Tuesday, September 27, 2011

Unbelievably Smart

I dug out the window crayons last night.  
Brian works best with novel ideas.  
He's not a sit at a desk kind of learner (like 90% of children).  

Look at our art work.

Yes, that is my handwriting on Ratatouille and Dreamworks, but he told me how to spell them, letter by letter.

Then he wrote "MCR" on the bottom.  
That's where his sitter does her figure skating and has brought Brian to once.

My child is not a phonological speller and may never be.  But that kid has got memory skills like no one has realized.  I know it.  They haven't tapped into it yet and I'm determined to.  That's how he is going to learn.

Furthermore, look at his trains.  I have never seen him independently draw trains.  The one on the right has a tiny "1" on it under the smokestack and he told me it was "Tommy".  He then went and put a "5" on the other and said it was "James".  He also wrote "T"s by both of them for "train".

He is so smart. 

Unbelievably smart.

And I wish EVERYONE would see that.

Monday, September 26, 2011

Pronoun Confusion

I try to be "real" on my blog.
And lately I think I have been real depressing.

However, you have to laugh about things.
Or else life just sucks.

And sometimes I wonder what I would laugh about if my kids didn't have their quirks.

Take for instance, Corbin's newest addition to his bedroom door:

Love it!  Pronoun confusion and all!

Saturday, September 24, 2011

I Won't Allow It.

This was my son when he came home from school on Wednesday.

First of all, let's ignore the fact that he does not have self-injurious behaviors at home.  And hasn't for a long time.  That's not to say that in frustration he won't sometimes bang his head on the couch cushion- but I have not seen him hit his head on the floor in years.

The fact that I am NOT going to ignore is this happened when he was in a room with four other spectrummy kids.  Him and one of those other boys require 1:1 support in all locations and times of the day.  There were two ed techs in the room.  And neither of them have worked with Brian one-on-one.  And I still don't have a clear explanation of how it was handled when he threw himself into a tantrum.  

The fact of the matter is I wrote the school on Monday- two days prior to this incident- with concerns about staffing and his LEGAL IEP not being met.  And heard no response.  

Needless to say Brian has not been back to school since Wednesday.  And he will not go back until I am told his IEP is being met and I do not have to be concerned about his safety.

It's ridiculous that I am getting absolutely zero communication from the principal, the district's special education director, or our superintendent.  It's crazy that I had to take the step to call Disability Rights of Maine.  It's insane that I now have other parents of children in the program calling me with concerns.  It's a huge red-flag that our special education teacher is resigning a month into the school year.  Things are happening.  There's going to be change.

It is what you have to do as a parent of a child on the spectrum.  As a parent of a child who can't tell me what happens during his day.  A child that is not going to be just swept through the school system.  This parent won't allow it.

Tuesday, September 20, 2011

I Want to Take Care of Him.

"Mom, when I'm grown up will I have to carry Brian to his bed sometimes since he'll be living with me?"

"Why do you think Brian will be living with you?"

"Because of his autism.  If he still has it as a grown-up I want him to live with me so I can take care of him."

Stick a dagger through my heart.

"Corbin, I love that you love your brother like that but I want nothing more than for you to live your own life and fill your own dreams when you're a grown-up."

"Mom, that is what I want.  Brian's autism makes him so much of a wonko (okay, though I was almost in tears that line made me want to giggle) that I'll worry about him.  I want to take care of him!"

No matter how hard it is for Corbin to have a sibling with autism- and I'm not down-playing it- I know it's hard- he loves that brother of his so immensely.  There's a bond there that is undeniably strong.

Corbin already supporting his "wonko" brother.

Wait For It....

The day you all have been waiting for is here.

No, it's not Christmas.

No, skinnygirl margaritas are not on sale.

No, I haven't invented calorie-free chocolate.

Okay- I'll just tell you.

Wit and Wisdom from the Parents of Special Needs Kids has been released! (Say that title three times fast.)

And I'm honored to be one of those parents that wrote for it!  Even more honored since the description says (and I quote):

Wit and Wisdom From The Parents of Special Needs Kids brings together dozens of the best writers in the blogosphere...

and it goes on to say a lot more.  I'm just stoked that some one (thanks Lynn!) thinks I'm one of the best writers.   Or at least they had to say that so they could sell some books.

But all kidding aside this is going to be one awesome book that you will want to have on your bookshelf!  It'll be like having a friend that says "I get it" when you open it up and read it.

Want to buy it?  I have a button over on the right side of my blog that is a direct link to it on Amazon.com.  Enjoy!

