Monday, August 18, 2014

The power of routine - and electricity!

Ahh... routine.  From the outside looking in, it may not appear that we have one, yet we do. Not only do we have one, we depend on it like oxygen to breathe some days.

We understand that change happens in our routine but it usually comes with explanation and understanding. When it doesn't, it's a quick reminder of how different our lives are as we can't easily just go with the flow of what life throws at us.  Today was a beautiful example of that.

And by "beautiful" I mean the "slap in the face obnoxious reality" that is our life.

Today was the first day of school.  Allison was the first awake (slight concern on my part that it indicated the end of the world but turns out she was just excited) and nicely woke up myself and Parker.  We had a wonderful, quiet breakfast (minus the cats fighting), were dressed and ready 20 minutes early.  If only every morning went this well... I'd totally toss my name in for the Mother of the Year award!

Drop offs went pretty smoothly and  I quickly settled into my work day.  After adjusting to the extreme quiet in my house, I was able to easily focus on work with only the occasional twinge of worry about the kids.  I knew if I was needed my phone would light up, there would be no hesitation - the staff would reach out to me.

There was an early 2:15 dismissal today for the first day, which - is fine.  It's the after school routine that is critical, especially today.  Today starts off as a reminder of what to expect from now until the end of May (or mid - June depending on our snowfall!).  Today was the reminder that while we are making the big shift back to school, we will easily slide right back into our after school routine.  The same routine we have done for EVER.  It's consistent.  It's reassuring.  It's decompressing.  It's important.  Especially today.  Today is the first day which means it sets the course for the entire year.  Today going great and reminding Parker that he can depend on our routine during the new changes to his life - priceless.

So, no,  I was not happy when at a little after 2 the power went out.  I did, what seemed natural to me, I quickly logged onto the website to be sure my bill was paid.  It was, it turns out the entire town was without power... including the schools.  Not the best way to finish up the first day but - survivable - I just needed the power to come back on before I finished picking up the kids.

I knew the odds of that were slim so I began to prepare Parker as soon as I picked him up.  I let him know that at home, just like at school, we did not have power.  On the drive to get Allison I reminded him that no power meant no lights AND no TV.  We told Allison after we picked her up so she would be prepared as well.  What I didn't think of was exactly how much of our home depended on electricity that impacted Parker's after school routine.

When Parker comes home he:
1. Turns on his inflatables.
2. Turns on the TV
3. Scans the recorded program list from the day to be sure nothing was missed.
4. Has a super crunchy snack while watching his shows and unwinds from the day.

We don't talk during this time.  It's his time to unwind.  I go back to work, Allison has her own routine.  This works amazingly for us.

So, here is the importance of Power in our lives... our entire routine depends on it.
If Parker can't do step 1, he'll attempt step 2.
If he can't do step 1 or 2 he'll obsess on it until it happens - or we pass out from exhaustion, whichever comes first.
We never make it to 4 which is the most critical step.  While a crunchy snack may sound like not a big deal - when you are 15 and in sensory overload needing to decompress from your day -- a crunchy snack is essential to regulating your body back down to calm.

While I prepared Parker for no TV and no lights, I never thought about the inflatables.  My heart sank when we walked in and he immediately tried to plug them in. He was very upset that they would not work.  A tear or two streamed down his face while he said, "Come on, buddies, you can do it... get up already" ... but, no luck.

I tried to explain they could not work without power.  Something Parker would understand if  there was a thunderstorm or bad snow storm but for a perfectly beautiful sunny day to have no power - and for him to come home to that, not be here when it went out... he couldn't wrap his mind around that.

After 20 minutes and multiple outlet attempts he moved onto the TV.  He knew the TV channels wouldn't work but didn't understand why he couldn't watch a DVD like we do when we lose our satellite in a storm.  When he finally accepted he couldn't watch it on the TV there was a whole different explanation as to why I couldn't eject the DVD for him to watch on the laptop. That went exhaustingly well...

By now I had messaged my boss, extending my lunch hour, knowing we were paralyzed until I could help him find something that would work.  We had options... lots of them.  Options that he loves.  It's just that none of them are part of our routine.  So, in the world of Fragile X... they really aren't options at all.

