Vindication & Sadness

The district's psychologist called me this afternoon to discuss what he was going to say at our upcoming IEP meeting.

He cut right to the chase and said Brian's entire program needs to be rebuilt. 

He started to spout off a bunch of different things and then he paused and asked "Well what do you think of his program? "

I also paused wondering just how blunt I should be.  Then I said it.

"I often feel I'm just sending my child to a daycare all day long. "

It was a conversation marked with pauses as he took another minute. I started to think I had been too rash and had maybe lost one of my allies.

"I actually wrote the word 'daycare' during one of my observations," he said.

He then said, "Brian deserves an education just as much as all of the other students in that school and I don't see that happening."

Two feelings washed over me: vindication and sadness. I felt vindicated because here was a professional the school hired that agreed with everything I've been saying. Sadness because everything I had been saying and assuming was true.

Dear Santa.

"Brian, want to write a letter to Santa?"

"Santa."

"Okay, well what do you want for Christmas?"

"Christmas!"

"Do you want trains?"

"Trains!"

"I want..."

"I want more trains!"

Perhaps the most simple letter Santa has ever received, but actually the first one I've tried to get Brian to write.  Prior to this year I always just had Corbin write a line in his letter for his brother.

After sealing and delivering the Santa letters I started to think about what Brian would really ask for if he could and I think it would go something like this.

Dear Santa,

I have tried my hardest to be on my best behavior this year.  My sensory difficulties and lack of verbal skills really get in the way sometimes Santa but I really do try!

Speaking of which Santa, it would be killer if you could make the connections in my brain work easier so I could find the words  I want to say when I want to say them.  It really blows when I can't tell people that I want to listen to the Bee Gees or can't tell them that I'm hungry or that I just need to use the bathroom.

Also if it isn't too much could you make the bathroom more sensory tolerable?  And maybe just take away all the anxiety I have around going to the bathroom.  You see, I'm often constipated (sorry for TMI Santa!), and because of the years of being constipated I've developed some REAL anxiety around the bathroom.

Could you take away my intolerances and heal my gut-brain connection too?  I really hate having to always watch what I eat and then being sick for days because I climbed the counters and ate something I wasn't suppose to.  I'd really like to be able to eat apples again- they are my favorite- but I break out into rashes and become SUPER hyper (more like manic but I try not to use that word) every time I try to eat one.

I'd like for clothes to not bother me so much.  I'm seven now Santa and I know it's funny for me to only want to wear pajamas but really they are the most comfortable thing out there!  You could just buy me a whole wardrobe from Soft!  Their clothes rock but my Mom doesn't have the money to replace my whole wardrobe.

Something like this would work, Santa.

I'd like to have a sensory room Santa!  Complete with mats, huge beanbag chairs, tube lighting, a ball pit, a squeeze machine, a variety of swings, scooter boards, and a huge boatload of fidget toys.  Some tunnels, body socks, and weighted blankets too!  I'd love to have a room to escape to when I'm feeling overwhelmed!

Could you open a school in the area that gives kids of ALL abilities an equal playing field?  Using an alternative way to teach kids like me who aren't very strong in the language area.  I'm very smart Santa but sometimes people have a hard time figuring out how to unlock that.

Santa, I'd really like to make some friends.  Kids at school are very nice to me but I have a hard time making real friendships because of my language (refer back to my first wish please) and I have a hard time reading social cues (in fact, I'm not even sure what that means I just hear the grown ups around me saying it).  Sometimes I try to get close to other kids but I guess I get too close and they also don't seem to like it when I pick the lint and hair off of them.  I could really use some help in this area!

Santa could you somehow spread a bit more compassion into the world?  My big brother has had kids tease him for having a brother with autism, my mother has had strangers advise her on what bad parenting skills she must have because her child is throwing a fit in the grocery store (sensory overload!), and I get stares every time we go out to eat.  The stares don't bother me too much Santa but I see the pain on my Mom's face.  They bother her no matter how strong she pretends to be.

And last but not least Santa, I would really love some more trains.

Love, Brian

I Got It From My Mama

No words needed.  Just sit back and enjoy.

Overdid the Therapy.

Corbin: "Mom when did I start speech therapy?"

Me: "A little before you were two."

Corbin: "Wow, you knew that I couldn't pronounce my Rs way back then."

