Friday, January 22, 2016

A "Fluting" Moment


All of this was yelled with every capitalization and exclamation point shown here. No exaggeration.


That's what Sister yelled at me yesterday right off the bus from school.

"Aaaaaaaaaaaarrrrrghhh!!!!!!!!!" along with hair pulling and stomping was Brother's response to my, "OK, it's time to go," with a smile on my face.

I just keep breathing deeply and saying to myself, "It will all be worth it in the end. They will like it, I know they will. We just have to get there."

I don't know how to explain it, but I can usually tell when my kids are just afraid to do something new as opposed to actually doing it.

If you've read my posts before you know that our children deal with hyper-arousal (or anxiety to help you understand a little) and this controls almost their entire lives... anyway, it makes it hard, as parents, to want to do anything as a family.

I've been trying harder to "live the Fragile X Way" as author Cindi Rogers puts it in her book, "Becoming Mrs. Rogers." (which was such a great read for me and I highly recommend it) Because of Cindi's words I have been trying to give our kids more preparation time for everything.


This means I have to give time for them to process every request, every need, every inquiry, every activity, every change, every transition... everything.

I'm in constant high alert mode trying to anticipate each action, reaction, instigator and consequence that may arise in 3 separate child's day, every minute of the day.

It's wearing.

"You're a meanie-miny-mo!!!!" I hear as I am quickly snapped out of my stupor. I actually kind of chuckle whenever Sister yells this at me because it's just funny how she has mixed the two things together to mean it as an insult, but it still keeps it light enough for me that I don't get too hurt by it.

It's 2 against 3 and the odds are definitely not in our favor, it seems.

We tried to get a third person to help us with the kids, but to no avail.

We were going as a family of 5.

Seems like it should be normal, right?

Sister screamed at us for the first 10 minutes of the drive and then was quickly distracted... no, annoyed, by her wiggling tooth. The wiggling tooth annoyance kept her from verbally attacking us which was a little bit of a breather, but we still had to endure the screaming and ranting over the tooth that wasn't coming out.

While heading to the Capitol Theatre in Salt Lake for the Access To Music Concert put on by the Utah Symphony and Utah Opera, the kids paused from the panic for moment to notice the lights of all the cars. So I took a picture of the serene moment.

It was about 10 minutes after this point that Sister was able to pull her tooth... *sigh* one less thing to bring on all her oversensitive sensitivities.

So, what is this "Access to Music" thing I am talking about?

It is put together for special needs children and their families.

We've tried to go for the last 3 years and it has never happened because of pretty much all I have just described.

We are now finally to the point that we realize EVERYTHING is hard when it comes to our kids and that there is not much we can do to change that. All we can do is be willing to go through the pain to get to the ultimate goal, and that is providing as much opportunity for our children to experience life in all it's facets... that even includes "baby music."

As we came into downtown Salt Lake City, Sister was becoming intrigued and even excited.

My nerves were beginning to unfrazzle as I hoped for the best.

Then we approached the parking garage and Baby began to come unglued.

She was trying frantically to get out of her seat and sheer terror was all over her face as she clambered to get out of the car! She was afraid because we were going into an enclosed space and there were cars behind us as we ascended down in the parking garage. She was so terrified, it made me want to cry.

She didn't calm down even when we got out of the car and she was safe in Daddy's arms, and then she was set off again as we got into the elevator.

Poor thing.

Not only is life terrifying for her, but so are the things that get her there.

At this point Sister was feeding off of Baby's fear and she was now screaming in her growly voice how stupid I am and she hates me and she doesn't want to go to the stupid music.

Then we saw the lights of the capitol theater and all 3 of them began to get excited!

Marc took this great shot

"It's so pretty! Wow!" Sister and Brother exclaimed with complete excitement, "It looks like an Opera House!" I thought Brother was going to collapse with utter joy as he dreamed of what it was like inside.

As soon as it was time to cross, well, actually before even, they were ready to run as fast as they could to the Opera House.

They were giggling and happy as they ran.

My heart leapt a little.


This was success.

We got inside to give the people our name for the seats and the 3 kids sauntered inside of the theater and their came gasps of joy and excitement as they saw the set where it would all be taking place. They could hardly wait to be seated.

I breathed relief.

All 5 us sat in reverence as we listened to the announcements and thank you's of the night and then the symphony began.... sigh... relax... enjoy...

Then came the opera singers and Baby was like a bat out of a hot spot.

So my enjoyment was but for a fluting moment... get it? Fluting? Fleeting? Symphony... anyway, I thought it was funny.

Anyway, I went outside with Baby to the foyer so she could escape the "noise." I was so worried that because of this that Sister an Brother would be right behind me in a panic, but they stayed in with Marc the entire time. Yay!!

I was so happy that they had a TV in the lobby showing the concert so Baby and I could still enjoy it.

It was made even more pleasant when a worker brought us two chairs to sit on so we could relax a bit.

Baby was loving it. She loved watching it on TV. She just wasn't able to handle the live performance.

After about 20 minutes Baby began to get restless and was ready to explore the stairs. So that's what we did the rest of the time.

At the end of the concert Marc, Brother and Sister came out and the kids were all smiles! They were so happy about the concert and I think they were proud of themselves too. Sister couldn't stop jumping up and down with excitement of how fun it was to listen to the music and be in a real concert hall.

Then the crowd built up as they were lining up for cookies after the performance and Sister was immediately back to her panicked self. She began yelling at me and everyone else who was within earshot.

She was that kid.

The one everyone feels sorry for the parents because they are not happy.

I hate those moments because I want them to know that she is actually a sweet happy girl who is just so overwhelmed by the crowd. Then I remember I am among people who "get it" and are empathetic to our plight.

I quickly pushed through the understanding crowd, grabbed her a cookie and we got out the doors as fast as possible.

Sister was still overstimulated at this point and even proceeded to tell a little boy to "shut up" when he complimented her Angry Birds jacket... sigh... I hate those moments too.

But, I was happy to get a photo of Brother and Baby in front of the theater. They were so happy.

So, as so many experiences as a family, it is not easy, but it is worth it to give our children experience and culture so they can be proud of themselves for overcoming fears and be ready for the next adventure.

I took video of part of the experience:

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