A fluffy little letter to my sons school

Okay I wrote this letter after being ignored by so many people at Emerson's school and sent it to every email I could muster from my contact list. I sent it off without proof reading it so I apologize for any typos but it had already taken me 2 hours to write so i was just wiped. My mom said it was a little too tame lol


"Dear educating staff of my son,

I have a problem. A major problem.


My concern is on a quite a few different fronts, mainly the level of communication between myself and Emerson's teachers, as well as the communication between his educators to each other.

I require drastic improvement in the communication of Emerson's school experience on a daily basis. I have been calling, messaging and texting at least 4 people all week and have had less than satisfactory response (if any) and no where near the level of comprehensive information that I require to address things when he gets home. I can't talk to him if I don't know there is something to talk about.

Since his ARD a couple of weeks ago Emerson's behavior has degraded dramatically though I feel the full extent of his aggressions toward teachers and fellow students has been largely ignored (for months if not a full year) until this recent culmination of multiple severe incidences.(since Friday that I know of) since the ARD he has been going to BMC for part of the day which is the most dramatic change in his school schedule since 2010.



I require to be notified EVERYTIME he harms someone. He is having these behaviors at school for quite some time, apparently,(i have not been being notified) but not anywhere near that level when he's at home. That is until Monday.

He attacked Meadow that evening. She had the iPad after he had it taken away for chewing on the stylus and breaking it. He came at her hitting hard open handed with both hands on her head and face. We stood and talked about how she was sad and she was hurt. We talked about how what he had done was mean. He then asked if he could tell her he was sorry. He apologized unprompted and gave her a hug. This is the first time he has hit like that. Usually he will just hit once with an open hand and run away, always provoked by a toy being taken or someone singing. This was an attack and seemed very impulsive, something he usually doesn't have a problem with at home.

Our normal discipline technique at home is time out on the couch until he apologizes and can be nice and happy. He also looses privileges with tv, the iPad, and toys and can earn them back by being nice or by sharing unprompted.

If it is a meltdown opposed to a behavioral issue, he can go "to bed" until he calms down. He frequently requests that form of self regulating.

His aggression is getting pretty extreme as already stated. On friday he attacked a student and bit him on the scalp. He has fixated on this child for over a year, i just was unaware of how often( and frankly still do not know the full extent) i was informed on friday and when he came home I put him in time out to talk about what he had done. He wanted to appoligize to Evan and asked "You want to go to school to say sorry to Evan?" I told him we couldn't because Evan was at home and it was the weekend. I told him he could write a letter apologizing. He did. It took quite some time(over an hour) but he accomplished it.

It may seem like "too much work" or that I'm not fully aware of what im asking, but my fine educators, hard work is the very boy you see. He was evaluated at age 2 as severely Autistic and non verbal, on the low end of the spectrum. He made little to no eye contact and was uninterested in anything other than the credits at the end of a movie or the ceiling fan. Every emotion, every eye contact, every inflection in his voice was taught to him because what we are dealing with RIGHT HERE is the basis of his disability.


He HAS to be the biggest participant in his behavior plan or it simply won't work. The quality of his whole future depends on him learning the price of aggression and violence now, when he is an innocent 55lbs, 5 year old boy as opposed to a hormonal teenage man bigger than everyone around him.


I created a communication form that I have sent to everyone involved. It is a bit simplistic but I feel it's the basis of the behavior system I want implemented. I will continue to work on perfecting it and changing it as he changes. I feel that Emerson's aggression has been merely managed for quite sometime and steps need to be made to teach him that that behavior is not okay.

This form is to be filled out by Emerson but since he does not have this skills to do that himself ( a long term goal to be sure) I require the person in charge of him at the time, help him fill it out. Ask him what to say, ask him what happened( I also want sequence of events to be a major theme in lesson plans to help support the concept of accountability of his actions) if he can write some thing thats great. Ask him"what do you want to tell Mommy about hurting *insert name*?" Even hand over hand would be fine as we start but, his level of emotion withstanding, the very least is having him read what you write. Write it in a format for HIM. Example: "Emerson grabbed Evan by the neck a bit him. Evan was very sad. Evan felt hurt." If you can not use a child's name write "a friend." Play up the emotions involved and put the event in terms he can understand. Simple sentences with descriptive emotion. Believe me, he understands or more importantly is capable of the understanding I'm expecting of him. Adding the good points of the day should involve him as well, to help teach him self pride.

