Sunday, September 29, 2013

I did something amazing!

Before the GovRun
Saturday, my mom took me to her school for a color run that she was participating in. When we checked in, they had an extra ticket for her so I was able to participate too... if I wanted it to.

When I first heard about it, I was yeah! I can run! Then I was told they throw paint at you while you are running. I will be honest, that didn't sound too fun.

Mom told me to think about it.

We had the day. There was a fun carnival with 'stuff-a-bear' activities and inflatable bounce houses. After lunch was when I had to make the decision so that we knew who was going to go with mom.

We talked about it and mom told me that there was an option to walk or run around the paint stations so that we didn't get covered in paint. There was also the option to walk instead of run, mom preferred this one because she has a bad knee. So after much deliberation, I decided to do it.

Mom told me that after the run we could leave because they were going to have a loud party with music and more paint throwing that would involve people bumping into each other and getting paint all over us in addition to it just being loud. I was fine with that.

Then it was time for the race to start.

I am not sure what came over me, but when they did the count down and said go... I ran. Dad said I finished the mile in less than ten minutes, with not a speck of paint on me. I just ran too fast for it to land on me.

Once mom caught up to me I begged her to go into the after party and we had a blast. We threw paint, tossed huge beach balls, got sprayed with paint, and danced. It was fun.

But when it was all over, I was done. I was tired and more than ready to go home and go to bed. I did tell mom that the reason I could handle the silliness was because I wanted to have fun. It is all a matter of focus for me. If I focus on having fun, I can enjoy myself. That way the fact that the music was crazy loud did not hurt. And while I changed clothes as soon as we got to the truck and took a bath as soon as we got home, I was okay. I am slowly adjusting to life with sensory processing disorder.
At the end of it all.

Wednesday, June 19, 2013

Sensory Processing Disorder and summer

Most kids look forward to getting out of school and enjoying summer break.

Most kids revel in the lack of a set schedule during the summer.

Most kids love to be able to sleep in and stay up late.

I am not most kids.

Do not get me wrong. I enjoy not being in school and I enjoy being able to sleep late in the mornings. The problem is, without a schedule I do not know what to do with myself.

See, if I am unsure of what is happening I get anxious. The anxiety builds and then I am hyper and things that I can usually control start bothering me.

One may ask how that has anything to do with sensory processing disorder and that is a very good question. The reason I need some sort of schedule, even a flexible one, is so I can regulate myself. The goal for me is to be able to live as close to a normal life as possible and the sooner I learn to do that, the better. Learning how to control my sensory issues, which include auditory, visual, and tactile defensiveness, is key to being able to function in society.

I mean really. It is not like I can start throwing myself on the ground or against a wall when I need vestibular stimulation. It is much better for me to swing or jump on a trampoline. Yet, those activities are not always an option depending on where I am.

Through trial and error we have discovered that for me it is quite beneficial to be active first thing in the morning then have a break where we work on some summer school activities, after that more activity.

The activity ranges from playing outside on the swing set to organized play to going to a playground or even swimming. There are some activities such as baseball, football, and soccer that I am unable to play because of my heart, but other than that I can play most games outside.

I have a bicuspid aortic valve with stenosis, so we have to be careful about contact sports and activities.

The key to relieving anxiety and minimizing SPD issues is being flexible and acknowledging limits. There are mornings that I wake up and I just do not want to do anything, thankfully my mom can see that and she is flexible with her schedule most days to be able to accommodate it. When she cannot, she has a backup plan. Mom seems to always have a backup plan.

Saturday, June 15, 2013

Camp… Anxiety… SPD… and Me, Part 2

The best way to face any challenge is head on, at least in theory.

As preparation for camp, mom made sure I had a lavender bath Sunday night and that I went to bed at a good time. Unfortunately, I was so worked up I still could not sleep and ended up keeping her up most of the night too.

Monday morning finally got here and the anticipation was made worse when we had to drop my brother off at his camp 30 minutes before me. So we sat. And I was anxious. What if it was noisy? Would I have any friends? Would they like me? Would it be too loud? Would it be fun? What if I could not handle the music? Would the teacher be nice?

And then, it was time.

