Something to Share

As a mom to a child with Global Dyspraxia,  the challenges of breaking down skills into manageable steps is challenging. And having the same child have Sensory Processing Disorder or (SPD) makes its it extra challenging.

Dyspraxia is a motor planning disorder that makes learning and completing motor tasks very difficult.  Skills like writing, coloring, and cutting can be affected. As are those of running, riding a bike and even talking.  For those new to my site, I have more information located on it about the disorder.

SPD,  is a disorder that affects how her nervous system processing information that we take in from all our senses.  For Elizabeth, all the sensory information feels wrong or offensive to her.

We have worked so hard to have Elizabeth achieve as much independence as possible.   Like most people who have Dyspraxia, she wants to do something by herself, but can’t.  This makes her frustrated. Continue reading

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.

 

 

A Library Trip

I saw them. The young mother and her three children leaving the library. I had stopped there one morning by myself to drop off our huge load of books (my children are big readers). It is our small local branch, but really quite cozy inside.  It is our favorite one to go to.  This mom was holding a child and her older two were walking beside her.  The two older children had their little backpacks on and were weighted down with their haul from the library.  They looked so cute and quite content.  I took a look at the mom’s eyes and she looked happy and peaceful….

That scene made me think of so much….some of my thoughts went a along these lines:

- I really loved that time of life, when my children were all small, and the day was yours to do with whatever you wanted.  You know, never having to look at the clock and wonder if you missed the bus or if you had to hurry to get your child off the bus…the day was yours.

- I loved being able to run to the library, to the park, to get ice cream ….I simply loved and still love my time with my children.

- I could go back and re-start my family again I would do it in a second.

- Life goes by so quickly

- Life was so hard when Elizabeth was that age

- I have not seen those relaxed eyes looking back at me in the mirror since before Elizabeth was born…WOW did I just think that?

- Yes! yes I did

- I can’t believe I just thought that!!!

- It is true, so why do I feel bad thinking it??….

After this mental ping-pong game I then found myself reflecting…

Quite a few memories of our early excursions with Elizabeth float through my brain at this point.  I remember the tears and fear in her eyes.  The times when going to the park was too much for her to handle.  The looks from other moms and people, who had never seen a child like Elizabeth before….It had been hard….it has been so very much work.

“Why do I do this to myself…why do I allow myself to go down that particular “Memory Lane?” I think to myself….  It is not like it is fun or helpful or anything other than anxiety provoking….but still there I was…firmly walking down the memory path, when all I wanted was to return some books.

I wonder if other parents of special needs children do this?  See the parent who is simply content…and wonder…..just for a moment…..what it would be like….what it COULD be like…to feel that calm….that feeling of lack of concern or worry about meltdowns or overloads…to walk to the car after the library and know all is well.  That there are no therapy appointments to go to, or sensory diets to complete at home….just a car ride home to enjoy.

I don’t wonder often but sometimes I do.   Maybe it is my mood of the day or maybe Elizabeth is not having a good day or maybe it is just that time when I feel tired….those are the times I do wonder or think.

Back to the parking lot….

I kind of busied myself at this point getting my books out of my car and when I looked up, they were gone.  Just the back of their van was visible and it got smaller and then was gone completely. And just like that, “Memory Lane” was gone…  I closed the trunk of my car, hoisted the bag of books on my shoulder and went into the library by myself.  I kind of felt tired now, almost like I had had a bit too hard of a workout.

I know I am not the same person I was before Elizabeth was born, I know I will probably never be that carefree person that I was….but on my way in I allowed myself to think that in so many ways I am a better, stronger more determined and focused person than most people my age.

That no matter what, my daughter is worth EVERY worry and effort….that not giving up on her, fighting for  her may be harder work than most will know.  But all of it is worth it when you think that you are giving your child the best chances in life.

By the time I came out of the library, I was feeling more settled. There was no one in the parking lot and considering how hard this memory lane thing is.  I am not going to lie..I was quite relieved!

We are all on these unique journeys, filled with so many emotions each and everyday.  Who knew a simple trip to the library could come with all these thoughts?!  Wishing you peace this week.

 

 

 

 

 

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