You say Good-Bye, I say Good-bye

My young man has become very dependant on his schedules. Where he goes and when is very important for him to know up front. Every trip is planned out on his picture schedule, the number of pictures dependant on the number of steps to get to the final destination. Preparation to leave the house is to become another picture schedule since he now believes if you have your jacket and shoes (on or just carrying them) you are ready to go, regardless if you have any other piece of clothing on.

At school after I leave he is a different kid, closer to the one he was at home half a year ago. He barely speaks and does not express his wants. It was baffling at first to find out that the speech therapist at school had a goal for him to make 2-3 word utterances, while his out of school speech therapist is working on getting him to answer questions. It is a different world for him at school with overly busy walls, and children that he has no interest in.

I prepare the picture schedule with the PECS appropriate for each step;

Car, when we get in the car with seat belt on he removes the card, places it on the backside of the board and I prompt him to tell me where we are going next.

School, When we're parked I come to his door and he removes the card.

Office, We must sign in at the office every morning, this is the step that has caused the most trouble because at first he didn't want to go in, and then his bravery got the better of him and he decided to explore. This was fixed however with a "Don't get yourself in trouble, Connor." Yeah I couldn't believe that stopped him either.

Connor's class room, this is the last picture on the schedule. I had first tried to include a picture of a person waving "good-bye". I thought this would let him know that I was going to say "Good-bye". This backfired, upon seeing the goodbye card he grabbed his things and headed to the door.

The other obstacles in our way of completing the Office to Connor's classroom step is the occasional teacher and or therapist in the hall. To Connor this makes no sense what so ever. They are to be in the classroom, they do not exist anywhere else. The first sighting out of the classroom caused a meltdown in the hallway leaving me wondering how in the world I was going to get around this. Connor fixed it himself, now when he sees them in the hall or out the classroom he averts his eyes and does not respond to them. Yes, I'll have to come back to this one and remedy it.

The teachers and aides have always asked what they could do to help and have been most helpful, even adding the picture schedule to his IEP. However follow through has been hit or miss, causing them to have to deal with a meltdown in the hallway. They had left the classroom to go to the library, Connor is used to the idea that if the class leaves the room they go to the gym, lunch, or home. Not being shown a picture of the unexpected library before hand left him unprepared.

When talking to the aide and asking about using the pictures she told me he hadn't needed it as much since he got used to the normal routine. I was glad her boss was behind her listening to the conversation. The aide is the sweetest lady but she needs to be pointed back into the right direction occasionally, as do we all.

Respect and value

These two simple things are something I never really thought I had to worry about when it comes to Connor. He is sweet, endearing, funny, just one of the best kids ever put on the planet really, when you come right down to it. Or is that only in my eyes?

I am sure this Mom from my state thinks the same of her 8yr old boy. Educators trusted with his well being while at school obviously do not agree. If you respected or valued someone you would never lock them in a closet sized room.

My own Mother was so upset by this article that she woke me up bright and early on Sunday to make me read it. I don't know what is worse actually, the terrible situation this innocent young boy was in, or the dimwitted people that have posted comments on the article. Things that translate into; "That boy was making it difficult for the precious normal kids to learn. He shouldn't be allowed to be there." or "So what? He was being difficult. Teachers don't have enough resources to deal with that.". The resources these teachers do or do not have is not this little boys fault nor should he be kicked out of school because people believe the normal children should come first.

HBO recently aired a documentary called 'Autism the Musical'.
A Mom in the documentary made a comment that I really identify with. She said she could use the moments when people stare or make rude comments to enlighten them and get the word out but she could not make them respect or value her daughter. How true is that? Even though people are informed about the condition they fail to see that the person has a mind, thoughts, feelings, etc. The thought that the person they are smirking at may have intelligence totally eludes them. One comment made on the article about the little boy makes this quite clear, "If he wasn't taking anything in why have him in there? Put him in a class with other kids like him."
I will not even start on that one because I fear I will be typing all day.

The comments weren't all bad, but there were enough to put me up on several soap boxes, they were all mostly to do with autism so maybe you would say I was on several spectrums of soap boxes. Funny enough a little post about "special needs Moms" not having anything better to do than to stir up trouble (are freaking kidding me?) made me realize that was my new label.

