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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