to take frequent breaks from the action and can't handle the pressure as well as other kids his age. That's okay, though. We just want to have fun. And I'm pretty sure that as long as he has at least one balloon, we're golden.

tonight may be the night

2011-01-18T16:52:00.000-08:00

It's been four days since either of us have slept through the night, but I have a good feeling that tonight is the one. It has to be, right? Right?

He woke up on Friday at 4:15am, but it was FRIDAY -- respite day -- so I was in good spirits. Saturday was not good. He woke up at 4:15am again and I don't know if it was my sour mood or his high-powered engine, but the morning ended in me calling my mom in tears, "Will you just c-c-come over w-w-w-when you're done?" I couldn't handle the loudness of his toys and the stress of him banging his head against the wall, which seems to be his new method of gaining my attention. A couple hours of silence later and I missed him too much to stay away any longer.

Sunday morning I planned to enroll him in Sunday School, but as I helped him sit up on the couch I noticed he felt hot. Sure enough, he had a fever. He spent the day in a lump on the couch, save the short time Oma and Opa brought me lunch, and the night whimpering. The next morning I noticed that he had a lump on his neck.

I don't remember the last time that he cried so much while sick. In fact, I don't remember the last time he cried this much at all. I slept in his bed and he woke up in the middle of the night and said, "Hurt," pointed to his mouth, "Hurt." He never expresses that he's in pain, so I was kind of excited that he communicated that to me, but also heartbroken that I couldn't do anything about it since he refuses to swallow pain medication.

He's on antibiotics for a swollen lymph node, which he will drink only because it's pink; he says, "is beauful." But so far nothing's changed, including the insanity of his sleep schedule. He first woke at 2:15am, we watched Alvin and the Chipmunks (because what else is there to do?), and we fell asleep again from about 4-6am.

I just wish I could get more out of him. I'm thankful for the communication skills he has, as they are certainly something to be proud of, but I still feel like he's an infant sometimes and I'm playing this guessing game about what is bothering him and why. I do secretly, or not so secretly anymore, enjoy the extra cuddle time.

i didn't forget that i have a blog

2011-01-15T20:28:00.000-08:00

I just haven't been feeling especially chatty, and I've been rather distracted. So I'll just go the easy route and give you a run-down of some things that have happened over the past week.

Punkin pooped his pants nearly every day at home, though never at school. Today, he got up from playing, ran to the bathroom, did his number two, and acted like I had three heads when I followed him in there. Hey, remember that time you flushed my face cream? Or that other time you put an entire roll of toilet paper in the toilet? Or that other time your sharks went "swimming"? I'm not leaving you alone for a second, buddy, so don't get all modest on me.

We have watched Alvin and the Chipmunks and Shrek Forever After approximately 53,247 times each, although I rarely am able to see the last 10 minutes of either movie because we have to start it "again."

Someone put a fake frog downstairs near the laundry. Turns out I'm afraid of frogs.

I caught a cold from Punkin and because I have super awesome lungs, ended up missing three days of work because of my cough and a case of The Pinkeye. I'm always catching the little kid diseases. I'd rate pinkeye way above ringworm, though, in case you were wondering.

Also, I managed to plan his birthday party for what will now be the same day and time that the Bears are playing the Packers; looks like we'll be having a football party!

mr. potato head tries to sneak into the superhero convention

2011-01-08T20:34:00.000-08:00

"Do you think anyone will notice?"

"Notice? You have wings taped to your back. Me? I'm a professional. I'm warning you, stay back 15 feet or I'm blasting you with my laser."

"Your laser? You mean your little light bulb that doesn't blink?"

wah!

2011-01-04T11:38:00.000-08:00

If your child has acid reflux, then you know how important their medication is to both of you. Punkin can miss up to two doses and be okay. Any more than that, and I'm cleaning up pukey sheets. For several years, he's been taking Prevacid Solutabs. They dissolve in a small amount of water on a spoon, they taste good, and they transport easily.

I called the other day to refill the prescription, hopeful that I wasn't calling too soon for medicaid's liking, but also not so late that we'd be out of pills. The automated system told me a generic was available, and I agreed to save the state some money and use it.

I went to pick it up and the woman hands me a large, cold bottle and a syringe. I ask her if this in fact the correct medication.

"Yes, it is."

"Can I get the solutabs instead? I know I agreed to the generic. I'm so sorry, he will refuse to take this."

"It looks like they make a solutab."

"Great."

"But insurance doesn't cover it."

"They always have before."

"Well, they change their policies a lot, and it's not the preferred drug."

Call me a control freak if you want, but I don't feel like a bunch of people on a committee somewhere should be able to decide which medications are available to me. And I mean available, because even this generic costs $263 for a month's supply. So while I'm grateful that medicaid is here to cover Punkin's medical needs, I am irritated at any insurance company (because medicaid isn't the only one that does it) that insists it knows something my child's doctor and I don't.

So now my son not only is unable to take chewable ritalin, which I found out they do make, because it's not covered, but now I get to fight with him to drink two teaspoons of reflux meds a day.

Maybe someone on that committee can come clean that yucky liquid off my kitchen floor.

go snow!

2011-01-02T20:03:00.000-08:00

Punkin finds snowball fights hilarious.

We did it! Hooray!

Punkin was awesome on our trip, and now I'm just dealing with a bad cold and cookie withdrawl. I feel so blessed to have such a wonderful extended family who understands our needs. I also spoke to his pediatrician, with Oma's encouragement, about giving him a third dose of ritalin in the afternoon. It made today much easier, that's for sure! It really wasn't fair to him to expect that he be able to control his impulses in the evening the way he does during the day without the help of his medicine.