Just Imagine.

Corbin had narrowed his lunch choice down to pizza or macaroni and cheese.

Corbin turned to Brian to ask him what he thought about it.

Brian ignored the question.  I tried to repeat it but it was obvious that the words were just not registering for Brian.  Mainly because we were in the dreaded grocery store.  You know the one.  With all the smells, the flickering/humming lights, and people everywhere!  

So I directed the boys to the frozen aisle and pulled out a package of Udi's pizza crusts and Amy's mac and cheese and asked Brian again, "Pizza or Mac and Cheese?".

Brian's face lit up and instantly pointed to the pizza crusts and yelled "PIZZA!".

Then Brian's face immediately fell as I put the crusts back into the freezer.

I tried to explain to him as much as I could that we had several packages of them already in our own freezer at home and I was on a budget and I didn't want to buy products we already had.  Yeah, like that lengthy one was going anywhere near his frontal lobe.

He seemed okay, a little whiny, but perked back up when I told him to grab a package of pepperonis to put on his pizza.

I thought the crisis was averted until we pulled into the checkout lane.  All of a sudden a floodgate opened and Brian just started crying.  Tears running down his face, screaming cries, and jumping up and down for me to hold him.  I pick him up briefly and I see the older man ahead of me shake his head as he looks at Brian's feet dangling down past my knees and my frame almost snapping backwards in the effort to pick him up.  I look him directly in the eyes and his stare falters.

After a few minutes of holding Brian I have to put him down.  He's heavy in his own right but add the winter coat and the boots and he just becomes even more awkward to hold.  As soon as his feet hit the floor he starts crying again and this time starts yelling, "Pizza!".

If I hadn't been next in line I would've run and got the crusts at this point but once again I stooped over and heaved his bulky frame up into my arms.  Once again I see people looking.

Honestly, if I knew it wouldn't send my child into even more of a meltdown I would've started screaming at the onlookers.

Really, all I wanted to say to them was, "Imagine struggling everyday to tell people around you what you want  or need.  Imagine it being a real challenge to get those neurons to talk to each other and finally succeeding in getting ONE word out that makes sense to those around you.  Imagine then not having the auditory processing ability to always understand how the people you love respond to that word.  Imagine feeling quite successful in the fact that you could say what you wanted for lunch and then thinking people around you didn't understand.  Imagine having the full IQ capability locked up in that beautiful brain of yours but not being able to access it at will.  Imagine having language, that thing we all take for granted, taken away from you.  Then tell me you wouldn't feel like screaming."

We finally made it out of the store thanks to Corbin.  Who loaded the conveyor belt, pushed the cart, and even ran the debit card.  My nine year old son had more compassion in his pinky than most of the onlookers at the grocery store that day.

Once we got home I ran in, pulled the Udi's crust out of the freezer, and handed it to Brian.  And finally Brian smiled. He knew his request had been heard.  

 

I'm A Believer.

Over the past couple of weeks both boys have been to a homeopathic doctor, the pediatrician, a psychologist, an AAC expert, and of course our regular weekly visits with the occupational therapist and speech therapist.

Within the next month or two we're planning on seeing a neurodevelopmental therapist, a developmental pediatrician, a behavioralist, and a neuropsychologist.

It's a lot.  And sometimes I just wonder why am I doing this?  Sometimes I think I'm wasting a lot of money, energy, and time.

However, it's not in my nature to just sit and continue on our current path if there are avenues we haven't explored.  If there are new concerns that are popping up I'm not going to just sit still and not try to figure out what we can do about it.

I'm not a skeptic, obviously.  I'm a believer.  I hold on to hope that there are keys to each one of my children that if we find it we'll see changes.  I am a believer because we have found those keys for certain areas like gut issues and self-injurious behaviors.  I am a believer for my own children and for all the children that I work with.

"Someone" asked me today how I was making all this money to pay for it all.  I just simply answered, "I find the money.  If there is a door that opens for us and the only block is a financial one, then I'll cut something else out from our expenses.  We don't have to go to the movies or have the newest gaming system out there."

Tomorrow we drive two hours to see a neurodevelopmental therapist that is trained and certified in everything: Bal-A-Vis-X, Brain Gym, Rhythmic Movements, Masgutova, Jin Shin Jyutsu, Craniosacral, and a ton more.  She's only here in the state for one day to do consulting and I feel very blessed to have both my boys being able to be seen by her.

So while that "someone" grumbles at me for spending my money (and where it's his place, I'm not sure), I can only look at it with my optimistic eyes that maybe she'll help us move our current therapies in a new direction and we'll see even more growth.

I look at it as I'm giving my two boys the best Christmas present I can- another chance to ensure their future is as bright as possible.

