Friday, August 17, 2012

Finding the Trigger and Fixing the Problem

Angry over stimulated Benji
The last two or so weeks have been quite trying for Benji. (By the way, this is Benji's mom posting today)

Second grade is a big adjustment for him. There is a lot of homework that involves a lot of writing. He probably has the strictest teacher he has ever had. (I think this is a good thing.) He only has a couple friends in his class from previous years, so he is having to make new friends. (This is hard on Benji, but better he learn how in second grade then as an adult.)

All of these changes has had an affect on Benji that we expected. We have learned that there is always an adjustment period. However, this go around things were not proceeding normally. Benji was getting very emotional. He was constantly on the go and could not focus. If he got upset, it turned to an aggressive anger very quickly. This was very unlike our sweet, loving, compassionate Benji. After one episode of him getting angry, we got him calmed down and he told us his heart was hurting. This told me that we had to find out what was going on.

Poison for Benji
I started asking questions. I would ask about his day and get basic answers that really did not get me anywhere. That is, until Monday. After I went over his homework with him and we had our chit chat I noticed that he was hiding his jacket. I asked what he had. There, in his jacket, was a roll of sweet tarts. Nice bright colored candy with bright pink/red, blue, purple and orange pieces. If I had the ingredient list I already know what is used for the coloring. Red 40, Yellow 5/6 ... In fact, doing a quick search.

These candies are poison to my child. He is sensitive to MSG (which is cleverly mislabeled ALL the time as maltodextrin), allergic to RED 40, sensitive to Yellow 5/6. In addition, he is only supposed to have natural sugars and this has corn syrup solids. (

Now, the part that upsets me is that Benji has an IEP and the last copy I have (I say that because I am a cynic) says that he is only to eat the food we provide. Also, as a parent of a special needs child (Benji's dietary needs and medical needs) I write an introduction letter EVERY year for his new teacher. This year I gave that letter to his teacher at open house and covered the bases with her. This still happened.

Benji was getting these "rewards" daily for good behavior. He would get the candy at the end of the day and eat it without me knowing he ever got them. (He knows he shouldn't have them but it is like he craves them. Kind of like a drug addict that knows it is bad for them but can't help it.)

The good thing is I have gotten in contact with the teacher and explained the situation more thoroughly and stressed the importance. Benji now has his own treat bucket with "Benji safe" rewards. Which this works better than his plan once we explained to him the situation. Tuesday he got in the truck and told me, "Momma! I got a card pulled today, so I couldn't get any candy!"

The importance here is making sure to have communication with the teacher and the principal. The key is, when the communication fails (because it will), to not attack like a momma bear but to confidently advocate for your child in a manner that is not brash. You have to know what your child's rights are, know what is in the IEP, know what you have informed the school and the teacher of. You also have to be prepared to take the next step.

Our family is hopeful that this is the only "problem" Benji has this school year. We are understanding in regard to it being the beginning of the school year and chaotic, but it does not excuse it.

I pray that through our experience, somebody else is helped.

Wednesday, August 15, 2012

Dentist Trip... Ya!!

 Last week I had to go back to the dentist. I had a little cavity, not a bad one. Seems that it is very common for CHD kids to have problems with their teeth. It is probably because of all the medication and everything. Thankfully, right now and for the past couple years I have not had to be on any.

Ya! the appliance is finally out!
Our dentist did tell me though that if mom gave him a good report and he could not see any signs of me sucking my thumb that the appliance would be coming out while they were in there. I was SO VERY excited. It has been over a year! I was more than ready for it to come out.

Here is some information about the appliance. It does not hurt. It makes it very uncomfortable to suck your thumb. The suction does not form and the metal pushes up against the top of your mouth. On top of that, while the appliance is in there is no eating chips or any gummy snacks. (That hurt, I love potato chips)

In some cases, not mine, with the appliance they put little burrs on it so that when you suck on your thumb it pricks it. Can we say ouch?!?  All I know is had I known it would give me this much grief, I never would have sucked my thumb.

Loopy juice made for a good nap
After the cavity was taken care of (it was a little one on the side of a molar) and the appliance removed I was ready for a nap. I felt sorry for mom. It was raining really hard and somebody parked really close to the truck so she had to climb through to get me in my seat. She's a good mommy though. We went to Nana's house for me to sleep off the loopy juice, and boy did I sleep.

