Stimmy Day

Summer is always a challenge.

No schedule, some schedule, no schedule, strict schedule, no schedule. It can be very difficult when you thrive on routine.

Today has been a day that I just need my own space and need to be left alone in my swing.

The soothing action of swinging helps me center myself. That and the wonderful essential oils!

Mom had already put the Balance on me. After I got upset with my brother and came back in the house, I asked for my swing. (Mom pulled it out of the attic too... that is huge! She hates the attic.)

Swing helped me calm down. After a couple minutes I asked her to bring me a pillow and put some Lavender on it.  I loved it. I rocked back and forth for about thirty minutes and calmed down.

My stimmy kind of day results in me being VERY emotional, easily upset, deep pressure seeking, and proprioceptive seeking.

This can result in me being very rough with my playmates. Mom does not let me blame my stimmy behavior for breaking the rules though. I understand. She wants me to overcome the sensory issues as much as possible and instead of making excuses on why I behave a certain way, it is better to adapt and attempt to eliminate the unwanted behavior.

It is hard. But when I am able to take a moment and chill out. It is all good.

By the way... we get our essential oils from here... doTERRA. We do not receive any retribution for sharing this link. Just being a supporter to a friend.

Sleep update, another diagnosis, and hope

The last few months have been remarkable.

In the end of January I was put on prescription medicine to help me sleep. I have had issues with sleeping pretty much all of my life. Mom would use lavender epsom salt, lavender soap, lavender laundry softener, lavender everything just to try to get me to relax enough to sleep. And up until about a year ago, the lavender would work in calming me and relaxing me in the evenings.

There were other things tried to and a bedtime schedule has always been a must.

As I said in the end of January I was given prescription medicine. It worked. I would sleep. Apparently, from nine years of not sleeping well, the ability to sleep all night made me very well rested and all of my active behaviors became aggravated. Aggravated as in I became less focused, hyper, and messier. This resulted in another medication a few weeks later.

While the Sensory Processing Disorder is quite evident, I gained another diagnosis.

It appears that while normally when a child is given a sleep medicine, the hyper-ness and unfocus will go away along with the headaches. Obviously I am not normal. Ha!

The other medicine helped a lot during school hours with a lot of my existing and newer problems. I was able to hold it together at school. Once I got home though I was very easy to get upset and moody.

So... for the summer, I am off of the daytime med completely and only take the sleep med when needed.

Meanwhile, mom has found some essential oils and they are helping. In the past when mom used Lavender everything, she tried essential oils from a couple brands and they would work for a little while and then stop working. We have finally found a Lavender that works and has been working continuously for a few months now. The brand is doTERRA. Mom has been AMAZED at the quality of the oils.

In addition to the Lavender at night, I am also using Balance during the day. And for the most part we see a big difference. The best part about the oils is that they are all natural, which means they are a lot safer for my heart than the prescriptions. Although, we do still have to watch how I react.

Help me support others with heart disease!

I have been participating in the Jump Rope For Heart campaign at school. My donation page is http://jumphoopsgsa.kintera.org/bensbrokenheart

As we have learned about why we need to take care of our hearts, I developed a passion to support Jump Rope For Heart.

We have been taught that it is important to stay active and exercise so that our heart muscle is strong. We have also been taught that we have to eat healthy and stay away from the junk food. (Mom already tries to do that with me.)

For those that follow my blog, you know that I am a Congenital Heart Defect Warrior. At one week of age I had Coaractation of the Aorta repaired and since then have been monitored for a Bicuspid Aortic Valve with Stenosis. I am doing well as long as I exercise and eat healthy. I have met other children that have similar CHDs and they have had to have more surgeries or are weak and sick.

I am blessed, so that means I need to advocate for others.

We have to turn in our Sponsor Form Friday morning (February 7th) and I know I am late getting this out, but I also know that you care about those fighting heart disease and those born with heart defects.

Thank you in advance!

Sleep, precious sleep

For those that have known me, it comes to no surprise when sleep issues are brought up. I don't sleep. Or, perhaps I should say, I do not sleep much.

Up until a few months ago, my sleep didn't really matter too much. I was getting enough rest to go to school and do my work. I was a pretty good kid with some hyperactivity and a few quirks.

