I Wish I Didn't Care.

Last night I was exhausted.

Yet, I was sitting on my bed with both of my boys' binders open in front of me.  You know those binders?  The ones that you keep all of the IEPs, evaluations, medical records, etc. in?  The boys actually have several binders each.  

I wanted to sleep more than anything but instead I was pouring myself into their IEPs....because yesterday was their first day of school.  And everything didn't go as planned.  And I'm tired of being so unsure and apprehensive about their school placement every single year.

I sat there and the thought crossed my mind..."I wish I didn't care".  Sometimes, I really wish I didn't.  Do you know how much easier life would be?  Yet, do you know how much crappier my kids' lives would be?

Well besides some problems with Brian's placement (it seemed as if they wanted to exclude him a bit more than I had planned, but it's fixed) and Corbin's utter dislike for his new classroom.....I guess it was a good day.  Well at least they looked good doing it, right?

Hurricane Irene Meets Brian

Hurricane Irene knocked out our power for about three hours yesterday.  Really the only damage done.

Not that big of a deal....unless you have autism.

Brian was running all around the house, trying every switch, every electronic.  Each try met with a bellowing "OH NO!!!! BROKE!!!!"  This went on for about the first hour until he finally gave up.

And try explaining to him not to flush the toilet after using it.  Yeah, that goes over REAL well with the OCD tendencies he has in the bathroom.

Thank you Central Maine Power for getting our power on before it got too dark.  Not sure what he would've done if he couldn't do the mandatory light flicking of the hallway before bedtime.

Secret Super Powers

I realized something the other day.

I make professionals working with Brian like me.  I don't know if they realize I'm doing it, but I seriously force them to become my best friend.

I'm not sure how I do it, maybe it's my secret super-power.  I always wished I could fly or be invisible, but I could settle for this.

I did it to my boys' SLP and OT.  Hence, why I had a job secured before I even graduated.  Hence, why I got our SLP to collaborate with the school SLP.

I did it to Corbin's first teacher.  Which is why when she knew Brian and I were coming to a classroom event she always made sure to provide allergen-free snacks.

I did it to Brian's first teacher.  It helped that her and her husband had been friends of my father's for a while too.  That was why she met with him several times during the summer prior to his second year.  It's why she came on her own time to his horse show.  It's why she had tears in her eyes when we finished up the year with her last year.

I did it to our special education teacher last year.  We are now seriously best friends.  We hang out all the time, call each other to complain about everything from men to NCLB, and I love her to pieces.

People like me and then Brian gets the services he needs.

Okay, now that I'm done trying to pretend it's me...

It's really this boy I have.  You can't help but love him, squeeze him, kiss those cheeks.  He is so unbelievably charming for a child that doesn't speak.  I have not met a professional that has not fallen in love with him.  Our new special education teacher has already been warned that she won't be able to help but fall in love with him.

He is so lovable.  And it's such a gift for him.

Well maybe he did get it from me (insert winky face).

Wasn't All Bad.

So on top of our trip to Funtown Splashtown, we also went camping.  I know.  I shouldn't even complain about any tantrums, right?  I just threw every single routine we had out of the window for three days....it was like I was asking for him to have a meltdown.  And then of course add in that the kid refuses to have a bowel movement away from home.  No wonder by the time we were in Funtown he was miserable.

However, now that I've had a few days to think it over.  I think it was a somewhat successful family weekend.

Low Points:

FOUR AM. NO JOKE.

• Thought we lost Brian a couple times.  Mix him having an excellent sense of direction and a distaste for communicating and we found him just going to the restrooms by himself without telling anyone on several occasions.
• The first night we camped out, he woke up at 4 am.  Him and I actually climbed into the minivan and watched movies on the iPad as to not wake up the entire campground.
• I finally released him from said minivan at 6:20 am....only about five minutes later we had one of our "neighbors" screaming "STOP!!!" from her camper.  He's loud in the morning.
• We're pretty sure he peed sometime during the night.  Sleeping bag was dry, pajamas were dry, but there was a definite scent of urine.  Still trying to figure that one out.
• The campground deciding that the outside family-movie was going to be "The Little Fockers."  We thought it was going to be The Last Airbender.  When the movie started Corbin looked at me and said, "Am I suppose to be watching this?"

