Monday, January 30, 2012
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.
Thursday, January 26, 2012
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.
Monday, January 23, 2012
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.
Thursday, January 19, 2012
Monday, January 16, 2012
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."
Tuesday, January 10, 2012
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.
"Ah," Clamps mouth shut on tongue depressor.
Tug - of - war ensues.
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.
Monday, January 9, 2012
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.
Monday, January 2, 2012
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 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!