Mom took me in to meet Ms. Beth. She was in charge of the art and she already was aware of my sensory processing disorder from what mom told me. When I met her she seemed nice; there was a lot of stuff going on in the art room, but that is how art rooms are supposed to be. I told Ms. Beth that this was the first time I was doing anything without my mom besides going to school or kids church. I think she noticed I was nervous.

After I got to see the art room, we went to the music room where everybody was waiting to start the day. Ms. Jackie was in there. I met a couple of the kids, but I was a little shy and stayed to myself at first. I did relax some, to the point that I did not realize mom had left until after we started our art project of the day.
When I mom picked me up I was happy to share that I made a friend and we had a couple things in common. I really enjoyed art! We painted pottery pieces with *Spots Pots Mobile Pottery*. Music was a little hard for me because it was loud and it hurt my head.

Tuesday morning when mom took me to camp she spoke with Ms. Jackie and let her know about my sensory processing disorder. She understood and told me that if it got too loud to just let her know and she would let me sit in her office. It really felt GREAT having a teacher understand my needs.

The anxiety subsided after Tuesday and while there were still some sensory issues going on, things went great. It was really difficult for me to not eat the salt that we were using to make texture with on one of our paintings. It felt so odd, too.

The best thing of camp was that I made two friends; one wanted to stay in touch and made sure my mom had his dad’s information. I thought that was cool. Plus, I want to do it again next year! It was fun. Camp is not as scary as I thought it would be.

We also got to have an art show and a concert to show our family and friends what all we did this past week. It was fun. Mom and Dad got to see me sing and play an instrument or two. That was so cool.

These past two posts may not seem like much, but for those that know Benji you know how taxing it is for him to adjust to something different. He absolutely hates change. In a realization this week, because of me always being there and helping him when his SPD flares up, I have caused Benji to grow up in a sheltered bubble. He is not one of those children that always gets his way and such, it is just a matter of his experiences have been limited because as his mom I have been concerned, afraid, terrified, whatever to let the chips fall where they may. True, he is only eight, there is nothing wrong with your child being a child. Lord knows too many kids grow up way to fast these days anyway. All I am saying is that, my eyes were opened along with Benji's. - Benji's mom

Friday, June 14, 2013

Camp… Anxiety… SPD… and Me, Part 1

Mom signed me up for Summer Arts Academy this week.

When she told me about it, I was worried. The first thoughts that went through my mind were that my mom was sending me away. I did not want to be sent away. I had never been anywhere without my mom except church and school and that does not really count because with church mom is in the building and school we have to go. I mean I have gone to friend’s houses but only a couple and my mom, or dad, usually stays because I like it that way.

Needless to say, the thought of camp was scary at first.

Mom told me all about the art stuff we would get to do and then that there would also be music. I was excited about the art, I love art. It is so much fun to make stuff and all. The music part, I was not so excited about.

I have sensory processing disorder. I am auditory, visual, and tactile defensive. I have gone through a LOT of occupational therapy when I was younger, and mom has continued, to desensitize the tactile. However, what I see and what I hear cannot really be desensitized. There are ways to cope, but if it hurts, it hurts.

All of this to say, music is a gray area. I love music, as long as it is on my terms. It is something that I need to be able to control or be able to remove myself. But hey, I am eight, I sometimes do not handle situations correctly and when I am already anxious about a situation it can make it worse.

The anxiousness was evident when we went to church Sunday. I could not tolerate the worship music and had to wear my headphones. Mom started to get concerned; she knew that if I did not relax that camp would be a wash.

Things my mom does to calm me
A few tricks that mom does to help me when I get anxious or ‘hyperkinetic’. No one thing works exclusively but it does seem to help.

A warm lavender Epsomsalt bath – Epsom salt allegedly helps remove impurities from your body and then lavender helps relax you.*

Lavender soap – we use a homemade lavender soap that has lavender and evening primrose oil in it. In our experience the soap aides in calming Benji down. (Lavender Lullabyfrom Neika’s Naturals)*

Lavender Deodorant – this is new to our regimen. There needed to be something that could be used during the day that would not put Benji to sleep, but would help calm. So far, it seems to do the trick.*

Exercises – Proprioceptive feedback helps, such as: Jumping Jacks, Wall Pushups, doing Sit-ups on the exercise ball, jumping on the trampoline, and running. All of these exercises give feedback into the nerves and joints that perhaps everyday activity does not necessarily give.