My goal is to have him read it to me when he gets home so we can discuss it. That way he will remember the event, and writing about it and we will have created a strong basis for him reviewing past actions and understanding they always have consequences, wether they are good or bad is up to him.

Writing out his own goals for the day may be useful as well.

As with every single skill we have worked on it will take time and dedication. Starting Just after he turned 2 We worked on simply saying the word "go" ....for 10 months. We lived ate and breathed "Go". That turned into an exercise in eye contact and closing multiple circles of communication. Early turn taking and even the very start of his love for numbers. It was "ready set "go" and the 123 go. It even lead to reading. Stop and go. Recognizing a stop sign while riding in the car and then spelling it out with magnetic letters on the fridge to his bewildered grandmother at the age of 3.

Believe me, this boy is capable. This is just the next hurtle. Now how invested will each of you be?

I have felt utterly ignored and brushed aside all week. Do you really think ANYTHING will change with him without my full time dedication. I need to be the FIRST person you call. Period.

I feel like his disability is being mismanaged and the last thing he needs is baby sitters. To be swept away to a secluded room on the second floor. His behaviors are forefront here but the price of these events can NOT be his chance at typical peer socialization. Not addressing them and resolving them will make it impossible for him to get the education he is entitled to by law. Neglecting to address it now will sabotage his whole future.

I look forward to a conference with everyone involved as soon as possible. I am available every Friday and will be there this Friday regardless of who is available.

Thank you
My name
And number

Spectrum Force

Babies? Autism Awareness? Star Wars? EPIC WIN.
Young Master Finnigin and Mini Dark Lord Ozius look amazing on the moon ;D

Puzzle people

Educate.
Advocate.
Participate.

Tasty!

Autism
Taste the rainbow....
And the cat, and the wall, and the bath tub, and your sleeve, and....

Hugging strangers in public...it's not what you think

How do we as parents of Autistic children connect with other parents like us? Primarily Facebook has been my vehicle of socialization, and not that I don't love each and every one of those connections, meeting in person is something I crave. I really don't have that many Autism Mom friends that I could just call up and meet for coffee. Now that I think about it, not any. (at least not without some MAJOR planning, and lets face it I'm SUPER lazy when it comes to working hard for myself. Other people? Sure! I'll work myself into an early grave but something for me?....eh..)

Lead in accomplished, I was driving to the grocery store on Friday evening, BY MYSELF. My sister came and stayed with my kids so I could fill my Yaris to the brim with the seat down instead of the micro trunk it usually has when you cram 3 small humans back there. Plus getting out without kids? That never happens!!

As I was driving, listening to my much denied NPR, I sort of glazed over the car ahead of me. I live, eat and breathe Autism Awareness so imagine my surprise when I realized I was looking right at a puzzle ribbon on the back of the SUV in front of me. I had this overwhelming desire to wave my hands at them, and honk. Roll down the window and shout "Look I have one too!," like a crazy person. Or even more lunatic, follow them. Yeah my heart sort of sank when the flipped on their turn signal....OKAY before you judge me, I assure you the feeling was fleeting. Also look me in the face and tell me that you haven't seen a fellow Autism Awareness magnet in a parking lot or on the highway and felt the same thing.

It's encounters like that that make me look at every stranger I pass, scrutinizing every screaming child I see in a basket at the store. Listening to screaming that sounds just like my little guy in the middle of a meltdown, and wondering.

Well today we decided we all needed a treat. We don't go out to eat as a family often, but when we do its pretty much CiCi's or Cracker Barrel(unless you count the random fast food or Uhg Chuck E Cheese) we decided to treat ourselves to Crackle Barrel tonight. When our super nice server came to get our drink order, we hurried and ordered Emerson's Chicken strips and fries, probably throwing her off but the key to a successful dinner is minimized waiting time for the little man. I have to say I think this was our best family dinner outing ever. All the kids were awesome!