Me: "No Corbin at that point you weren't talking at all.  Not a single word.  You had speech therapy so you would start talking."

Corbin: "I think you overdid the therapy Mom, now I can't stop talking!"

Ain't that the truth.

The Next Zoolander.

Trains! Trains! And More Trains!

Corbin got a new Harry Potter Lego game for the Wii.

Brian has been eagerly anticipating his turn to play it.

I watched him as he rushed through the different playing scenes, paying no attention to doing any of the side missions.

He was always in a hurry and became exasperated when he couldn't quickly get to the next scene, throwing the controller at me, yelling "HELP ME!"

Until that is.....

He gets to Platform 9 3/4.  For all you Muggles out there, that is where the Hogwarts Train comes to pick up the students.

Yes, a train.

He then stopped and jumped and flapped while yelling, "A train! A train! A train!"

He made his character get on the train where they then get let off at Hogwarts and the train disappears.

Hanging out.
Waiting for a train.

Brian WOULD NOT move his character to the next scene.  He kept them on the platform.

At this point, Corbin (who is watching his brother play) becomes very distraught.

I remind Corbin that this is Brian's 1/2 hour of video games and he can play it however he wants.

After five minutes of Brian walking his character up and down the platform while smiling and flapping....

the TRAIN COMES BACK!

Brian was so excited!  Corbin and I were astonished, after we had just spent the last five minutes telling Brian that the train wasn't going to come back.  We watched Brian load his characters on and off the train about ten times between Platform 9 3/4 and Hogwarts (after that first initial wait period the train is always there for him to ride).



It never ceases to amaze me how many video games and movies have trains in them and my child's memory for knowing EXACTLY where in those games and movies the trains appear.  One day I watched him put in The Aristocats, Iron Giant, Dumbo, Anastasia, and Bolt one right after the other- going straight to the train scene, watching it, then putting in the next movie and doing the same.

Trains are everywhere!  And because of that Brian is one happy boy!

And the Winner Is....

I'm in a giving mood so I decided to pick TWO winners!

Congratulations to both Kathy Sima and Megan Watts!

I'll get your autographed copies out this week.  

Thanks to everyone for following our adventures and for entering the contest!

Again and Again and Again...

Brian was doing his manic thing on my bed, rolling around, hiding under pillows, kicking the blankets around, making lots of repetitive screechy sounds when he stopped, looked at me and said, "You okay?"

We play this game a lot and I replied my usual answer, "I'm okay.  Are you okay?"

He laughs and goes back to his thing.

Stops and says, "You okay?"

I answer, "I"m okay. Are you okay?"

He giggles and starts rolling and kicking and screeching again.

He stops, "You okay?"

This time I say, "Yup."

He stares at me confused, "You okay?"

I try another answer, "I'm good."

His grin is slowly starting to disappear, "You okay?"

I decide to push it a bit further, "I'm fine, thanks."

He goes to very serious mode as he reiterates, "You okay?"

Sigh. "I'm okay.  Are you okay?"

Instant facial expression change from serious to silly, manic-giggling boy.

Ten seconds later...."You okay?"

And so goes the life of repetition.

10 Things I Actually Retained

Today I completed nine hours of work, attended three parent/teacher conferences, had a 1/2 hour phone appointment with the school's psychologist, and spent an hour at the doctors office with the boys.

So I'm going to word-vomit here and see what I actually did retain from today.

1. Corbin rocks at math.  Corbin's teacher flat-out said he was the best in the class at math.  The psychologist said Corbin just talked and talked and talked about how much he loves math.  Corbin exclaims, "I want to be just like Mom and travel all over the country and win math trophies."

2. Corbin struggles with absolutely every other subject in school.  When asked by the psychologist what he would rate school on a scale of 1 to 10 if there was no math he says he'd give it a measly "3".  This worries me to no end.

3.  Corbin's special education teacher says Corbin isn't spelling words because he is rushing.  I'm not saying that he doesn't rush through things but three words for all of you teachers at his school: AUDITORY PROCESSING DISORDER.

4. I'm on a mission to decide what is the best possible math curriculum for a non-verbal autistic child.  Input would be appreciated.

5.  Doctor appointment for Corbin because I thought he had a urinary tract infection.  Turns out he's probably constipated (oh the things my kids are going to hate me for posting when they are older).  However, we end up staying at the doctor's office for 45 more minutes discussing Brian.

