Life and a family illness has certainly stepped into my best laid plans lately.  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 everyone’s life.    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’m sure you understand!

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.

Michele Gianetti author of Elizabeth Believes in Herself

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We are working our way into another conference night…the last one of the year. It is a big one because what is talked about here and how the goals are being met sort of set the stage for the IEP meeting and goals for the following school year. So, any concerns you have, goals you wish were achieved or changes you desire are all points to cover.

The way that the school calendar works, in my opinion, is that by the time you get to February, the year is pretty much done. This is in terms of big changes that you might request for your child. Such as testing to be done, an IEP meeting to review and implement changes.

Why?

Because this all takes time. Time to fill out the paperwork, to wait for the testing to start, time for the tests to be fully completed and then the time to schedule and attend the meeting to discuss the results, THEN the implementing begins.

For an IEP meeting? This takes time to schedule, plan for, attend, make changes, approve changes and then implement.

Now add in Spring break, and the fact that schools end somewhere in late May to early June and you can see that any REAL changes may not take root until the following year.

This doesn’t mean those changes are not requested or that you don’t ask for those meeting. NO! You absolutely do. But with the understanding of how it all may play out.

But in the interim time, the advocacy you do for your child will make the difference in the way the rest of the year will look for your child and their goals.

This is why explaining, talking, explaining and repeat…is okay to do.

Often. (And don’t feel bad doing it)

I have learned on this journey with Elizabeth.

It is just like sharing their IEP narrative, if you have one, except you are doing it verbally. ( and okay, sometimes, I give some written things too!)

Explain and talk!

For me,

1.I would explain Elizabeth again. Disorders, how they affect her and her day…all of it again.

2.How she is doing in our opinion this year. What do we really see at home or with emotions she is having from a tough school day.

3.What might need changed in school. Maybe she needs more transition time maybe a buddy to help her

4.What may be too challenging or not challenging enough. In terms of actual goals or just events in the day. Maybe gym is too challenging or maybe they aren’t including her enough.

5.What I can do at home to help both Elizabeth and the school advance her success. It helps the school so know you are part of the team and that indeed it is a TEAM effort

6. Her disorders in detail and how they are being affected by the school year stress. Not always will they know how disorders will affect our children because they may not have had them all year before.

The important thing is to have them understand your child..fully at the beginning, middle and end of the year.

And to know they can come to you with any questions or concerns right away.

It feels good to fully represent your child and who they are AND it really is critical to keep explaining.

Maybe you will be waiting for testing or changes on an IEP but there are things that we can do to help our children maximize their school day all to help them grow and achieve to the best of their abilities.

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes In Herself

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