So, what? It's Strep Throat.

This past week I've had strep throat. To many people, that does not mean a whole lot. You go to the doctor, get some antibiotics and be done with it.

There is just a slight problem when it comes to me.

Because of my sensory issues, I am not able to explain to mom and dad that my throat hurts and that it feels like I have razor blades cutting me every time I swallow. Instead I get cranky and whiny. Also, because I suffer from allergies the symptoms are masked and it is hard to tell. It really is funny to hear mom talk to the doctor when he asks why we are there for what appears to be allergy issues.

"I am not seeing any symptoms other than what appears to be allergies, why are we here today?"

"He's sick."

"Why do you think so?"

"Try living with him."

I imagine only families with kids that have sensory issues would fully understand that conversation. Because at the end of the conversation the nurse stepped in and relayed to the doctor that the strep test came back positive.

Then this leads to why strep throat can be dangerous for a child like me.

  If untreated, strep throat can sometimes cause complications such as kidney inflammation and rheumatic fever. Rheumatic fever can lead to painful and inflamed joints, a rash and even damage to heart valves.  - MayoClinic.com

 See, I have a bicuspid aortic valve with stenosis that leaks already. The walls of the valve were already thickened when I was born. You say you thought I had surgery to repair my heart? Oh, I had closed heart surgery to repair my aorta. The part of my heart they repaired was outside of the main muscle. I had a CoArctation of the Aorta that was repaired with the subclavian flap, a technique where they used the artery that led towards my left arm to provide tissue for the aorta because it was too narrow for blood to flow through to the rest of my body.

I apologize, I digressed slightly. Strep throat can be dangerous in anybody that has a heart condition, especially a person with a problem with their valves. Obviously, the strep would have to progress in to rheumatic fever. The key is to stay healthy and as soon as symptoms present get to the doctor. With a sensory processing disorder child, it is not always so easy. In that case, there needs to be an understanding from those around the family that the child's health is extremely important. Rheumatic fever can lead to heart attack or stroke.

We do not share this information to fear monger. It is for enlightenment. At our house, my mom and dad pray over us and before we go to the doctor we are prayed over. Mom believes in us eating a healthy diet and getting plenty of exercise. All of these things promote health. Unfortunately, sometimes I get sick. When that happens, I go to the doctor and take medicine. It is not the end of the world, but if it takes longer than normal to get over something then my parents get concerned. Their concern isn't because they doubt God, it's because they love me and don't want me to be sick.

Can you hear me now?

I have this joy inside me, it tends to happen on Sunday morning especially. When we are singing songs about God I get excited and sing at the top of my voice because God gets me happy. Does He get you excited?

It's kind of weird you know. There are a few older people in our church and they love my singing they tell me I need to keep singing and not quit. But I can tell there are a few people that don't like my singing. Momma said that there is nothing wrong with my singing as long as I am singing to God and for God.

Sing aloud unto God our strength: make a joyful noise unto the God of Jacob.

Psalm 81:1 (KJV)

Mom does suppose that one reason I sing as loud as I do is because I am making my own noise to cover the noise that hurts my ears. This is possible. I do have sensory processing disorder and I do process input to my senses differently than those that do not have the disorder. It is a neurological issue, so its not like I can turn it on and off either. So, if we are in church together and you hear me singing, I hop you understand and know that I am just singing to praise God.

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. (http://www.foodfacts.com/NutritionFacts/Hard/Wonka-Sweettarts-145-oz/10320)

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.