Massage – deep pressure massage. In Benji’s case he prefers a deep massage, the brushing technique as we were shown does not help, it makes him worse.

Hug Vest – A silicone pressure vest that gives hugs essentially. (Personally, I would talk to your therapist before trying this.)

Weighted Blanket – We have an old homemade quilt that is HEAVY. On Benji’s bad days I will usually find him in his room, under his bed in the corner wrapped up in this quilt.

*Be cautious with Lavender, some people are allergic to it.

Thursday, February 07, 2013

Congenital Heart Defect Awareness Week, GO!

This week, February 7-14, is Congenital Heart Defect Awareness Week. There is a very good chance social media will become bombarded with many individuals and organizations posting to bring awareness to the number one birth defect in the United States.

I am 1 in 100
Currently, the figures for congenital heart defects are as staggering as 1 in 100 births, yet many women of childbearing age are unaware of the risk of having a baby with a defective heart. While in recent years there have been children born to those with celebrity status which has drawn some attention to this medical crisis, it is not enough.

Newborn screening in EVERY state should be MANDATORY, not optional to check with pulse oximetry. While pulse ox does not catch every heart defect it does catch more than doing nothing and it does save lives, this warrants the cost of a $15 dollar test on a piece of equipment that can be reused numerous times. Ask any parent that has found out about CHD from a coroner.

Newborn screening is not enough, however. We need to know how to prevent congenital heart defects and in order to do that we have to find out how they happen. Research needs to be funded. With the community that has formed in part to the accessibility from the internet, genetic links should be able to be established along with environmental and nutritional clues.

We can not stop with screening, we have to press on and move further. We have to look at the future. The survivors today will have children tomorrow and those children will need answers.

Tuesday, January 08, 2013

Annual CHD check up!

Today I went to my cardiologist, Dr. Hermo at Children's Hearts in Nashville.  We got there a little early, but I didn't mind. I knew mom needed to allow time for traffic and everything since Nashville can be crazy at times.

My oldest sister came with this time, but she pretty much stayed quiet. I think she just wanted to get out of the house. And she sure did not want to get caught in a picture.

Anyhow, we ended up getting there about thirty minutes early which I guess is better than being late. That was fine with me, I brought my LEGO Ninjago: Character Encyclopedia with me plus there was the fish tank and a few toys there to play with. Which, as mom skillfully captured, I had to fix the blocks. Can you believe somebody had mixed the colors up? I of course had to put them where they belonged.

 Once we were taken back to the exam room we had to wait a few more minutes, but I was able to humor myself there too.

So, for review... At a week of age I had a subclavian flap repair for CoArctation of the Aorta and to take care of the patent ductus arteriosis. In addition to that my Aortic Valve is bicuspid with stenosis.

 There are a few things that Dr. Hermo does to make sure my heart is working well. She starts with a basic exam that involves listening to my heart and checking for my pulse in the extremities, that tickles sometimes. After that she checks my blood pressure, which was excellent (87/62). Then she uses the pulse oxymeter to measure the amount of oxygen in my blood and my heart rate which oxygen was 98% and pulse was 76, although I was wiggling my finger. I did not like the machine she used this time because it is the one that clips onto your finger and I thought it was going to pinch me.

After that, I went and got measured. I am 4ft 6in and 65lbs. Mom asked where I am hiding my weight.

Once that was done I had an EKG(?) where Dr. Hermo put 10 pads and wires on me and this machine printed out some lines. I did not like the way the pads felt. They were gooey and sticky, that made it hard to stay still for the machine to get the information it had to get.

After that I had the echocardiogram, which is an ultrasound of the heart. My aorta was checked to make sure everything looked good, which it looks beautiful! And the valve was checked to make sure there were no significant changes. Current diagnosis is mild stenosis with negligible change from last year. Treatment is to continue what we are doing and if any symptoms show up call. Other than that, we go back next year.

Praise God for another awesome year!