Monday, April 23, 2012

all that running tuckered him out!

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

Friday, April 20, 2012

day nine: funny joke

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

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

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

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

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


Tuesday, April 17, 2012

day seven: mommy has a meltdown

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

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

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

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

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

"I'm her voice mail."

 "Okay, well, that doesn't help me."

 "I can transfer you to a nurse."

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

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

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

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

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

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

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

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

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

 "Great."

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

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

 "I see."

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

 Until.

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

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

Monday, April 16, 2012

day six: give me ritalin

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

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

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

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

We need medicine.

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

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

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

Wednesday, April 11, 2012

done lost her mind

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

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

WE ARE STOPPING THE RITALIN.

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

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

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

Monday, April 9, 2012

fostering independence

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

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




GET PLATE
GET BREAD

TOAST BREAD


GET KNIFE


BUTTER TOAST



PUT JELLY ON TOAST



EAT!

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

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

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

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

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

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


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

Thursday, April 5, 2012

is my cap?

It's his lucky cap. He got the idea from an episode of Curious George. He's also started playing hopscotch because of that episode, which has in turn improved his jumping skills, to the delight of his occupational therapist. And yes, I am aware of the irony of wearing a Cubs hat for luck. Also, when did my son get so old?

Monday, April 2, 2012

best idea ever

We are totally driving the extra mile to this grocery store every week so Punkin can have his own shopping cart.