I am a special needs Mom. I clean, cook, clean some more, taxi children to school and therapies, try to be a decent wife to my husband, make sure everyone in the household is healthy and happy, between all this I scramble for a moment or two to breath, find a second or two for me. But for all this I have no life and must stir up trouble where ever I can and put my poor child on display, it's quite sad really.

I know I don't have to worry about this sort of thing happening to my kiddo, but know this. If I found out someone locked Connor in a closet I would not be as calm as this lady and just sue the school. I would never have the chance before the person who locked him in got to sue me for bodily injury. OK stepping off my many boxes for the moment. Happy Hump Day!

Eat my chicken!

After the last few weeks wondering if my darling toddler had indeed been possessed by demons, we have finally landed once again in a very good place. He has abandoned his pursuits of knocking everything in reach over or running at windows with hands outstretched. Finding himself in solitary time outs until he could remain calm to the count of 5 has taken his heart out of it. What good is it to do these shocking activities if no one is going to act properly upset?

Good behavior has been abundant and so when it came time to make dinner and he wanted to watch a few videos on the computer I was very accommodating. It can be hit or miss with his communication about what he wants to watch so an amount of patience is requires from both of us.
"Rabby" he squeaks.
"Rabby? Can you point to it?" I am puzzled because we are looking at Thomas and Friends videos and I don't know of an engine with that name.
"Rabby, Rabby, Rabby!" He repeats and finally touches the character he wants to watch.
"Oh! Cranky."
"Cranky!" He smiles at me happy that I was able to figure it out.

As the video begins he sings to the music, "Dun da dah, dun da dah dah."
Perfectly he keeps the beat and then with out warning, "Eat my chicken!"
"Huh?"
"Eat my chicken! Eat my chicken!" He squawks, bouncing in his seat being very pleased with himself.
"Yeah, we are having chicken for dinner." I offer thinking maybe that was what he was going on about. Only to get a 'What the hell are you talking about' look in return. I leave it wondering where he might have picked that up and he watches another short clip this time about George the steamroller. It is only 40 seconds long and he sings along with the music waiting for his favorite part at the end. "Wooooo!" and he slides at of his chair on purpose to the last note of the music. It sounds like a sound effect that would be added when someone slips on a banana peel.

"Rabby! Rabby!" He squeaks when the George video is over.
"Cranky?" I ask
"Cranky!"
"OK, this is the last video before we eat. After this one we are all done with videos." I explain before I start it so he will know what to expect, even if he isn't happy with it.

"Dun da dah. Dun da dah dah! Eat my chicken! Eat my chicken!" Obviously I need to watch more Thomas and Friends or judging how he barely ate anything, especially not his chicken (it wasn't breaded and reformed into nugget shape, therefore unfit for consumption), I need to eat his chicken for him.

Old man grocery shopping

This an Email I recieved from a friend today. It reminded me of experiences in the store with Connor, except I could laugh about it.

An old gentleman was grocery shopping with his grandson. The toddler was crying and at times screaming at the top of his lungs.

As the old gentleman walked up and down the aisles, people could hear him speaking in a soft voice...
"We are almost done, Albert...
Try not to cry, Albert...
Life will get better, Albert..."

As he approached the checkout stand, He carefully brushed the toddler's tears from his eyes and said again, "Try not to cry, Albert...We will be home soon, Albert..."

As he was paying the cashier, the toddler continued to cry as a young woman in line behind him said, "Sir, I think it is wonderful how sweet you are being to your little Albert."

The old gentleman blinked his eyes a couple of times before saying.
"My grandson's name is John... I'm Albert."

Bad, bad Mama!

There had been so many things within the last week I had wanted to share and had not found the time to do so. Looking back all I can say is I have not been on my A game. I believe it had all started shortly after I made my last post on the 14th.

I answer the phone to hear...
"Mom, I've done something really stupid."
"What did you do honey?" I was really afraid to ask.
"I had a safety pin in my mouth while I was talking and swallowed it."
"How the fuck did you manage that?!" <----Bad Mama!
" I didn't mean to."
"I know sweety, I'm sorry. Was it open or closed?"

Thank goodness it was closed and after a few calls I found out we would have to wait for it to make it's grand reappearance. I did go pick her up early however because I could tell she was on the verge of tears from embarrassment.

A few days later, after I had taken the girls to school, I discover Connor has a low grade fever and can't go to school. He is tired not feeling well and will barely move from his bed when hubby answers the phone. My sister was calling to make sure we know that Melody's school is on lock down. I turn on the news to find out a girl reported seeing a male talking to two other young males in the cafeteria and he made a gesture that suggested he may have a gun.

