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.

GF/CF chicken nuggets and other misadventures

We have jumped on to the bandwagon of the gluten free/ casein free diet. This has been tough! It seems everything in the known world has gluten and or casein in it! If you add to this the fact that my little guys craves bread and breaded things like a crack addict, then you can see the recipe for disaster.

I've had help along the way with removing all offending foods from the house. Other Moms have directed me to Whole Foods Market with lists of gf/cf items, things that are soy, almond, loaded with proteins, and other good things. My daughters, Connor, and I made a trial run to this store, just to see if the atmosphere was acceptable. Check the lighting and glare of the frozen food section. There is no toy department so this is a major plus. Though my youngest daughter did say the seafood section smelt like a penguin exhibit.

We all loved this place! Connor had his little basket and we did manage to get cf soy cheese, a watermelon, spinach, and juice smoothies before we had to go. He never had a meltdown or run across anyplace in the store he couldn't stand to be, but he had his engine on high and wanted to see every bit of the place at lightning speed. The girls and I did our 'divide and conquer' move, and made sure he was in someones sight and safe at all times.

After our trip it was time for me to make the gf/cf versions of his favorite foods; cheese bread and chicken nuggets. The cheese bread was easiest. A premade personal sized pizza crust, soy cheese, cf butter with garlic microwaved for a minute and he ate the whole thing. The chicken nuggets have been a bit more challenging.

Every single recipe I have tried he has looked at the nuggets then looked at me and said "No! Chicken nuggets!". So I tried to fix the shape of the nugget to look more like what you would get from fast food places or the store. "NO! Chicken Nuggets! No! Chicken Nuggets!"

I bought the microwave dinners with chicken nuggets and french fries, taken out the nuggets that come in it, replaced them with the gluten free ones and popped the tray back in the box and back into the freezer. This seemed to work until he picked one up. "No! Chicken Nuggets! No! Chicken nuggets!" Have you ever picked up a chicken nugget from a fast food place? If you squeeze it a little it is kind of spongy. If you take a bite and look at the meat inside it you will see that it is preformed meat. After lots of research I found out that those little beauties my sons loves so much are not only preformed Frankenstein meat but it yields a surprisingly large amount of skin. Yeah, I don't know how I'll get over this stumbling block. I'll figure out something.

I would like to give a special thanks my sister and her co-worker Mrs. Kimbrough
for directing me to A Year of Crockpotting.
The family has enjoyed 2 solid weeks of gluten free/ casein free meals! While Connor has enjoyed his chicken nuggets.

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.

No, I hadn't heard that!

Tell-tale words from a gossiping woman. My neighbor has caught me outside, unloading the car. She and others on our street must think we are strange, coming and going at all hours of the day (therapy), digging in the back yard and not planting anything (heavy work), loads of sand in the yard (sensory and heavy work), and Connor momentarily standing on the window sill naked (showing off his stripping and climbing skills). I tease my husband every so often when we are outside and see neighbors peeking at us, "Honey, come look at what the Osbourne's are doing now!"

"Hey! Can I throw a ham at them?" he asked.

When I was young the neighbors thought our household to be odd as well and they thought correctly. My first step-father parked his Harley in the living room. He would also stand out in the yard and yell "Kick back!" at the police, that were constantly at a suspected drug dealers house but never arresting anyone. When a strong downpour of rain came with out lightning or thunder, my Mom urged us to go out with a cake of soap or a bottle of Dawn dish soap and play in it. The neighbors would also witness Mom wrapping a frozen pizza in aluminum foil and putting it on the grill from time to time. Weird as they are I still recommend the later two if you can manage it, great fun.

This particular neighbor is nice enough although a tad nosy. We stand in the yard and make small talk. It occurs to me that even though I see her brow furrow at times, looking at us outside doing "odd" things, she is still nice and speaking to us. It then hits me that I have never bothered to tell any of my neighbors about Connor's diagnosis. Not that it would stop them from thinking we are strange, but I wonder if it isn't something they should know.

So how do I bring it up? It would never do to follow up "Nice weather we're having." with "Connor has autism." I wait for an opening and she provides it.

"So how are the kids doing in school?" she asks

"There doing great. Connor is starting school this year too. Although it will be later in the year. They have a lot a placements to work out yet for 3 yr olds."

I know that she knows that school programs in this area are not provided before kindergarten unless it is for special needs or you have a low income. I see the wheels turning and I wait. Right before smoke pours out of her ears she looks at me, eyes bulging and looking scandalized.

"Why!"

"Connor has autism." I explain

"No, I hadn't heard that!" she exclaims. I can't tell if her look is that of shock and concern, or shocking glee of being handing a juicy tid bit from the horses mouth.

