Wednesday, July 13, 2011

Speak up and ask

Connor and Daddy had been counting down for over a month to the day when Cars 2 would be released. Unfortunately after all our preparations Connor was only able to tolerate other children for about 20 minutes before informing Daddy "I gotta get outta here!"

I am so proud that he informed Daddy that he needed to leave rather than bolting. I really wish he could have enjoyed more of it.

I call my friend M and told her of the problem. Miss M has a boy the same age as Connor and they share a similar diagnosis, so I know she can empathize. She tells me about a theater in Newport (hours away) that has a sensory friendly movie once a month. I find myself whining "That's so far to travel with him for a situation that may or may not work." Wha
"Gas is so expensive" Wha Wha

So my friend Miss M calls the theater 5 minutes from my house and tells them.
"You know the theater up in Newport has a sensory friendly movie once a month and that is something the kids and parents around here could really use."
The manager: "We can do that. What do we need to do?"
Miss M: "Only dim the lights and turn the volume down."
The manager: "OK, and we can block off that theater for only special needs children."
Miss M: "Great, but a lot of these kids have dietary allergies."
The manager: "They bring their own snacks and drinks in."
Miss M: "Great! When can we do it?"
The manager: "How about this Saturday at 10am it will be $5 a person."
Miss M: "Thank you thank you thank you."

That one phone call made amazing things happen. That Saturday over 400 people with sensory issues and their parents got to watch Cars2 in a theater. They had to open 4 theaters and the staff was awesome. They let our local FEAT (Families for Effective Autism Treatment) set up a table inside the lobby. They were at every ones beck and call. They informed Miss M that they would like to start doing that once a week even though Miss M told them she couldn't promise that big of a turn out every week.

Not a single meltdown was had and if there had been, so what every person there would have understood. A few of the most moving things were the adults with autism coming in excited to see a movie at the theater and not at home and the mother that told Miss M that this was the first time ever that she even considered bringing her 19yr old son to the movies.

Thank you Miss M for speaking up and asking for us. You are continuing proof that one person can make a difference.

Tuesday, July 12, 2011

Back from Hiatus or somewhere

I know it has been a LONG time since I posted. Actually that is an extreme understatement. It's been a long hard road and it took a moment for me to put my big girl pants on and take care of business. That's all sorted now but it started with this note from Connor's kindergarten teacher.

'Mrs. Gibbs,
Connor has had a rough day - there was an episode that lasted for 55 minutes this morning (9:45 - 10:40). Everytime he kicked the desk, I held him, til he was quiet to the count of 5.
There were several several episodes the rest of the day including him kicking a classmate instead of a chair during lunch.

Trying to get out of my hold, he blew his nose on me, spit, and then urinated. I tried to make sure he was safe, but his squirming and other movement against the rug, has caused some rugburns on his face.

An ECE resource person was here to observe another child, but she took notes and will be at our IEP meeting too.'

How mad are you just imagining this being your child? He was 5 at the time.