Continuing the Fight

If you've been following along at all on this blog then I'm sure you are familiar with our struggle with our local school district.

In the past few months I have obtained legal advocacy, evaluations, and had some very interesting IEP meetings.

Today was another one.

Three hours long.

The longest IEP meeting I think I have ever participated in as a parent or as a practitioner.

In the middle of the meeting I took the moment to address the team and tell them that everything they were laying out on the table sounded wonderful.

Sounded.

And I emphasized the word.  Because  I feel like I've been hearing about these changes but not seeing them.

I reminded them that we are nearing halfway through the school year and the ENTIRE school year thus far has been a waste of my son's time.

My son is not there to be taken care of as if he's in daycare.  He is there to learn.  It may be harder to teach him and to figure him out but that is their responsibility.  He has a right to an education.

The feeling of the room was somber and there were a lot of nodding heads around the room.  I, honestly, think they all agree with me, yet because everything is so fragmented and there is no background, experience, education, or training going on they do not know how to do it.  Again, not Brian's problem.  It's their problem.  They have a real problem on their hands.  

Agreed upon today was training (who would've thought it?  autism training for an autism program? huh?), hiring an autism specialist consultant to be used on a continuous basis, weekly 30 minute meetings for his entire team to get together and discuss him, adding TouchMath and Project Read to his curriculum, lunch bunches, increased time in Special Education, hiring an AAC consultant for continuous use (monthly), an individualized structured sensory diet with regular sensory breaks every 30 minutes, and new data sheets to track his engagement.

I'm again feeling a range of emotions.  I'm feeling sad for the time that has been wasted and the growth that we could have seen if his programming had been up to par to begin with.  I can't believe how much easier it is to get what I want when I have an advocate in the room.  Unbelievable because  I have asked for some of these things in the past and always been told it wasn't possible.  

I'm feeling proud for not giving up and continuing to push.  I'm really being positive that because of this whole situation all of the kids on the spectrum at Brian's school will benefit.  I'm hoping I'm shaping a program for all of them.  

When I left the school today a staff member that I don't even know other than seeing her in the hallways stopped me and asked how my meeting went.  I told her it went well.  She asked if it was done.  I told her that we had some more evaluations and consultations so we would be meeting again shortly.  She shook her head in disbelief over the time we've put in so far and she said, "We've all been rooting for you Heather.  We think it's amazing what you're doing to make sure Brian's rights are being met."

And with that I smiled.  It's nice to be acknowledged for the fight that many of us parents of kids with disabilities have to do all the time.  It's hard work, but we do it because we have to.

We do it because they are so darn cute. ;)

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.

Surviving Another Halloween

"Brian are you ready for trick or treating? "

One simple question that brought on a tantrum like no other.

He threw himself on the floor as I held his Scooby Doo costume that he picked out and repeated, "Remember you get candy! ".

Twenty minutes elapse and nothing has changed except I have an anxious Corbin at the door waiting for his brother.

Finally Brian rips the costume out of my hands and throws it on,though still screaming through the whole ordeal.

He runs outside still crying and howling. Imagine how much louder he gets when I approach him with a hat and mittens.

I'm wishing, at this point, we could just skip the whole tradition. However, I have another child who had been waiting for this night to arrive for weeks.

We drive to our usual Halloween neighborhood and Brian immediately jumps out of the car still screaming.

I'm starting to wish I brought noise-cancelling headphones for myself.

Instead of saying "Trick or Treat" at the doors he just cries obnoxiously and knocks over any children in his way.

Six houses later I realize he has stopped crying.

Is that a smile?

Now he's leading the group of kids we're with.

When I ask him to wait for the other kids he does all while saying "Gotta gotta gotta walk! ".

He never once tried to go into a stranger's home. That's huge progress from previous years.

He always took just one piece of candy and always grabbed something he knew he could have (lots of lollipops).

It was a rocky start for sure but we persevered and conquered another holiday.

The Next Tim Gunn

I had the pleasure and privilege to go to the Bare Truth Project gala this past week.  It was a gala celebrating the work of three photographers who decided to do a collection of breast cancer survivors and their scars to raise awareness.  My friend Amy was one of the beautiful models and I wanted to support her however I could.

But....

There was the issue of what to wear.

I'm very indecisive.  Just putting that out there.

I sent pictures of different outfits to probably no less than 15 close friends asking for their advice until I finally had it narrowed down to two dresses.

The night before the event I was once again trying on both dresses and trying to make a decision.

Corbin came into my bedroom and looked at both dresses and pointed to the black-and-white one and said "Mom, that's just a regular dress."  He then started stroking the sparkly-neutral dress and said, "But this one.  This one is like gold.  It's something special."

