Summertime, Summertime, Summertime

This is my first post in a while due to the recent death of my beloved Dad and then following immediately on its heels was the start of summer.  Wow, it was quite the emotional and exhausting Spring.

I think I am just getting my “sea-legs” for Summer.   We started the summer with a biking camp for Elizabeth.  It was from the “iCan Shine” company.  That was five days of watching Elizabeth go round and round in a gym on a special bike.  The last day was GREAT, she went outside on her own bike and RODE IT.  I was watching her circle the gym for an hour and 15 minutes each day thinking so many things.  Perhaps you can relate?

1. I AM SO PROUD OF HER –  I think this so often, but then once in a while I REALLY think it and this was one of those times.  Imagine having to work so hard each day for all the things you want to do and still smiling and laughing.  Elizabeth is a very pleasant and warm young lady.  I am not so sure, I could be that person if I had to face all she does each day.

2. I WANT THE WORLD FOR HER-  Ever since Elizabeth was a young child, I hoped the world would open up for her, that she would have all the opportunities open to her, that she could follow her interests  and be given every chance possible.  Our children work so hard at just plain life, that to be denied any opportunity would be heartbreaking.

3. I WANT THE WORLD TO UNDERSTAND HER-  After having advocated for Elizabeth for so long, I truly want her disorders to be understood and therefore SHE would be understood  I do not mind having to explain how Elizabeth “works” to any and all who ask or are going to work with her, but to have them know SOMETHING about her disorders would be fantastic.  Just think how nice that would feel to go into a meeting/classroom and be met with questions about how your child shows signs of the disorder as opposed to ” I am sorry, but WHAT does you child have?”

4. I PRAY FOR PATIENCE AND CLARITY OF THOUGHT-  There are times when I think, “We have been at this marathon for over 16 years”  I know I want the best for her but like all parents of special needs children know, patience can wear thin.  I pray for the clarity to know when I need a break, a moment, a prayer.  I pray I can close my mouth when I want to correct, I pray I can open it when I want to compliment and I pray I know when those times are.

5.  I LOVE THIS CHILD SO MUCH- There she was, smiling on that bike, helmet on, squishing down that mass of curls and she was happy.  I would move any mountain for her….I believe in this child.  Period.  And as she was peddling away on this bike outside, I look up in the sky to see the beautiful eagle soaring above us.  The same eagle that has been above us since my Dad died.  We see if often and regularly.  I feel it is my Dad telling us he is okay and that he is with us.  My Dad had a very special place in his heart for Elizabeth.  He called her his “penny from heaven”  She remembers this with a smile.

So I looked up in the sky to see this eagle….I was happy to see it there.   “See Dad” I thought.  “She’s doing pretty well, help us keep and eye on her”

We ended camp that day, and began the next part of summer.  I am happy to say Elizabeth is enjoying the relaxed pace of summer and is laughing and happy,.

I am getting there…..I know we have an amazing guardian angel to watch over us.

Wishing you all a peaceful week.

 

 

 

 

 

It Was Just a Bandaid

It has been forever since I have written a new post.  Life and a family illness has certainly stepped into my best laid plans.  I am sure we all know about that.  Just when you think you have things in order….you don’t.

It is that control thing again.  For me anyway, to be able to put something in order, or figure it out or organize something, makes me feel in control…of at least something.

But control can be a tricky thing.  If you try to control things and for a while all is going your way… when all is right with the world and you are just humming along,  you sort of feel empowered.  You kind of have that feeling like “Yep, I can relax, I have put things in order…so I am good”   If you get too much of this feeling, when things get complicated or out of order, it feels worse than ever and takes you longer to recover from the skid.

If you try to control things and you just CANNOT get things to go your way a certain level of frustration and then for me anger starts.  Kind of like asking yourself  “Why can’t I get anything to go the way I want”  At times like these, it seems hard to have one thing in order let alone enough to feel calm at all.

I bring up the control thing because it is my struggle.And again if I am being honest…the thing I wish to have in my control the most is all the goes on with Elizabeth and her disorders of dyspraxia and Sensory Processing Disorder.

I think because so early on in our journey with Elizabeth, I never knew how she was going to act in public or react to a situation or person that I tried to control so many variables that I got used to doing that.  We never went anywhere without my thinking through so many things…the where, the when, the what…and on and on of every situation.   It seemed if I did not do this, we would have a bad experience.  So I got conditioned to try to be in control.

As Elizabeth has gotten older, her world has become quite complex….I mean, come on, have you ever tried to follow the subtle nuances of the typical high schooler’s life.  Let alone their conversations.   As such, I have had to learn to lessen my hold on this control.   It is NOT easy, especially is you are me.  I am still working on this lesson

But life teaches us these lessons again and again whether we want them to or not.

Let me share the aluminum foil story…..

Elizabeth is walking around with a rather large bandaid on her finger today.  A bandaid to cover the nice slice she did to her finger grabbing the aluminum foil.  The aluminum foil I asked her to get to cover the dish before we put it in the oven.  This dish that was our dinner that night.  I asked her to get the aluminum foil.  and she grabbed it but she grabbed the sharp edge and …yep you know the rest.

Why does that nicely bandaged finger bring me to thoughts of control? Because, I again tried to remember everything when we were cooking.  How to break down the steps so she would succeed in doing them ( for her dyspraxia)  How to encourage her to touch this messy bowl to finish the recipe. ( ode to her SPD).   How to have her put something into the oven without burning herself.( just plain safety here) …need I go on?

I guess what I am saying here is…even though I was so busy trying to control variables …I can’t control them all….none of us can.  I am sure I have had these same epiphany many times before but for some reason this really hit home this time.

I watched Elizabeth deal with the blood, the pressure on her cut ( it was a bit deep too) and then the bandaid ( a BIG one).  She was absolutely great about the whole thing.  Because she was so great, it got me to think how far she has come, and that even though I try, So many things are simply not controllable.  I want to use this experience to help me remember this fact….to remember it when I want to fix her world…to remember it when she heads into a store for the first time….to remember it when I feel nervous.   I want to remember it period.

I need to be there for Elizabeth when something happens that I could not control instead of mentally chastising myself for letting this one slip through my layer of control.

I plan on using this experience to help me.  I offer it out to you to as well.

It really was just a bandaid on a finger but to me so much more.

I hope these thoughts help someone dealing with their own control.

I wish you a peaceful week.

 

 

SPD And Dyspraxia- A Marathon Not A Sprint

As we are in the middle of the month of October or Sensory Processing Awareness month, I wanted to post a bit about something everyone on this journey needs to know.

I can remember the day when I learned it…..I can remember that it was NOT an easy thing to accept….and I can remember the feeling of understanding once I did.  and it is that this path we are on….this journey…our road…is a marathon, not a sprint.  That SPD and its dyspraxic component are part of your child forever.   That there will not be a day that it is simply gone.  We need to know this to realize all we do for our children will make a huge wonderful difference in their lives, but that through their lives SPD and dypsraxia  will play a role. Continue reading