I excuse myself "Lots to do, car to unload. Nice talking to you."

As I continue to unload the car of children and various belongings, that phrase keeps playing in my ear No I hadn't heard that! and I start laughing. It sounds like maybe she has heard alot of things about my family, just not that.

Occupational Monday

I switched up the tactics today. We put the superman vest on before getting in the car. On arrival I put Connor in his stroller. We all know she was late to show, we were too. Just a few minutes of looking at a book about a train with animals in it. It went beautifully.

She appears and as I promised Connor, I released him from the stroller and vest and he walked calmly to the "Bean Room" with her. He spent most of his session in the tent with all the dried beans and rice again. The amount of words coming out of that tent was astounding and it hasn't stopped all day.

On the way home when he would normally be wiped, he has turned into the spotter.

"Hey bicycle!" and I could barely see it but, in front of the car wash down the road was a bicycle.

"Horse! Horse!" Sure enough there was one of the horse statue they placed through out Louisville.

"Truck..cars..Hello duck."

"Hey! What abouwowt me?" Upon hearing this I decide to take the advice some of you gave me and turn this into a conversation.

"What about you?

"Hey! What abouwowt me?"

"Do you need something, hun? I ask, feeling like I need to come up with a more original and engaging repertoire.

"Oh no!"

"What?"

"Oh no!"

"Whats wrong?"

"Naughty Gnomes."

"I don't see any gnomes." I fear I'm losing grasp of the situation as he starts scripting Thomas and Friends.

"On on faster faster....stop stop I wanna stop......I'll runaway."

"Ice cream? Popsicle? Yellow?"

We are home, we go to the kitchen and look in the freezer together. He pulls out a box of ice cream sandwiches that someone put back in the freezer after taking the last one. Grrr! He looks in the box, turns it upside down and says, "Empty! All gone! All done! Where did it go?"

He changes topics quickly "Diaper. Poopy."

My jaw drops at this late breaking news. Neither words have been in his vocabulary. Is he dirty? I don't smell anything, does he need to go? I try to steer him to the bathroom. Getting him through the doorjamb is more difficult than putting a cat in a tub of water.

"Diaper. Poopy."

"You need to go to the bathroom?" still giving gentle pushes toward the door.

He is getting frustrated with me and takes my hands to his hips making them go in a downward motion. He wants to be changed. Changing him in front of the bathroom door, determined that what ever is going on in that pull-up, I will somehow steer the event toward the toilet, I find he isn't dirty or wet. His has a large amount of dried beans and rice stuck to various private areas.

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.

Children songs now rated PG13

My little guy is very speeched delayed. He can say lots of words in form of identifying and in form of mands (asking for something), he can say some sentences or fractions there of, but these sentences are very new to the equation and are for the most part echolalia. I have sometimes wondered if he doesn't have apraxia, as sometimes he opens his mouth to say something and his tongue will not cooperate and just shoot back and forth in his mouth.

We had a wonderful OT until recently, her services had to end because Connor turned 3 and was no longer eligible for her program. She is very tactile defensive, so it was very funny to see her with my very tactile/sensory seeking son. But she came up with the best ideas. I suppose maybe she did this going off of what she herself couldn't stand. So when she said during one of her visits,
"I would love to see what he does with a vibrator in his mouth."

I have to admit that my first reaction was one of shock. So she explain to me that she was talking about a zip vibe, which is sort of like a battery operated toothbrush but has rubber tips he can bite on instead of the brushes. This was intended to make him more aware of his jaw muscles and such. Well this worked but a little too well or maybe my timing for it was all wrong. Long story short he had to bite something and when biting his own leg didn't produce satisfactory results he bit into a bar of soap. Chaos then erupted for a big part of the night.

We have since decided to stick with more low key tactics. Even though he does have a touch screen and programs he loves along with PCS cards and such, he loves music. He especially loves children's songs where you either have to do dances or hand gestures while singing. (Itsy Bitsy Spider, Wheels on the Bus, etc.) He can only allow one person at a time to sing with him, any intruder will find a little hand over their mouth. If there are more than one intruder on the sing-a-long he will flee. As has been the case at every birthday party so far. Hubby hasn't been allowed to join in on the singing very often, because he either doesn't know the right words or he messes up the hand gestures.

Last night as Hubby was lying down, Connor came in to play. He takes Hubby's head in his hand to make sure he has his attention.

"Asses?"
"What buddy?"
"Asses?"
"Uh..asses?"

Connor starts to jump on the bed and taking big bounces he sings as loud as he can.

"Asses, asses, we all fall DOWN!"