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Sometimes I know that I want to simply be her mom.

I want to make all the necessary plans for Elizabeth, put all the things that need done in order for her for success. Be it for a new thing she is trying or even for an old thing that we have not done in a while, sometimes I want to do the work…….and then, I want to be her mom and trust all will be well.

Now that is what I want, but it differs so greatly from what actually is.

As I have found on this journey, the advocacy and work does not stop, but it does not stop my wish to just be her mom.

Every new skill or new experience requires work to plan, explain and teach.

While every new person who enters the journey requires that you become an advocate—again.

It is this last thought in mind, that hits home pretty strongly to me this past month or so.

Because Elizabeth has moved on from high school to a college program that accepts her IEP.

The program is truly amazing, it is giving her the college experience in so many ways, while still keeping a focus on the IEP (Individualized Education Program) goals we have for her currently. They have wonderful buddy/coaches to work with them. These buddies are with them throughout the day and have become their friends.

I am so happy to see Elizabeth loving being on campus, and loving hanging out with other students as well as her buddies. So there is quite a lot of positives going on here!

So after a couple of weeks in ….I started to entertain the thought that I could do the thing I mentioned before.. I mean all the hard work had been done. Right? The paperwork was done, the school records were sent, the IEP was signed, the buddies were met, and the times were set.

Done! Right?

Wrong!

It was not a big thing at first. It was actually a small problem. But each day as it was not addressed the anxiety associated with it grew. So it became bigger and bigger. Until, and thank you perseveration, it was something we talked about a lot of the afternoon.

Its name was math. Simple addition math. Something we have seen and done countless times in her life. And she has hated it every single time. So because we know she knows why she is adding, as well as the concepts associated with it. She uses a calculator with wonderful success.

Until the buddies banned the calculators for use with the budgeting skills they were working on. We did not know this initially, but we could see something was not right. So the loss of the calculator started the anxiety off, then came the dyscalculia in full force, then the anxiety ramped up, then the frustration was there in the buddies. They wrote notes to me asking why Elizabeth was acting this way and why she was nervous.

There was more work to do. So I got off of my imaginary lounge chair, with my imaginary iced tea and my imaginary music playing and became the advocate again.

It was not the math that made her the most anxious, it was that the buddies did not understand how or why she was feeling the way she did ( her words)

When I talked to them, I explained how Dyspraxia and SPD (Sensory Processing Disorder) affect Elizabeth specifically. The buddies read the IEP,  but there is a huge difference between reading and understanding.

 

They were so open to my words and her feelings that I knew we would right this ship quickly this time. And happily, we did.

Elizabeth is using a neon pink calculator now. The reasoning for why she is doing the simple math has been explained. She knows why she is doing what she is doing.

She is back at DEFCON 1.

So my thought this week is that, it is okay to know our work will be there. In my opinion, it is okay to know we may not relax and be “mom” quite the way others many get to. ( I mentally folded up the lawn chair) but we will still have our times and our ways to relax. Like right now, I am mentally very peaceful as I know that all who are working with her “get” how she works, and Elizabeth is happy and content.

And I know I can hang up my advocacy hat for the time being, even if it is only an arm’s length away.

I wish everyone a peaceful week.

Michele

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Many years ago we started behavior modification with Elizabeth.

Elizabeth and I had talked about why we were doing this.

It was to help her remember important things that we wanted her to remember to do each day. The list could include things like:

Did you put your dishes in the sink?

Did you remember to hang up your towel in the bathroom?

Did you tell mom about your day in sentences?

And sometimes they included:

Did you use your emotion’s chart to talk and not yell?

Did you act appropriately in school?

So you kind of get the idea. It was a way to reinforce good thinking and behavior and shape away the behaviors that were not desired. We used to talk each night and made a chart with the list of the above questions on it.

But we added something else to the conversation. For every positive thing Elizabeth did she would be given a bead. At the end of the daily chat, she would string the beads on a piece of plastic string ( more substantial to hold). This would work her fine motor skills, eye-hand coordination, and focus. The reward of the efforts was a nice long necklace.

We would then count them each night. So we would work on counting. Sometimes by 2’s then 5’s then 10’s

And when she got to an agreed upon number, she would pick a reward coupon.

These coupons were made by the two of us and included things like:

-Extra TV

-Extra dessert

– A trip to the video store.

Pretty much anything that is valued at the time.

We did this behavioral modification routine for a long, long time. She loved it and it helped her hand work, talking and behavior. It was a big success for her.

So with that story and its goals in mind, I came across this great little toy that could help with the same kind of system. At least in my opinion, because the second I saw it, I could picture Elizabeth working with it each night. And using it to reach our goals.

It is called  

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