Monday, September 19, 2011

Too much to ask?!??

What is an IEP?

IEP: Short for Individualized Education Program, an IEP is the legal document that defines a child's special education program. An IEP includes the disability under which the child qualifies for Special Education Services, the services the team has determined the school will provide, his yearly goals and objectives and any accommodations that must be made to assist his learning. (copied & pasted from about.com)

See those words I made larger and bolder?  LEGAL DOCUMENT.

I'm at my wits end once again and September isn't even over.

I've been sitting on this for a little bit because I wanted to talk to people.  Get other side of the story.  See what my rights are.

pretty accurate description of what i look like right now.
Last week I went in to observe my child on his lunch break to find him in the self-contained autism classroom with four of his peers and one teacher.

My child has ON HIS IEP one-on-one support for every minute he is at school.  And I'm pretty sure that some of those other kids have the same.

These are kids that are prone to eloping, tantrums, and self-injurious behaviors.  How is my child, and the other boys, safe in that environment with only one adult?

All because it was someone's bright idea to give the ed techs that are assigned to my son and other children like him "duties"- you know monitoring lunch, recesses, etc. And I know FOR A FACT that this has been asked about by parents AND teachers to have this changed because of safety concerns and it has NOT happened.

This ON TOP of already concerns about his educational goals being met.  About the training the ed techs are getting on giving ABA instruction.  This is after me going in two weeks ago to go over his program and ME having to explain to the person doing his instruction what the difference was between him knowing his sight words expressively and receptively.

If the person giving him his instruction didn't know the difference, how the heck am I suppose to put faith into the data she is taking?  The data that shapes his programming and his IEP?

I feel like I have to be in school ALL the time to make sure things are going the way they are suppose to.  It's like a full-time job.  I can't do it.  I have a full-time job already!  I shouldn't have to do it.  I should have a school and professionals that I can put my trust and faith in that my son receives the top-notch education he deserves.  And that he's freaking safe in his school environment.  Is that too much to ask?!?

This is our third year now in school and I keep trying to be optimistic that this time they've got it figured out.  But they don't.  I'm done.  Done, done, done.

Saturday, September 17, 2011


My nephew's birthday party was winding down and the kids had all gone inside my stepbrother's house while the adults soaked up probably one of the last warm days outside.  I watched Brian follow the kids in and part of me wanted to go in with him but I resisted the urge.  He was having a great day and it was just Corbin and their cousins- all whom are familiar with Brian.  I wanted to let him go play and I wanted to relax.

Five minutes later I heard his screams coming from the upstairs bedroom.  I ran into the house- you never know with his yells.  He has the same scream for falling down a flight of stairs that he uses for not being able to close a door (because not being able to follow one of his OCD routines is, in my opinion, actually physically painful to him).

His scream of death was the product of not being able to watch a part in a movie over and over and over again.

I carried him downstairs while he kicked and yelled while all the kids followed me.  They wanted to know why he was crying.  I tried to explain the best I could about how he needs to have stuff done in certain ways.  At that point Brian's screams were just escalating.

I carried him out of the house and tried to gather our stuff.  My father came over and asked Brian if he could hold him.  Brian went to him for two seconds until he jumped out of his arms back into mine screaming.  My father walked us to the car, patting my back, telling me I need to take care of myself and that Brian is getting too heavy to carry.

I buckled Brian in the car.  I did some deep breathing with him while giving joint compressions and he slowly started to come down.  The screams had stopped and the tears were much slower.  I turned to find my father still standing there.

The look in his eyes killed me.

I think he wanted to cry.  I wouldn't say it was pity in his eyes, because that would've made me mad.  But it was definitely worry in his eyes.  He worries about me a lot.  I know he does.  He worries about how I will take care of Brian on my own as he continues to grow.  He worries about the fact that when Brian gets upset like that the only way to calm him is for me to hold him in my arms.  And he's already more than a third of my own weight.  I can't do it for much longer.  And how am I going to calm him when I can't?  He worries about my future all the time.   He's my Dad, that's what Dads do...but with autism in the mix, it's a whole other story.

My Dad is so unbelievably proud of me and what I've done with Brian thus far.  And what I've done for myself while being a single mom.   And he wants the best for me.

So he worries.

After I gave him a hug and drove off I started to cry.

I pretend I don't worry.  However my father's look seemed to make a direct connection to these inner thoughts that I push down inside so I don't have to face them.

I cried because I worry too.