I slept...

and I slept..
 and I slept.

About four hours later mom woke me up and had some Natural Sierra Mist to drink. It was good. It took a bit getting used to the appliance being gone, but by dinner time I was off to the races!

Moral of the story? Don't suck your thumb.

I have to add in, I am a very oral defensive child. I do not like anybody messing with my mouth. My dentist has been bitten in the past. Not this time! I was not a perfect angel for this procedure, but I did not wiggle too bad. Because of my sensory issues we choose sedation. Thankfully it works. It does cause me to miss a day of school though. Sedation also causes me to get cranky and irritable, little bit whiny and such too.

Saturday, August 04, 2012

Finding a Calm

I was hoping sleeping in this morning would help with my sensory stuff today. It seemed to at first, until the busyness of the day caught up.
I have been having a difficut time still with the schedule changes. (It typically takes me a couple weeks to get used to it.) So mom let me play my Nintendo DS after I had breakfast and just have me time while everybody did their thing. It worked out pretty good.
Today is one of my sister's birthday and tomorrow one of my brother's, so we went to the local O'Charley's for dinner. We went early hoping the place wouldn't be too crowded because it gets noisy sometimes.
Long story short, minus the moments I was eating I stayed under the table. It was quieter there. I don't think we will eat there again. They remodeled recently and mom said the way the sound carries is different now. All I know is it was very loud and noisy.
I was just glad there was calm under the table.
Now enters the time of year when the sensory diet comes into play. I am so glad mom and dad look out for me. We have things at home that help me. I just have to adjust to school.

Thursday, August 02, 2012

Much to do About EVERYTHING!!

Here where I live, we start school on August 1st. We have an extended year schedule that gives us a fall break, winter break and spring break while shortening our summer break. It works pretty good. I like it, most of the time.

An Overwhelming Day!
Last week, mom found out who my teacher was going to be for 2nd grade. It is the same teacher one of my brothers had two years ago. His experience was difficult and he started telling me all of this scary stuff about homework and how strict she is in class. Honestly, my brother scared me.

I was already concerned about going to 2nd grade. I do not write very well, and sometimes I get picked on for it. Mom thinks it is from muscle tone or something to do with scar tissue. (MOM NOTE** On Benji's right wrist is where the PICC line was when he had the closed heart surgery to repair the CoArctation of the Aorta at one week of age. His right hand has always been a little weaker when it comes to grasping.) I am also worried about reading. I have read all the Dr. Seuss books in the library and what if there isn't anything else that I can read? Somethings are hard for me to read.

Most of all, the biggest thing I am worried about? What if I don't have any friends in my class? What if nobody likes me? What if my teacher don't like me? What if the class is loud? What if the teacher yells? What if? What if? What if?

Tuesday night mom made sure we went to Tae Kwon Do and I got a good work out in. I think it helped some. I fell alseep before we got home. I did sleep pretty good to. I did not want to go to school Wednesday morning though. I was too anxious. I was very worked up.

Then Mom reminded me again (she had told me a couple times) that just because my brother had the experience he had with this teacher, it did not mean that I would have the same experience. After all, the teacher I had last year, he also had and the experience was different.   (MOM NOTE**  Big brother likes to exaggerate and get under Benji's skin, the teacher is a good teacher. Homework was an issue but that is because big brother was lazy when it came to homework. Teacher is strict and organized, should work well.)  After that reminder, I decided that my day was going to be better. Then when we got to school I saw a couple of my friends and found out some of them were in my class!

The first day went mostly well. There were a couple bumps. I was very tired after school. And mom said I was a little stimmy when I got home. I was crashing into things and falling on the floor. At church I did stay with her and dad because my day wore me out.

Now, I feel better... still a bit anxious. Tonight's Tae Kwon Do workout will be needed. I just need for those around me to understand that I get overwhelmed, and when I do I need a break. I don't expect kids my age to always get it, but I need for adults to be understanding.

Maybe you aren't an adult around me, but you are around a kid like me. The best thing you can do is just try to be understanding. Picking on a kid and saying things like "Aww... you had to stay with your mommy." is mean. It's being a bully. Especially if you have already been told the kid is special needs. Be loving and nurturing. Lose the hate.