He didn't want to swim.  He didn't want to play anything on his iPad.  He didn't want to watch Netflix.  He didn't want to go to the park, for a drive or anywhere. He didn't want to lay down or snuggle or even have a tickle war.  He didn't want to play Uno. He didn't want to go through his backpack.  It wasn't time.  He wanted - and more importantly - his body needed - his routine. 

Without steps 1 & 2, I couldn't get him to step 4 and he really needed step 4.  His body and his mind needed step 4 to get us onto the rest of our evening routine that would include going through his backpack, talking about his day and planning for tomorrow.  I couldn't jump ahead in our routine either or change the positions of each thing, especially with no idea how long we'd be without power.  I couldn't afford to make promises I couldn't keep at this moment. (or really ever).

While I was working through this with him, Allison had taken my suggestion to do her home work early just in case we were living by candlelight this evening.  For Allison, this change in routine was easy.  She understood what was going on and quickly sat down to begin her homework while I worked with her brother.

As I was trying to get Parker interested in one of his iPad games (aka, I was buying him tokens), I was glancing through my emails from work when I noticed a notification from Facebook that I had an email.  Not expecting anything out of the ordinary, I switch over and opened what would take me from the quiet sing songy mom who was helping her son to the mom who felt judged, alone and outraged.

I had posted on Facebook that I really needed the power to come back on before I got my little guy home.  Nothing horribly whiny just a bit of frustration knowing what this change of routine would do to him.  I wasn't alone.  I saw many people post about their frustration.  And a handful of people suggesting people stop complaining and start interacting with their kids - taking advantage of this time together. I was really indifferent to any of the posts until this email came through which read:

"Hi Holly, 

I noticed your status update about no power.  Here's a thought, try talking to Parker and Allison and spending time with them instead of putting them in front of the TV.  You might learn something about their day."

There are times I feel the need to justify my children's disabilities, explain and most of all educate.  I do this frequently.  I am really adamant  about raising awareness and people understanding Fragile X and how it affects my children.  And then there are times I have learned to stop and walk away - that does not come naturally for me.  It's definitely a learned behavior ;-)   This was one of those stop, bite tongue and walk away times.

While it frustrates me to no end that someone would find sending an email like this appropriate I also know that their mind is made up.  They believe they understand and can easily solve whatever has come my way.  Then there is the reality that is our life.

The reality that something this huge sends my son into a tail spin.  The reality that I am focusing all of my energy on helping him through this so that he keeps control of his body because the last thing I want is more bruises.  The last thing HE wants is to physically lash out.  This takes all WE have to keep things happy and moving forward and working through the change.  Because we are not a normal family.  Change is exceptionally hard on Parker.  Especially change he doesn't understand.  THAT is our normal.

You may not understand our routine but that doesn't mean that it isn't the right routine for us. If you think that I don't talk to or spend time with my children... well that's just laughable :-)  It honestly doesn't need anything more than my laughter.  Laughter is good so I thank you for that opportunity to really laugh today.

More importantly, I'd just like to send a friendly reminder that what is not a big deal to some is excruciatingly difficult to others. It takes everything Parker has to hold himself together and make it through the long school day.  When he comes home his mind and body get a break.  They need a break.  After they've had it, we move on and do many of the things "normal" families probably do too.

It's not always easy being the "different" family yet, honestly, this is the only life we know so it's easy for me to forget how different we are.  I understand, I see things each day that remind me of how different our lives are.  Sometimes it doesn't bother me, sometimes it's crushing.  Either way - I'm yet to meet anyone who has a child with a disability who needs a reminder, no matter how "well intended" that their lives are so drastically different.  Sometimes this will come with frustration... sometimes, I will put out a plea for the power to be restored before our routine is disrupted.  I am, honestly, human after all.  When I (or others do) instead of questioning our parenting trust that there might just be more to the plea than you are aware of.

Just - support each other.  Suggestions are great and often helpful - and different from the "advice" I was given.  Not every detail needs to be given for that to happen.  Embrace that sometimes frustration happens and instead of offering "advice" maybe just let them know you feel for them or hope with them for the situation to change.  So much more can happen with a positive response than a negative one.

By the way... as soon as the power came back on - so did Parker's smile... and inflatables.  THIS is the power of routine - and electricity. 

Sometimes I enjoy the differences in my home :-)

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