We have used notebooks and charts.

Cards and reminders.

Binders and spiral notebooks.

All in have been used and played a part in how we have taught and reinforced life skills, organization skills and other skills needed at the time (like what to pack a bag for volunteering, which she doesn’t do right now) This included the steps to complete the task or skill.

We began this when Elizabeth was in late middle school and continued it since then. They have changed alot but they are still there.

For those who don’t know, my daughter Elizabeth has special needs. She has global dyspraxia and sensory processing disorder (SPD) both disorders affect her life each and every day and she started therapy at the age of 2.5 years old.

And as she has gotten older, she is 25years old now, the life skills and job skills have gotten much more complicated. As has the need for her safety in a world that has gotten a bit crazy.

So instead of having a notebook in the kitchen for cooking and one in the den for work and a third in her room. We knew it was time to put them ALL on her phone.

We found an app that works well for this. One that she can navigate pretty well.

So all of the needed and necessary information and step by step on how to do tasks is RIGHT there for her. And since the entire universe is on their phones, she looks quite appropriate. We have the information backed up on paper but for now, it is “Elizabeth, it is on your phone, click in.” that gets said.

So going back to the start of this blog, I said that we put down the other skills that Elizabeth needed at the time. The question that needs asked is Why did we know what other skills she needed?

Because we kept the conversation/communication going about what is that you like to do Elizabeth? And then we offered her some choices to try. Then others and still others.

Until it was in her early high school years that she said just what her interests were that helped us make plans for her employment and her future.

And we kept those interests of hers and her goals and channeled work experiences for her that would grow the skills needed to be strongly employable.

We did not wait until the school discussed this with us or until they planned the job experiences for her.

We tried to be proactive so that Elizabeth got a real say in what she wanted to do in her life and even if she changed her mind, we would adjust. I mean what neurotypical young adult doesn’t pick and choose and change their mind for their future? Why should she be any different.

So that is what we did.

But my advice to all is to start that process of talking/communicating EARLY!

Start sharing about jobs that are out there and what the person actually does who has this job.

Show pictures and talk.

When you go somewhere, explain to them what job they are seeing.

Start your own transition planning early. It will be a way, way easier process than waiting until later. and your child will have had experiences that help them see what jobs are really out there and what they might like to try to do.

After all, it is something they should have a part in picking.

And why not have time on your side?

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes In Herself

 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