Yes, I understand. The code word is…………

Yes, We did put the code in but my daughter put in the code for our old security system, not this current one.

Yes, we are all fine.

This is a small excerpt from my actual conversation with the nice policeman at 8:15 am this past Saturday morning.

Three guesses who this conversation was about?

And it all started with Elizabeth heading out to the garage to get an iced tea from the refrigerator out there. Which typically doesn’t usually require disarming the security system but because it was early in the morning, it did.

And so began the fun of the morning.

So after the nice policeman left, and we had all calmed back down from the fun of the 1,000,000 decibel alarm going off, Elizabeth and I had a nice talk about:

Letting us know when there is a problem/not just remaining motionless: This is so related to her disorder of Dyspraxia. It is not that she doesn’t KNOW what to do, it is the initiation of the action that is the struggle for dyspraxics. Since her Dyspraxia makes it hard for her to act on something (especially when she is anxious), we have taught her about having a “Go to” person. Who is the person she will “Go-to” when needed. But this did not happen.

What to do if this happens again: As we all know, life is full of teachable moments and for those who have a child with special needs there are even more of those moments. So she and I talked this through as well.

Why did you not tell us that it started going off: I was in the basement with earbuds in and on an exercise machine. So, I was of no use, but her dad and brother were upstairs getting ready with music on. So the couldn’t hear the initial alarm beep either. Because after the initial beep comes the million decibel alarm. So there is some time to catch this.

So after talking through all the above, Elizabeth left for work and I was left with a heavy heart. In fact, my beloved friend (neighbor across the street) who actually called us to see if we were all okay when she heard our house alarm go off, was the one I cried to when I heard her voice. For some reason certain things hit me so hard. And I start down the rabbit hole called what will Elizabeth do if we weren’t here and what will she do when we aren’t?

UGH, it is quite the rabbit hole.

But then after I got the tears out, I started thinking that, like all things, there is a gift to this situation.

And the gift is that we need to recognize that this skill, this new code, this what do you do if/when are things that we have not worked on in a great while.

Why? I am guessing with COVID that we didn’t have to work on these as we were always together.

And now we do.

And like other skills that haven’t been done in a while, they need to be practiced again and sometimes retaught.

And that it isn’t a failure it is just that they haven’t been worked on or done in a while.

I thought about how little I actually practiced the new code with her and that saying you have a go to person but not just what that means now, in this current situation, doesn’t help enough.

It really is okay to say that sometimes the rust needs kicked off these skills and the wake up call or should I say, ALARM for us was this past Saturday.

So maybe it is reading or typing or remembering how to zip a coat. Whatever the skill, task or action that your child knew but that is now a struggle for them, try not to feel bad. Maybe see it as a rusty skill.

And nothing more. Just something that needs a little time and effort to get it working smoothly again.

I am speaking to me as much as I am speaking to you when I say this.

I wish everyone a peaceful week.

Michele Gianetti author of Elizabeth Believes in Herself

I know that for anyone who has followed our story and Elizabeth’s life you know that she and her sister are very close. They love each other very much and really “get” each other. Even with Elizabeth’s special needs, Emily got her. Through the therapy for her dyspraxia, and sensory issues (SPD), Emily got her.

I can see that when Elizabeth has one of her stressful moments, Emily becomes The Elizabeth whisperer and helps her with her emotions and then kind of lets the rest of us in on what is going on.

Or when Emily is having one of her stressful moments, Elizabeth will give her one of her big hugs, read the color of Emily’s heart and help her and us know what is going on. Such as “Emily’s heart is red, she is really mad right now about…..”

They still get on each other’s nerves, which is a normal sister, sibling thing.

But they love each other so much so when it was time for Emily to move for her residency, it was a tough tough thing. Emily had a lot of months she was in and out due to obligations for her medical school training, which was hard as well but there was a point that Elizabeth knew she was coming back.

Then came the time that Emily moved for a year and now for 3. It was a slow and big transition for us all but especially for Elizabeth.

But I am happy to say that it feels we are on the other side of the mind-numbing emotions and are hitting a bit of a stride in terms of staying connected with Emily. Such as texts, video chats etc.

And when I say stride, I mean as in the past month or so.

So good for us! Right?

Right!

Sort of, actually,

Because last Sunday I see Elizabeth hugging her brother, Michael, and sort of tearing up. I hear her say “I’m going to miss you, buddy.” and Michael responds that he will miss her too on his first day back to school as a junior, but “I will be back tomorrow night.”

I love those last words so much, but it kind of got me thinking of the time, in a mere two years, when Michael cannot make that statement to Elizabeth and how that will be for her.

UGH! is the punch in the gut feeling I got with that one.

I hate that sometimes life shows you just how much it is changing on one hand and in the same glance you can see just how much it did not on the other. By this I mean, we have and are working so hard for Elizabeth to find her path in the world and at the same time, she is STILL the one hugging the people who are moving past her to the bigger phases of their life.

It is weird, not settling and kind of hard on the heart.

I know we will continue, as we all do, to work for and with our children with special needs but sometimes life just comes by and taps you on the shoulder and hands you a bit of reality.

I feel as if sharing the story, is giving an honest image of the emotions that run around this house at any given time!

I love that my children love and enjoy each other, so the takeaway gift will be that piece. The emotions will be the things we will work with and through as time goes on.

I wish everyone a peaceful week,

Michele Gianetti author of I Believe In You

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