Then the headaches/migraines started up again. (I say again because I had a flair last spring, but it only lasted about two weeks.)

This headache/migraine flair has been going on since the middle of November. There are a couple of ideas floating around as to why, but we started with keeping a diary. Turns out in the month of December I had 11 bad headaches. (This is not good.)

I went to the doctor yesterday. Mom pointed out the fact that I don't sleep and asked if that could have an impact of my headaches. While at the doctor's office, I was bouncing all over the place and talking a mile a minute. The doctor thinks my sleep problem may be causing other issues with me, based on my behavior.

So, starting last night, I am on a tight regimen at bed time in order to get me to sleep. We do realize this may be quite an adjustment, but in order to get everything else under-control, effort now will be worth it.

My new regimen is the following:
• 8:00 Bath time w/ lavender epsom salt
• 8:10 Sleep meds
• 8:20 Laying down in bed with a book or TV on quietly.
• 9:00 Lights out
Prior to my bath, my room has to be cleaned up and school work done. It worked last night. I was asleep by 8:45 and I felt so good this morning. I hope that once my schedule is set I will be feeling a lot better.

Being a SPD kid can add its own quirks to the equation to. This just means that we are grabbing hold and hanging on during this ride.

Oh, we did talk to the cardiologist about my headaches when I went for that check up two weeks ago, she is of the opinion that my headaches are not related to my heart at all.

Focus vs Chaos

Everybody can benefit from a structured environment. Even an individual that is a creative spirit needs structure in order to provide boundaries with their time and energy.

This last week has been rough. Winter break started December 20^th and we were scheduled to go back to school yesterday, January 7^th. We were unable to go back to school because of the frigid temperatures and ice on the roads, here in Tennessee it is difficult to prepare for such a cold snap when they are rare. For Benji, not only did the anticipation of going back to school get disrupted, it was also too cold to go outside and play in what little snow we had. (It was single digit temperatures for about two days.)

In addition, prior to winter break we had an ice storm come through that messed up the last week of school.

So, for Benji, structure and focus has flown out the window for a good month. Don't forget the annual heart checkup last week. There is nothing like a doctor's appointment in a different city to shake things up.

We've noticed with the chaos his sensory issues are much more prevalent. When Benji is trying to focus on something, even if it is simply trying to play a game, background noise is very distracting to him and it gets him angry. He is even sensitive to touch.

It appears that because of the chaos, Benji has become hyper-focused. Right now, as I am writing he is locked in on one of his books. Nothing is distracting him at all. The cat (Neko-chan) that thinks he is a lapdog decided to sit on him and Benji just ignored him. Yet, if that focus did get broke, we would have a major nuclear level meltdown that SPD and ASD parents know all about.

Ahhh, the world of chaos.

We much prefer focus. When the structure of day to day living is somewhat predictable, the chaos is minimized and focus increases. Structure and schedules. Boundaries. All kids need it, especially kids with sensory issues and focus problems. This includes children with hyperactivity.

There has to be rules. There has to be some predictability. Get spontaneous in the activity but predictable in the activity time.

New Year Refocus

The last year or so has been an unfocused jumble. I have not stuck to a routine like I should and it has shown.

It does not matter what label the doctors put on me or whether I am considered to have issues. First and foremost, I am me. God made me just the way I am.

What my family knows is that I need structure and I need to learn discipline. Along with that, I need to refocus my exercise and dietary needs. When looking at what needs to be done written in black and white, the realization is that this will not be a small task. Fixing my diet will not be that hard because we haven’t strayed too far, the problem areas are the exercise and structure.

I was in Tae Kwon Do, but I quit last year. I had some problems I needed to work through and now I don’t want to go back just yet. So, we need to find something else to replace that structure and exercise.

As far as my health, my heart is stable. I have a bicuspid aortic valve with stenosis. Right now it is considered mild stenosis. This is nothing short of a miracle considering after the surgery for my coarctation we were told I would probably have to have at least an ablation by the time I was two.  

Dietary wise, I am hypoglycemic and my body does not process any artificial sugars. This means all natural for me. Plus, I have a few interesting allergies and sensitivities that make life interesting. Lactose intolerance, red and yellow dye allergies, and the list gets odder from there.

Here is to a refocused new year!