High Points:

• The neighbor that we pissed off?  Well her and her boyfriend and friends were up drinking and being loud until midnight or so the night before.  So really that above bullet up there...not even a low point.  I find it HILARIOUS that we woke her up the next morning.
• Building a fire.  He really got into helping out and he was able to behave really safely around the campfire.
• Hanging out at the beach on Saturday.  Brian LOVED the waves.  It was a great morning.
• Sumo-wrestling with Corbin.
• Sneaking away with my sisters to celebrate my little sister turning 21.  Having such a great Mom that she stayed at the campground with all three of her grandchildren so we could go act as if we didn't have any responsibilities.
• Smores!!

Bwahahahaha.

Does it make me an evil mother that I can not stop laughing at my kids' expression on these rides?

I seriously didn't force them to go on them.  

Brian even asked to go on the log flume again and again.

My stomach is seriously hurting from laughing so hard.

I hate autism.

"I hate autism.  I effin' hate it."

I said these words to my sister as I watched my son play in the kiddie pool at Funtown Splashtown.

He's seven years old and he was sequestered to the kiddie pool with all of the toddlers.

We tried to play in the Pirates Paradise.  A play structure with squirt guns, slides, rope ladders, a pirate head that dumps 500 gallons of water every two minutes ....every kids dream.  It really was  Brian's dream too.  It would've been perfect....if he was the only kid playing on it.

He loved it.   Loved it so much that he couldn't wait in line or share it.  I followed him through the structure as he flapped and laughed.  I grabbed his hand when he started to shove.  I had to pick him up as he kicked and screamed.  I had to chase him down as he ran in the "no running" zone.  I witnessed three adults try to hold him back from cutting in line after he had got away from me.

I could not handle it anymore.  Maybe it was the fact that I had only got 8 hours of sleep in the last 48 hours...but I did not have the patience to continue to pick him up, have him kick, have people stare, have him yell.  I couldn't do it.  

I carried him, while he screamed at the top of his lungs, and put him in the kiddie pool.  

It took a little while but he stopped crying and he did enjoy himself in the pool.  But that's all we could do.  He could not go to any attraction that required waiting in a line and taking turns.  

Poor Corbin had to go play in the big-kid pool by himself.  Then he went on some slides by himself.  Having a sibling with a disability really makes one grow up fast.  Later I was able to accompany him on a few rides as my sister was able to watch Brian in the kiddie pool.

I finally understood why some families will take their other kids on vacation without their ASD child.  Horrible to say, right?  And I really hate the thought of it, because I don't want to alienate Brian.  I just want to alienate his autism.  I want to kick it in the ass and make it leave our lives.

Someone told me it gets better.  Really?  Because I took Brian there two years ago and he did better at that point then he did yesterday.  Maybe it was a bad day.  Maybe it was because we had been camping and his routine had been off.  Who knows?  All I know is that if he didn't have autism, we wouldn't have had those issues.  

Yup, I hate autism.  End of story.

Corbinisms: Drama

There is a reason one of Corbin's earliest nicknames was DK (Drama King).


Corbin: "Mom, I've been  noticing something a lot.  Everything is made in China.  Everything I tell you!"

Corbin: "I curse you!!" {Said all the time.  When he realizes only grape popsicles are left.  When it's Brian's turn to pick a movie.  When it's time to brush his teeth.  When he realizes it's been a minute since he said it last.}

Corbin: "I'm pretty much a man now, Mom." {Because when we were out to eat he ordered his own dinner and then asked for a glass of water when he finished his lemonade.}

Corbin: "You did it Mom!  You are now the best OT in the world!  It's like a dream it's so great!  I can't even believe you are my Mom!  You are so awesome Mom!!"  {Yelled, while jumping up and down, after he heard I passed my boards.}

Adventures with Fairies and Thomas

A couple of weeks ago (and yes I'm just posting about it now) my sister and I decided to take our kids to a fairy festival at the Coastal Maine Botanical Gardens.

Was really looking forward to a chill day in an awesome environment.