Full panic! I want to go retrieve my daughter right now before some lunatic goes on a shooting spree! My hubby has to explain to me that lock down means I can get nowhere near the school much less get to her, even though I know this, I feel an exception should be made. I want to call her but she has very little units left on her cell. <--Bad Mama! So I decide to text her instead. I get no response. I find out later that this is the day she forgets her cell at home.

I do get information while I wait from my cousin who is a senior at the same school. He calls another of my cousins, who then calls my sister, who then calls me. They are all in their classrooms with the doors locked, lights out, and on the floor in the far corner of the room. I can only imagine how scared my baby must be and I break into fresh tears, again.

I let guilt get the best of me as I see swarms of parents wait outside the police barriers. I can't go. Hubby has went to work, Connor is sick and shouldn't be out in the cold like that. Even if he wasn't sick he is 3 1/2 and autistic, he isn't going to just stand there and behave. No there would be much running, kicking, screaming, scratching, and lying about on the ground. A police barrier isn't the place for a young child anyway. It also occurs to me that after the scene we would cause I may find myself questioned by police and the new subject of a social worker investigation.

They finally give the all clear and Hubby picks Melody up at the normal time, because some 250 parents were in front of him in line. The male seen that morning was from another school and did have a gun but had left shortly after being spotted. He was picked up by police later that day in a stolen car.

The next day I take Connor to the doctor. The trip there is a post in itself. He has a double ear infection. As we are leaving at around 10:10 Melody calls and asks "Mom, are you ready to pick me up?"
"Why do I need to pick you up right now?" I begin to feel nervous that they are having a repeat of the day before.
"They released school early because an ice storm is coming."
"I'm just leaving the Dr's office I'll be there as fast as I can."

Grace's school was nice enough to send teacher's out to the parking lot with walkie talkies to announce the name of the student when the parent showed up. Saving the kids from freezing their rears off. Melody's school however, the same one that protected her so diligently the day before, tossed the students out in to the ice and snow. I picked up one very pink, cold, annoyed teenager. Well at least she was only flash frozen.

Doctor, Doctor!

Give me the news....

I've got a bad case of lovin' you!!!

Happy Valentine's Day!

Coping with Progression

"Hey Melody!"
We had just got home from school. She was making herself a snack, when her little brother decided he was going to be social. It was a shock, she stood there slack jawed and brow furrowed until I prompted her to respond. She had suddenly become socially challenged.
"Yeah?"
"Whatcha doing?"
"Ah, making a soft pretzel. You want a bite?"
He looks down at the plate she has in her hand, reaches out and takes off with the whole thing. Stopping a few feet from her he looks at the pretzel in his hand and asks "What is it?"
"It's a pretzel." She explains.
"Pretzel!"

We are bewildered and ecstatic over this sudden development, but we also know there may be hell to pay. Every time there is progression in any form with him, there is also an adjustment period when sleep isn't great, extreme pressure is needed, more Mom-mom time is required, and a general urge to run amuck slamming and pushing on everything. This is a far sight better however than the meltdown fest that use to occur right before a major spurt of progression. For this we are grateful. However the amount of discontent usually coincides with the amount of progression. The bigger the achievement the more out of sorts.

I had thought that would be it for a little while, he made good eye contact and asked questions just to be social along with using the name of the person he was addressing. It was conversation, words spoken not to ask for something (even though he stole the pretzel). Not script or description of cars, dinosaurs, numbers, letters, or movies. This just a few days after spelling his name aloud for his aide. This was major!

However the next day he let us know he was not done. He and his sisters were playing in the basement when the urge to socialize hit again.
"Gracie. Melody. Mom-mom. I running!" He informs us as he darts here and there across the room. The girls pretend to be mimes, making it appear they are going down stairs behind the sofa. He thinks it's funny but has to ask "Where are you, Melody?" When it gets closer to bedtime and I inform him he has so many minutes before we have to go upstairs, he turns from me, starts climbing the stairs, waves his hand behind him saying "Bye bye Melody, see you later."

I have to prompt her again to respond so as to make it worth his effort. I can tell from the look on her face that while she is delighted she is wondering, as am I, how much more he can handle doing before he turns his head 360 degrees, projectile vomits pea soup, and starts speaking in tongues like the girl from The Exorcist.