Wednesday, September 14, 2011

Anything You Can Do, I Can Do Better

Corbin loves to brag about the things he does well.  And sometimes he likes to brag about how much "better" he is at things than Brian.  He can read better, he can add better, he can play sports better, etc., etc.  Now, Corbin isn't a brat (most of the time)- it's just him making observations.  It's his way of questioning me about autism and why Brian can't do those things.

I like to try to respond with things Brian can do better.  And honestly sometimes I struggle.

However, this week we found out that Brian can rollerblade better than Corbin.  Yup, you heard it here first.  Brian just has that balance thing going for him- you can see it when he climbs across the top of the couch or up on the counters.  Corbin...well that poor kid is awkward as hell.

Secondly, Brian is a WAY better hiker than Corbin.  This past weekend we hiked Bald Mountain, which is the fifth highest point on the eastern coast.  Brian loves hiking.  He goes for it- there's a path and he is ready to follow it.  He doesn't ever stop until he gets to the final destination (and if it's not marked well he'll keep on going).  He doesn't tire.
Brian: "Don't stop, c'mon guys"

Corbin, with his low muscle tone, requires frequent rest breaks and complains the entire time.

Corbin on one of his many breaks.

So when Brian starts talking he can stick his tongue out at Corbin and say, "I'm better than you!"

My two boys that love each other VERY much, despite all this stuff I write about! :)

Sunday, September 11, 2011

I Can't Fight It Every Time

Brian takes the "Be Kind, Rewind"
slogan a bit too seriously.
Brian is the most obnoxious person to watch a movie with.

I'm not even talking about the fact that he can't sit still and will often run in front of the TV repeatedly while jumping, flapping, and squealing.

He's now decided that he has to watch sections of movies over and over and over and over again....

That one phrase he thinks is funny, the one time the character falls down, or when they sneeze- he'll watch it for five seconds, rewind, watch the five seconds over again....it's ridiculous really.

It drives me bonkers and I don't even stay in there to watch it.  I usually allow him to do it while I'm doing chores or catching up on daily notes for work.  However, as much as it drives me insane, multiple that by 100 for Corbin.

Friday morning I was rushing around as usual, still with a towel on my head, packing lunches, with only about ten minutes left to go before we should be out the door (should being the operative word).  I hear Brian doing his thing on the television.  We have a house rule that there are no electronics before school, yet I was pretending like I didn't know it was going on because I was running behind and frankly I didn't have time for a tantrum.

Enter Corbin.  He starts covering the buttons on the VCR and pushing Brian away so Brian can't keep rewinding the part.  I yell out from the kitchen, "Just let him be Corbin!".  Corbin responds, "But I want to watch the movie without him stopping it!!"  I reply, "Please!!!  You can pick a movie after school.  Just let him do it!"

Corbin stops, I run upstairs to run a brush through my hair.  Next thing I know Brian is screaming like someone is putting burning daggers into his eyes.  I fly down the stairs to find Corbin tackling Brian to the ground to keep him from pressing the buttons.

And I lose it.

I yell, with that scary-mommy-look in my eyes.


Corbin is staring at me with his lip quivering, just about in tears.

I think I'm losing my mind.  Okay, maybe not my mind, but my patience.  I have been working full-time, not getting home until around 6 most evenings, doing all the chores and homework, getting the boys up and going in the morning...you know, typical working-single-mom stuff- but then throw in the autism.  I don't want to have that fight anymore.  I don't want to have to either fight a tantrum every minute or bend my own rules to avoid a tantrum.

I don't want Corbin to have to deal with crap because I'm too lazy and rushed and strung-out to face that autism head-on.  But I can't do it.  I can't do it every time.  And sometimes I just need him to let his brother watch the same five seconds of a movie over and over and over and over again.

I'm sorry, Corbin.  I really am.

Wednesday, September 7, 2011

I Hate Spelling.

Wasn't it just a week or two ago I wrote an "I Hate Autism" post.  Damn, I got some really negative vibes going on lately.

Corbin, you are not alone!
Anyhow, I don't really hate spelling.  I kind of enjoy it and I think I'm alright at it (no, you do not need to point out any mistakes I've made previously).  However, I do hate spelling for Corbin's sake.

Tonight was the first night we sat down to practice a spelling list.  I say the words and he tries to spell them back to me.  Should be easy enough?  Wrong.

First of all, he doesn't hear the word I'm saying. 

