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.

Occupational Monday

A trip to the Goodwill to drop of a trunk full of old unwanted stuff didn't take as long as planned, so we showed up 10 minutes early for our 11 o'clock appointment. She was 15 late when another OT came out to tell us she was dealing with a meltdown and would be out as soon as she possibly could. "OK, no problem." I say with a smile.

With the same techniques as last week, using the stroller and superman vest, I added a few picture books and wax candy. We were good to wait for awhile yet with no tantrums. She arrived a few minutes later and when Connor sees her he starts to unbuckle himself and I take off his vest. He follows her through the halls bouncing and humming.

I have no idea what she was planning to do with us today, but I told her I would like for her to model joint compressions for me again. Connor had been adversive to it the last week when I get to his hands. I also let her know we were interested in trying the listening program. She had told me that they didn't move forward to the listening program until a good sensory diet is in place.

So when she runs off to get the CD player and headphones, it occurs to my that she must be under the mistaken idea that I have a clue of what I am doing. For those who wonder what listening therapy is, well I have a hard time explaining it but the link is here.

He was hesitant to wear the earphones at first but soon he was zooming around wearing them with no problems. She told me to watch him to see if there were any positive or negative effects. Apparently sometimes good things happen immediately and sometimes it takes a few tries.

When we get home he ate a peanut butter sandwich. He didn't tear it apart and play in it as usual, he ate it. When we went to my niece's volleyball game tonight he stayed in his stroller watching contently for the most part. The loud noises and lights did eventually get to him, but it was much better than usual.

No he didn't walk up to me and say "I need to go potty." or get himself dressed, or sit with me on the bleachers at the game like other children his age. Nor am I sure that it was the listening therapy that caused the good eating and temporary calmness. He could have been starving. He could have been just tired or very interested in the game.

At the end of the day however, progress is progress, and I will take whatever progress that comes our way as a huge blessing.

Oh well!

Before the summer was over the girls and I decided we needed to get out of the house and do something. Something other than going to the zoo or park. So we decided on a small road trip, to go out of town and eat lunch at a restaurant we have never been to before.

We packed up a small amount of supplies; snacks, diapers, and wipes for the boy. Ipods, magazines, and bottled water for them. Off we went and we really enjoyed ourselves. Unfortunately as we were turning into the parking lot of the restaurant we had decided looked good, Connor had started to nod off. He is of course grumpy as we wake him up and as I take him into the restaurant he starts to scream and kick. I leave my girls to find us a good spot while I take Connor to the restroom in hopes he will calm down. He lays crumpled in the floor now that all appendages have turned to jelly. I sit near him but do not touch him, if I touch him he kicks or throws an arm at me. A little girls walks out of the stall and stares at us as if she had come across a murder scene. She barely washes and dries her hands before darting out, all the while making a noise "Oooohhhhmmmm!"

He has decided he is suddenly happy to be there and is OK with leaving the bathroom. He takes my hand and we walk toward my daughters. We walk hand in hand and he is taking everything in and I actually see a smile on his face. His hand then starts to slip out of mine and his little body is starting a slow descent toward the floor as he sees his sisters and where they expect us to sit.

He is fine with sunlight when he is outside, but sunlight streaming in from a window is not tolerated. A table in the corner of a room that has a window on each wall where the rest of the room is relatively dim is absolute torture. There are no other tables available so I try to put him in a seat with his back towards the largest window hoping this will suffice. As I suspect the placement doesn't make it any better and he places himself where he finds it most comfortable for all senses, under the table lying on his stomach with his head as close as possible to our feet.

I reason with myself that if left alone he may calm down enough to adjust to his surrounds and that a pleasant lunch isn't totally out of the question. The waitress comes to the table to take our drink orders, she is much older and seems to very be concerned about the situation. She tries to talk to him like she would any other child his age. "Honey, you don't wanna lay down there. That floor is dirty, you'll getcha clothes all messed up"

"He is autistic, it may be awhile before we get him up off the floor." I tell her, hoping it will encourage her to go ahead with the drink order.

Still looking down at him like she expected him to react, she says in a very pleasant southern singsong voice, "Well........Oh well!" and leaves us to get our drinks.

I look at my oldest daughter and see she is red in the face and stopping herself from laughing. I chuckle a little and ask "She has no idea what the heck I'm talking about does she?"
"Nope not a clue."

At that point my youngest daughter pipes up "Who cares we aren't ever going to see these people again. He's not hurting anything, let's eat!"

Very sage advice I think.