Tuesday, October 02, 2012

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.

Thursday, September 13, 2012

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.

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. (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.

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.

Monday, June 04, 2012

Summer! What?!

Mom has decided that part of our summer break will involve summer home school. I am actually quite excited about it. I have wanted mom to home school all year.

So far we have 2 workbooks, a spelling list and reading! It is so exciting. I wonder what field trips we will have. And if we will have recess and gym?

Maybe I will do really good and mom will decide to home school full time? Or not?

I like home school so far. Of course, this is just the first day. Mom says the main focus is to work on me being able to focus on things and do my school work. Then to keep me from forgetting what I have already learned.

Interested in the books Mom is using?

The Original Summer Bridge Activities 1-2
Summer Splash Learning Activities Grades 1-2
The Complete Book of Bible Activities: Grades 2-4

Ready Readers Giant Collection, Stage 1, Preschool-Grade 1

I am going into the second grade. I have not enjoyed reading up until recently and that changed because I really like Dr. Seuss. So Mom found the old Ready Reader book she had with my older sisters to help me. We have a couple of those and once we get through them, then we can read some fun adventure books like Treasure Island or maybe The Jungle Book..

What are you planning for the summer? I am sure it won't all be academic for me.

Disclaimer: The product links are affiliate links to either ChristianBook.com or Amazon.com.

Wednesday, May 23, 2012

Hard Work Pays Off!

Year End A/B Honor Roll!!
We have been working hard this school year. Academics and sensory tolerance has grown wonderfully. And while there is always room for improvement, we have ended our 1st grade year with A/B Honor Roll!

Sure there have been days (or weeks) when I have begged mom to home school me. There have been days that I was excited to be going to school! (Like when we had the field trip to the farm a couple weeks ago.) All and all it is a learning experience. I met new people this year, and I think I made new friends.

Now we have one more day of school and we get our report cards Friday. :)

Monday, April 16, 2012

Autism Awareness - behaviors

To be clear, I am not diagnosed with Autism. I am diagnosed with sensory processing disorder and disorder of childhood with some hyper-kinetic behaviors. SPD does typically go hand in hand with many Autism Spectrum Disorders and the hyper-kinetic can also be associated with attention deficit hyperactivity issues. (That said, this is my disclaimer.)

For children that have SPD and that are on that Autism spectrum many behaviors are uncontrollable by the child themselves. They need help from those around them. For myself, I have "warning signs" that I exhibit prior to having a problem. Adults that pay attention to me and that get to know me learn these signs pretty quickly. My sensory issues can be closely related to what I eat and so my diet matters too.

In a classroom environment, church or school, I sometimes get overwhelmed if it is loud, bright, chaotic, etc. Mom described it very well the other day when she was explaining how her migraine made her feel. Any little thing hurt, pitches of sound, touch, intensity of light, too much activity going on, all of that can contribute to my behavior.

My "warning signs" start with a complaint. I will say its too loud or say I need my sunglasses. The next step is I get into defensive postures, climbing under tables or desks, cuddling into a trusted adult/sibling, hiding. If the issue is not resolved I get agitated. I sling my arms out at people to chase them away, not trying to hurt them, I just don't want to be social. This is when mom needs to be gotten because if it gets worse from here, it gets ugly.

Why am I sharing this? Not to leave a stigma. I share because there is plenty of time to defuse the situation. If you are dealing with a child like me, you cannot yell at them to correct them, it will only make the situation worse. Yelling at children with sensory issues is an assault on multiple senses. One of my brothers has sensory integration disorder and one of his teachers did not understand what that meant so when she would correct him she would raise her voice, his behavior would get worse, then she would yell. This would continue until he burst out into a rage of throwing objects. The rage would not have happened had the teacher been able to keep her voice calm.

My advice? Get help. Learn how to cope with the behaviors. You are not alone.

Friday, April 13, 2012

Autism Awareness Month - diet concerns

New statistics in the United States say that 1 out of 88 children are on the autism spectrum. Seems overwhelming. Wow.

Then I think about friends and myself. Many of us don't 'look' different. We might be quirky or a little hyper (more than average). But then snack or lunch time comes...

See, my behaviors are affected by the foods I eat. Mom discovered early on that I had milk intolerance. This was one that had to be taken care of quickly as I was nursing and also recovering from closed heart surgery. The doctors wanted her to nurse as long as possible so mom had to change her diet for me. No more cow's milk for her!

In the last seven years we have discovered a few things that I drastically react to. I share because they could be things for you to look into with yourself or your child.

My body does not process unnatural sugar. I can not eat things with high fructose corn syrup, corn syrup, Equal, Nutrasweet, Splenda, etc in them because my body does not recognize them as sweeteners.  For me this is dangerous because I am hypoglycemic, my sugar drops low. In addition, these chemicals cause me to not be able to focus and they also affect my sensory issues.

The most harmful group of chemicals we have found that cause the most disruption for me so far, are the AZO compounds. You might recognize some of them: red 40, yellow 5, yellow 6, azodicarbonamide.  Red 40 I have the worst reaction to. It increases my heart rate and I am unable to calm down for HOURS. The last time I had some I didn't stop for 12 hours and then I passed out, when I woke up the next morning my head hurt really bad, my eyes had dark circles under them and I didn't want to be talked to or touched.

In order to avoid these problem chemicals in the foods, we eat a more natural diet. When mom and dad go grocery shopping they buy things that are not processed as much so that the chemicals are not there. We avoid most food coloring just to be safe and the same with sweeteners. Whenever possible, we rely on non-processed sugars which would be fruit, honey, and natural sugar. Although for the most part we try to avoid too much sugar anyway and focus on a diet with fruit and vegetables that is supplemented with meat and beans.

My opinion is our food is one of the reasons behind so many kids having spectrum diagnosis. Mom and Dad are no where near done with seeing which foods I react to. Every summer its a new adventure. The bottom line is the less processing and the more natural, the better.

Tuesday, February 14, 2012

Congenital Heart Defect Awareness

One of the things we use my blog for is to draw attention to congenital heart defects (CHD). I was born with coarctation of the aorta(CoA), bicuspid aortic valve with stenosis and had a patent ductus arteriosis (PDA). At a week of age my cardiac surgeon removed the PDA and repaired the CoA with a subclavian flap. One of the reasons the doctors were able to find the CHDs was because a simple and inexpensive test called a pulse ox. Its a little device that measures the oxygen levels in your blood along with pulse.
My parents were blessed, Tennessee did not have a law concerning pulse oximetery at that time. Approximately 1 in 100 babies in the U.S. are born with a CHD. You have to be aware.

Thursday, January 05, 2012

It's a New Year with High Hopes

I am so excited! First and foremost mom is trying to see what she can do about getting tickets so I can see TobyMac on my birthday. I love TobyMac and he is doing a concert in Clarksville the night of my birthday. Since it is 'unplugged' we think with my sunglasses and headphones it won't be a problem. I am just really hoping I can go.

Other than that, I am trying to talk mom into homeschooling me. She laughed because of my reasoning, but I have really thought it out. If I were homeschooled I could sleep in, we could do lots of field trips, and she wouldn't have to worry about if the teachers or classmates gave me things to eat that I shouldn't have. She did say she would think about it for the fall... so I need to convince her. :)

I have belt testing in Tae Kwon Do next Saturday, this week is pizza party where we celebrate the birthdays of the month. My brothers started tkd this week.

I did have a boo boo yesterday. Got a goose-egg at school that resulted in me going to the nurse. I'm okay, but it hurt. It did upset me that mom kept me with her at church instead of going to kids church, but I was tired and after playing fruit ninja for awhile I took a nap.