6.  Tomorrow I get to bring Brian in for a chest X-ray.  Doctors are all still on the fence with this asthma thing even though we did get that diagnosis at one point.  X-Rays are always a blast.  Rolling my eyes.

7.  Our wonderful pediatrician is getting us hooked up with a developmental pediatrician and putting in a call to the school to see if they will consult with a certain ABA specialist that we just adore and have been pushing for him to consult with our school for years now.

8.  Corbin has a high IQ, not new news.  Yet some subtests are as low as the 2% while others are in the 95%,  Again, not new news.  But like every time I hear it I get so frustrated with figuring out how to help him learn and achieve that potential I know he has.

9.  Brian's IQ scores come out pitiful.  Not new news.  The new news this time?  This psychologist actually AGREES that there are no IQ tests out there that can really capture a functionally non-verbal child's capabilities.  Instead of concentrating on scores he's researching programs that he thinks will work for Brian's style of learning and going to be pushing for them to be used at the school (think lots of electronic modalities).

10. Right in the middle of Brian's parent/teacher conference he plopped himself in front of me and said "BOO!" and waited for me to act scared.  He then did it to Corbin and to his teacher.  Too cute!!

Making Our Way: Autism

Brian is famous.

For many reasons, in my mind.

But really he was on TV the other night.

In a documentary about autism.

Yes, it was mostly about another Maine family and about first responder training....but there was some clips from the last walk we participated in.

There's me, introducing Brian, and then I prompt him to say hi and he does.

Such a tiny moment but gosh, that kid is cute.

I'm not biased or anything.

Watch Making Our Way: Autism on PBS. See more from Making Our Way: Autism.

We're right around the 53 minute mark...you know, if you're interested.

CONTEST! GIVEAWAY! WOOHOO!

In honor of my oldest son's birthday I'm going to do my first-ever giveaway!

What is it, you ask?

You'll never guess!

It's a copy of Wit and Wisdom from the Parents of Special Needs Kids!

And it will be autographed by Brian himself!

This cool widget is kind of self-explanatory but you "earn" entries by following me on twitter, on The A-Word's facebook page, by tweeting about the giveaway, and/or by leaving a comment below!

Good luck!

**EDITED TO ADD: I noticed when I was viewing my blog that the widget doesn't always show up on the main page- please press the link that says "Read More" and then the widget will show up with all the buttons that allows you to put in entries to win the book!  Don't forget you can tweet about the contest every day and get a different entry for each tweet!  ALSO, if you already "like" the facebook page or follow me on twitter please know you can still get an entry for that!  You don't need to be a new follower :)**

Sleep is for the Weak

Brian decided sleep was for the weak.

Woke up for the day at 2:15 on Thursday morning.

Fell asleep around 4 Thursday afternoon and couldn't be woken up no matter the amount of jostling.

Then was awake again, for the day, at 1:30 AM on Friday morning.

I, on the other hand, require sleep.  A lot of it.

And it makes me grumpy to not be well-rested.

However, when I'm done pretending I'm still asleep, I turn on my bedroom light.

He immediately bounds over from his room with a little skip in his step and stops in my doorway.

He tilts his head, gives me the cutest grin, clasps his hands in front of his chest and says, "Mom! Hi Mom! It Mom! A Mom! Mom!"

He stays right there, grinning, until I say, "Hi Brian!"

He repeats, "Mom! Hi Mom! It Mom! A Mom! Mom!"

I laugh as he continues to stay glued to one spot.

"Do you want to come in Brian?"

He then sprints in and jumps on my bed and gets under the cover and starts squeezing my cheeks and playing with my hair while repeating, "Mom! Hi Mom! It Mom! A Mom! Mom!"

And no matter how sleep-deprived I am, I just can't stop squeezing him and being astonished at how much I love that little boy.

Sleep is for the weak.

Does the diet really work?

I get this question a lot.

At first I took it with stride. And really even still I'm usually excited to share our successes.

But when it's asked with that incredulous tone and that mocking look, sometimes I just wanna answer with something like this...

"No, I just love spending seven dollars on four bagels."

"I just do it because it's fun to limit our restaurant choices when we want a family night out. "

"No, I just like to devise another way to make Brian feel different."

OMG! Daiya is on sale for $4.99!  That's right! 8 oz of fake cheese could be yours for that steal!

Okay.  End of snarkiness.