At the end I decided to stop our server. Something made me tell her that Emerson is Autistic. Now I'm on the fence about telling strangers he is Autistic, especially when say he has had a good outing and the average person would have no idea. Not because I don't want them to know (let's face it, I seriously want the world to think of HIM when they think of Autism) but because I don't want to tell everyone his business. He is only 5 and still has speech issues as well as comprehension of social interaction but someday he will be self aware enough to understand what I say to people. I want him to be proud of his Autism, but its not my place to "out" him. I'm aware of this even now, though it seems like light years away. Anyways I told her.
I went on to say:
"You really wouldn't know because of how good he has been this visit. I just wanted to thank you for being patient with us and doing such a great job."

She sort of looked at me for a second and said:

"My daughter is Autistic."

OMG

Whatever your faith may be, or not at all, that my friends was a Devine moment!! After that I hugged her. I mean what are the odds?(shut up, of course I know the odds but it still blew me away!) Her daughter and Emerson are only 11 months apart. I was not pushy in my hug. It was very natural. Not the hug of strangers, but of allies. Kin. (I may be kind of theatric..but...whatev. Go with it)

We wrangled the kids into the car, and I sent the husband back in with an envelope. In it, a nice tip, a $5 Starbucks gift card and a little note just for her. Hillary, server at Cracker Barrel that I met for the first time tonight, wether you knew it or not, you have a built in family of people like me! Maybe I WILL get that coffee pal after all....

And the dam breaks....

After the widely read blog post "I am Adam Lanza's mother" all I can say, through gut wrenching tears, Dylan Hockley could be my son. I don't think I can ever be the same again. EVER.

Dylan Hockley died in Anne Marie Murphy's arms.

My husband walks into the house to me sobbing. He asks me what is wrong, alarm in his voice. He looks at the computer, "Oh."
 I turn it to him still sobbing. "Read."
He silently obeys. I put my head back on the couch and close my eyes. I wait a minute, then I hear his anticipated anguish. A few minutes pass. It feels like forever. He sits back, tears still steaming down his face, his voice thick,
"I wish we really did live on another planet."

Me too honey. Me too. I want to scoop up my kids and run. I want to hide in a hole. I want to hurt someone. I want to scream. I want to hug every child I pass until my arms give out. I do not want to dwell. I do not want to feel. I want to act. I want to make a difference. I want to feel like I'm moving instead of sitting, doing nothing.

This struck me to my very core(I thought that had already happened but I was wrong) Ignore the devastated woman over here, if you must. I am raw. I am not hiding.

Friday December 14th 2012 was the parent equivalent of 9/11. September llth was the first time in my life time that our country came together in soldiery grief.(or at least the biggest. read here) That was my first experience with tragedy, and soul questioning sorrow. 
It made me ask myself "What is humanity?"

Don't get me wrong, I am not trying to diminish 9/11, but this feels worse. This is innocence attacked. This offends every decent person across the face of the globe. This taps into our primal protective instincts. The cry of the world, not just this country, is our humanity crying out. This is what makes us sentient. This is what makes us alive.
 Love.
 I feel so much love welling out of my body it is painful and it may break me. I feel love for Ann Marie Murphy. I feel love for Dylan Hockley. I feel love for Charlotte Bacon. I feel love for every single child and adult that was present December 14th, those still here in this dim world and those in the light. I feel love for my community. I feel love for my daughter's teacher and my son's teachers ands aides. I feel love for every other human on this planet mourning along with me. I feel love for every child I see. My sorrow is because I love. 

I tried to igonre it because it hurt. I felt it on Friday but Monday broke the dam. Dylan Hockley broke the dam. 

Dylan Hockley could be my son. 

Don't blame a brain type

Autism is a sea of individuals.
One putrid drop
does not speak for the masses.
 Judge the evil, don't blame a brain type.