What kind of horrible luck do I have to drive right past the annual Day Out With Thomas event that is held not too far from the botanical gardens?

I swear it was just a distant image when Brian starts hand flapping in the back.  The hand flapping intensifies as we get closer.  And then the howling begins as we drive right on by.

I'm looking at my sister with major trepidation in my eyes.  I'm not sure if she realizes the seriousness of the situation.  If she knows that my boy will not, absolutely will not, get over this.

She gets it though.  She tells me to call to see when the last ride is.

We placate Brian by telling him "First fairies.  Then Thomas."  We repeat it as a mantra as his sobs become less and less.

It seems like he gets it as we park and walk towards the festival.  But as soon as we are inside the gardens he just starts screaming again.

At this point I'm holding him.  It's the easiest way to really quiet him, yet I know we must look ridiculous.  My seven-year-old is really getting too big to be carried.  I'm kind of petite and his feet now hang pass my knees  when I carry him around.

Oh rocks with built-in sprinklers.  How I love thee.

He cried in the bathrooms.  He cried through the parade.  He cried while we walked.  And then, by the grace of the Goddess, there were spraying rocks at the entrance of the children's gardens.  They were our savior, because they snapped him out of his funk.

We enjoyed our time at the gardens, though we did have to rush it more than we wanted, to make sure we made the last ride offered at the railways.

Though Brian did end up having fun, there was nothing like the smile on his face when we said, "Okay, all done fairies.  Time for Thomas."

When we arrived back at the railways he was so ecstatic he couldn't hold it in.  Seriously, he couldn't: hand flaps and happy squeals abounded.

The event had a movie screening area, story time, a bounce house, a hay maze, a tiny tractor/"train" ride, temporary tattoos station, a railway museum, and a tent to play with toy trains.  All Brian wanted to do was play with the trains.  The trains that we have in an abundance right here at home.  I watched him closely as he tried to dictate the train table.

"Excuse me.  Clarabel does not come after Annie.  Annie always goes first.  Everyone knows that."


"You can't have two engines attached to each other!  You can put one at the end of the train to help it up the hill if you want."


"Colors people!  Look at the colors!! You don't put a red tender with a yellow engine!  Amateurs!!"

Of course he wasn't saying these things, but it was implied.

He started screaming when I took him away from the toys so we could ride on the real thing.

I love how Brian refers to Thomas as "Tommy".
They go way back.

He calmed down when he saw the life-size Thomas and thoroughly enjoyed the ride.

Yet, after the ride it was right back to the toys.

When we left not only was he screaming at the top of his lungs but my four-year-old neice decided she didn't want to be outdone and joined in.  We made quite the grand exit....we heard the comment, "Well you look like a happy bunch."

All I could do at that point was laugh.  Because I was exhausted, hot, and sweaty and was really ready to scream right along with the two of them.

 Magical day?  I don't really know about that.  More like magical moments.  But we tried.

Want to see more?  Check out our album.

Homonym Confusion

As usual Brian was screaming and crying while getting dressed.

It's the source of most of his tantrums lately: transitioning out of the house.  And that stems from the fact that he needs to change out of his pajamas or underwear, whichever one he has decided to don.

He needed help, but he was refusing to ask, so I was waiting him out.  My own anxiety level climbing, as we had an appointment to make, so I'm sure it was feeding into his escalating crying.

Finally he realized I wasn't backing down and he asked, "Help?".  I started to pull on his shorts to realize they were too small for him.  He started to whimper again as I pulled the shorts off over his feet, because of course now, we were backtracking.

I threw the shorts onto the table and said, "Those are too small.  Can you go get another pair?".

He cried a few more tears and looked at me with a look of confusion.

He walked over to the fruit bowl, grabbed a pear, held it up to me and said "Pear!". He smiled and happily took a bite.

I let him enjoy his pear while I went and got him another pair of shorts.

A Break in the Clouds

In the midst of clouds, the appearance of the sun, no matter how brief, is so treasured, isn't it?

That's me being metaphorical.

Today Brian and I were hanging outside the clinic while Corbin was in speech.  We've had a lot of trouble with transitions, tantrums, and behaviors lately.

Yet outside, he was happy.