Me: "Stand."
Corbin: "Stamp?"
Me: "Sssttttaaaannnndddd"
Corbin: "Stan?"
Corbin: "Supercalifragilisticexpialidocious?"
(Okay may have exaggerated with that last one just a bit)

Once he does understand what word I'm saying, if he does at all, he'll then try to spell the word.  However, he still isn't consistent with knowing what sounds certain letters make- ESPECIALLY vowels.  Then if by some miracle he has figured out all of the letters, you better believe his dyslexia will get in there and transpose at least two of them.

Tonight after some drilling he just threw himself on my bed and exclaimed, "I don't get why this is so hard for me!  I can't even seem to hear what it is you are saying!"

I answered back completely nonchalantly, "Well kid throw in some phonological awareness issues, auditory processing deficits, dyslexia, articulation delays, and  poor memory skills...it's no wonder it's a challenge."

He looked up at me with a smile and responded "I have no idea what any of that means but okay, guess I just have to work harder."

Seriously, I am so much in love with this kid.  So many struggles (this doesn't even get into bilateral coordination, muscle tone, sensory issues, possible facial agnosia, and reflex integration) and he just keeps trucking through it all while smiling and making jokes.  Love him. 

Autism is Not the Wingman I Envisioned

Recently I decided to stop having my blog automatically syndicated to my own personal facebook page.  I made a little announcement so people would know they had to either "like" the page or connect via blogger to keep up with it.

For the most part, I think people didn't care or notice.  However I did have a few inquiries on why I wasn't going to post them anymore.
Turns out you can share TMI online.  Who knew?

My answer?

I'm dating.

Yup, I'm dating.

In 2011 when you date, right after a guy asks for your digits, he'll ask if you have a facebook.  I'm cool with that.  Until I started to realize these guys that I had newly become "friends" with were now seeing my blog posts go up every day.  They were seeing it all: autism, bowel movements, tantrums, special diets, supplements, money, my tears, my joys, my fears, my cursing.  It's too much to share with someone that you're just getting to know!

Yes, I realize they can probably just google our names and find my blog but in my pretend world I'll pretend they won't do that.  Yes, if any of those friends turn into something more serious they're going to have to learn about autism and all the wonderful things that go along with it.  And all of the not-so-wonderful things too.  And it will be the real test on if they are even relationship-material.  But for now, I'd like to have the chance to scare them away with my own quirks before I add autism into the mix.

Tuesday, September 6, 2011

Obsessive Compulsive

Brian lives here and he has OCD (on top of many other things).

Here are a few tell-tale signs that he rules this home. 

DVDs can not stay in the player when the TV is turned off.
However, they also can't go back into their cases.

Open doors?  Not around here. Ever.

If one switch is on, the other must be too.  They have to be in the same direction.
This one drives me nuts.  I have auditory defensiveness issues and hate having the bathroom
fan on.  Yet, he'll barge in whenever I'm using the bathroom to make sure the switches are lined up.

For some reason he doesn't like any of his bureau drawers to have knobs on them.

Just a taste of Brian's quirks.  

Thursday, September 1, 2011

That's What I Needed

I had a chance to stay for an extra twenty minutes or so after dropping the boys off to school this morning.

I watched Brian on the playground for a little bit.  He likes to sequester himself to the corner of the playground where he leans against the fence and glues his eyes to a distant street across from the road.  Why?  Because there are train tracks on that road and there's always a very slim possibility he might get to see a train.

What caught my eye was two little girls in pink came over and stood next to him and were trying to converse with him.  He wasn't answering but they didn't give up and they ended up staying there next to him until the bell rang.

I sneaked inside and took the time to track down his special education teacher to see how the last two days have gone.  She's still getting to know Brian but she's definitely on top of things.  I like that she seems to be getting a good handle on his skills and is already thinking of ways to push him.

After I let her go so she could see to the rest of her students I decided to go see if I could peek into his regular ed room where he starts his mornings off at.  I wanted to be conspicuous but I really wanted to see how he was adjusting to first grade after two years of kindergarten.  

There was my little boy sitting at his table with five peers.  They each had their book boxes in front of them and they were all reading.  All of the other tables were doing the same thing.  There was barely any noise.  Brian wasn't looking around or flapping- he was sitting there reading his book to his one-on-one.  If she wasn't sitting next to him, there is no way you would've picked him out of the crowd.  

Wow, I'm so glad I got to witness those five minutes.  I just feel like it released so much of my tension and anxiety.  That's my boy.  My brilliant, sweet, full-of-potential little boy.
Not a picture from today.  But cute nonetheless.