Archives for posts with tag: School

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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I cannot believe it is school time. I know I have said it before but I still feel I need to say it again.

But Michael is starting school in one week. And Elizabeth? She starts the next part of her journey after high school, in three days.

So as I have been organizing school supplies and back-to-school clothes, I have been replaying the memories of Summer in my head.

I see the good things we did.

The fun things we did.

The new things Elizabeth did.

The fun things Elizabeth did.

I am using these last few days to kind of catalog the memories of our Summer.

One great part of the summer was our vacation. We had the most wonderful time together. We always do, but what separated this year from years before, was how organized, calm and mature Elizabeth was the whole time.

Trust me, those who are raising a child with special needs, know that to see maturity and a sense of calm, is a really huge thing.

There were years that it was a struggle for Elizabeth to go on a trip, let alone, relax and have fun.

But this year was her best trip yet. And was pretty great! Wonderful, actually.

So I am categorizing these memories.

I do it for the sake of my own heart. I want to remember them all. To hold them dear and to make sure I never forget.

And this brings me to the thing I have been thinking about this week.

That there are many times we need to simply enjoy the successes.

That we need to take a moment, just a moment, to REALLY see the good things that occurred.

Because Sometimes:

We know we are seeing growth.

We know we are hearing new words.

We know we are seeing new things attempted.

But do we really take the time to see them?

For those who are raising a special needs child, the littlest of successes can make our hearts soar for a long time. For example, I can remember one summer when Elizabeth pretended to have a tea party in the baby pool of our swim club. She was about four years old. To others, it was something that their child simply did. The other moms would nod, take the cup of “tea” and smile. But it was so different for me, I was smiling ear to ear, and I relished watching Elizabeth perform each task. For me, I wanted to get on the microphone at the pool and announce to everyone “Elizabeth wants to have a tea party and she is

doing it! By herself!”

The thing is, even if I had done that, so many of the other moms there would not have understood. Because unless your child has special needs, you really and truly cannot.

But I watched her with rapt attention as she

-Poured the tea

-Pretended to add sugar

-Pretended it was hot and she waited to “drink” it.

I was thrilled watching her do this! And my heart soared at the imaginative play I was seeing. I held onto this memory because at this point in her life, most things were pretty hard work for her.

So it is the little things we hold onto.

So, if I can offer, let yourself really see.

And take those memories and tuck them tightly in so they will be remembered. They can be a strength to you when you are low. When things are NOT going well.

And they are there for you to see that all the hard work is so very worth it.

So as I go back to my thinking, and remembering,

I hope that you will allow yourself the same gift.

To really see.

I wish everyone a peaceful week.

Michele

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