He was sitting on a rock and he started waving his fingers in front of him.  It wasn't the typical flapping that I see, but it seemed to have a real purpose.  I asked him if he was playing the piano, as that is what it looked like.  He looked at me and smiled and said, "No, 'puter".  Oh you are playing the computer!!

He laughed and smiled when I understood what he was doing.  I always think it is so amazing when I'm able to converse to him, but imagine what it must feel like to him when someone understands him!

A few seconds later he started to pretend to eat something out of thin air.  I asked him what he was eating.  He responded, "Chips!".  I asked if I could have some and he fed me some invisible chips.

Un-freakin'-believable!

He then spied some blackberry bushes.  He started picking them and eating them.  Amazing in it's own as he has never ate them before when I have offered them to him.

While picking the berries he scratched himself on the bushes.  He held his hand up to me and asked, "Are you okay?".  I replied, "I'm okay.  Are you okay?".  He pointed to his hand and said, "Look!  Abadabadaba  boo-boo!".  I kissed the scratches and asked again, "Are you okay?".  He replied, "Are you okay?  See!  Boo-boo!".

All of this- pretend play, smiles, reciprocal conversation, eating new foods- in the span of about twenty minutes.

We're home now and he's already had three crying spells for reasons unbeknownst to me, but I'm still flying high on those twenty minutes.  I love those glimpses of what my boy's true abilities are.

Another Year Older

Every year at my birthday I write a post about myself.

Two years ago I wrote about the materialistic things in my life that kept me happy.

Last year I may have tooted my own horn a little bit.

This year I just want to say, "I have no clue what I'm doing."

Honestly, every year I get a year older.  I should get a year closer to knowing where the heck my life is going, right?  I should have some kind of clue.

This past year has been wonderful.  I graduated and started my new career, which you know unless you were hiding under a rock, because I put it out there a lot (it's the Leo in me).  What you may not know because I've never addressed it on here, is that I also became single again.  I think that's what is putting me into this mode of discovering what it is I want out of life.  And wondering if I'll ever meet "the one", settle down, have 1.5 children (oh wait, I screwed that one over already), and a white picket fence.

Yet, looking and questioning what my future will be would only hinder me from seeing the beauty that is now. The beauty that is my present.  Beauty like this:

"Yesterday is history.  Tomorrow is a mystery.  And today?  

Today is a gift.  

That's why we call it the present."  

~Babatunde Olatunji

Back to School Prep Work

August is here.

That means it's time to start squeaking that wheel as the school year quickly approaches.

Don't you ever wish you could just sit back and only worry about finding the perfect sneakers for your son to start school with?  Not that that isn't an issue, as anyone who knows about the Buzz Lightyear shoes would know.

However, more pressing is contacting individuals in the school system while they are on vacation.  Hounding them is more like it.  To make sure your child can get into the school and visit with his new teachers, new classrooms, and new supporting staff prior to the school year starting.  To make sure that they have an acceptable program set up and in place for your child.  To remind them they need to provide new testing before November so I hope they are already scheduling it.  To make sure the new dedicated autism program that they promised is really going to happen and it's really going to UNDERSTAND autism and your child.  To make sure his backjack chair, visual schedule, and fidget toys are all ready in his new classroom.  

Then on top of that I have the list I need to do- new social story about 1st grade, updating his communication journal (his version of PECS but we call it a communication journal), updating the "Unlocking the Puzzle of Brian" book I give the school each year, making a new communication journal for the teacher & I to write back and forth in...on top of the school shopping I have to do for both boys.  

Ahhh, the joys of school.  Wish it was as simple as buying sneakers and notebooks.

Tree-Hugger

A trip to the park.

As told in pictures and as few words as possible.

Brian insisted on being spun on the merry-go-round over and over and over again.  And yes, the thumb still stays in even for that.

He then decided we should follow him on an adventure over the bridge.

We hadn't been to this particular park in over a year.

And though there are many trails he seemed to remember the one that he wanted.

He led us right to his favorite spot, where we decided to dip our toes.

He loves this spot because there is a current that goes over a little bit of a rapid just down the river.  

He throws in sticks and watches them go.  

On the walk back he decided he wanted to be a treehugger.

Literally.

The End.