Tuesday, March 25, 2014

Why I Hate Wednesday

You may have noticed, I kinda post about (ok, whine about) the fact that I hate Wednesday a lot. Like seriously, dread, loathe, hate Wednesday. I probably post this at least once every Wednesday on the Facebook page, and my personal page, and to whomever I speak to that day, and... well, you get the picture. I dislike Wednesday with a burning passion, but have I ever explained why?

I hate Wednesday because to me it is a broken promise, it was supposed to be the BEST day, it is supposed to be the day I look forward to only slightly less than Friday. It's supposed to be the day of the week I get to spend an entire half-day with my 12 year old, but it's not.

It all started when he was in fifth grade and he was really struggling, one blow up lead to another which lead to another which landed us at the NeuroBehavioral Outpatient Unit (NBU) at Kennedy Krieger. This program is no joke, it can be as intense as all day every day for a month or less intense with two 2-hour appointments per week. We did the 2x2 option, more accurately it was chosen for us. One of those days every week was Wednesday. I would take Cameron out of school early to drive an hour, go and do our work in the clinic for 2 hours then drive an hour home. It was physically and emotionally exhausting for both of us. The other day of the week floated for whenever we could fit it in but the constant was Wednesday, we were in clinic every Wednesday for 8 months.

Fast forward, he "graduates" Elementary School and is headed to Middle School! We fought for and got a non-public placement at a Kennedy Krieger School and the consistency is awesome. Every Wednesday this school has an early dismissal which means that we can attend our NBU appointments without having to take time away from school. The appointments are still exhausting but at least he isn't missing instruction time.

Then he "graduates" from NBU!!! Our Wednesdays are FREE!!!!!!  I decide that we will start having "US" time, we will work on some of those real life skills. We will go to the mall and shop for silly tee shirts, we will make a grocery list and hit the store, we will go get ice cream or visit the library or just go home and watch TV together. But that's not what happened.

Research shows that executive functioning, behavior and attention can be helped with NeuroFeedback. The only appointment available? Wednesday.

Neurobehavioral Outpatient Unit has two years of follow-up treatments in the home to help "tweak" the behavior system. The only day the doctor is in our area? Wednesday.

My day to day schedule is a precarious balance between bus pick up and drop off and taking my younger son to and from school. The morning works in my favor but the afternoon is so tight that if I am delayed for any reason or if the bus is early (rare) then there is no one at home to get Cameron off the bus. Wednesdays again seem like a beacon of calm, there is no rushing to beat the bus because he doesn't take the bus on Wednesdays! Except it's not because instead we are rushing back to our hometown because after the early pick-up and NeuroFeedback appointment, we run the risk of being late to pick up my 9 year old from school on time.

As soon as I get home, with both boys, and take a breath... The person from the Neurobehavioral Outpatient Unit arrives for an hour+ appointment where I feel like a complete failure for forgetting to go over the rules before we did our assessment yesterday or I failed to do a BRT session before bed last night.

The problem with Wednesdays is that all of these things are important, so is spending time with my son and so is doing the dishes and laundry. On the days where it is non-stop from bus pick up to bedtime there is no time to prioritize which part of the day holds the most importance. It all feels important.

So I hate Wednesdays. Really, truly, loathe Wednesdays. I want to cancel our NeuroFeedback appointments but he is doing excellent and making progress and I don't want to take that away from him until he has completed at least the initial appointments. I want to tell NBU to go away but we lost 8 months of Wednesdays (plus another day) and to not complete the full program would waste all of the hard work he completed in that office.

This won't go on forever, it can't. The initial Neurofeedback appointments stop around 20 sessions and I am hopeful that we will get the NBU plan in place comfortably and we may be able to drop down to every other week visits. Then, hopefully, you will find Cam and I looking for silly tee shirts at the mall and picking up ingredients for brownies at the grocery store and Wednesday will be the BEST day of the week... like it should be!

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