I laughed...but he was right.  He knew what he was talking about.

Corbins' Pick.

I told my Aunt the story the next day and she said, "Corbin's the Tim Gunn of the next generation."

And she's so right.

The kid knows fashion.  I'm not saying that he really cares about what he looks like every single day but when he wants to look good he does it.  He puts together combinations I wouldn't even think about.

He loves fedoras and ties and popping his collar.

He notices when I have new shoes and always comments on them.

He's definitely been brought up by a single mother.

Just another reason I love that kid.

October 24.

Every year I do a similar post and I may be running out of things to say about it.

However, every year I wake up and look at the calendar and a big rush of emotions come out when I realize it's October 24th.

October 24th was Corbin's duedate 9 years ago.  I'm not sure why his due date always sticks out to me so much but I have a feeling it's because he made me wait TWO WEEKS to meet him.

He doesn't like to do things the easy way, never has, and I cherish him teaching me all of these lessons while I wait for him to reach goals in his own way.  The first gift he gave me was patience.

Love that boy.

Finding That Balance

Lately I have been submerging myself in work.  I'm so excited about all of the new learning I've been doing that I can feel my neurons doing the happy dance.  The world is starting to make sense to me, I'm starting to make sense to myself, my clients are starting to make sense to me, and most importantly my children are starting to make sense to me.

I feel blessed that I'm working in a position that allows that carryover to happen right here in my very own home.  It makes me ecstatic to think about all of the new things I can try with the boys and I feel refreshed when I can let go of baggage and go at a difficult situation (example: studying spelling words with Corbin) with a whole new outlook.

However, as excited as I am and as much as I  feel like I'm  going to burst at the seams with happiness over this new knowledge, I'm finding it hard to keep my energy level going all day with my clients and come home and have that same energy level for the most two important children in my life.

It's about finding that balance and I'm still searching for it right now.

I come home from work, most nights after 6:00, and I'm tired.  The kids are tired too after a full day of school (where they're being slaughtered with executive higher-learning functions when they aren't ready for it- but that's a whole other post), then they have therapy, or an after-school sport, or if they are lucky just an afternoon at the pond looking at the natural habitat and trading praying mantises for tadpoles.

Then I come home and I have to make dinner.  Then we have to do homework.  Then baths.  Then supplements.  Then bedtime.  Bedtime would be the time that I try to sneak in a little bit of reflex integration...but some nights I'm even too tired for that- because I'm thinking about the dishes I've left in the sink or the group I have to do in the morning or the fact that if I don't do laundry I might not have a clean towel after my shower in the morning.

I know this is still new for me- the working full-time bit and the not-having-another-adult-in-the-house bit- and it will take patience and shifting of our routines to feel really comfortable.

Despite the difficulties it has added to our lives and our routines I don't feel that guilt piece at all.  And that makes me know that I'm doing the right thing.   I know that everything I'm doing is making a better life for all three of us.  I know that everything I'm learning, with the purpose of learning to be a better occupational therapy practitioner, is in turn making us into a better family.  What more could you ask for in a job?

Now that I've rambled, are you a working parent?  How do you make it work for your family?

The Inside Scoop with Corbin

I'm slow.  And I'm busy.  But I finally got around to posting this interview I did with Corbin after being hit up with a meme from Karen over at Solodialogue.  

You know how memes work- they have rules- you HAVE to follow them or you will be stuck with bad luck for seven years (okay, not really, but it does kind of remind me of those chain letters) and then you pass it on to some other lucky bloggers to carry it out.

This one was fun and I'm sure Karen was hoping I would interview Brian but I'm just going to admit that this blog post wouldn't have happened until like December if I had to make up all the communication boards for him to answer each question...unfortunately he's not at the stage where he can verbally answer any question other than how to spell things.  Even "yes" and "no" questions have proven to be difficult as of late.


I took the questions directly from her blog and asked my oldest boy, who of course loves to be included in these things.  Without further ado....(and with no  correction of syntax)....

• What do you want to do when you grow up? I will want to be a scientist.
• Favorite holiday? Christmas.  What makes it best? Because you get too much toys.
• If you could live anywhere, where would move? Somewhere that do not have too much kids.
• Who is your best friend? Jacob.  What do you like about him? He's so tough.
• What toy would you buy for your best friend’s birthday? Whatever he likes.
• What do you want for your own birthday? I want a pet.
• What family rule do you think is the most unfair? No playing DSi until your room is clean.  Why?   Because I love playing my DSi.

Now who would like to join in on the bandwagon?  I'm not going to link to anyone...I'm such a party pooper aren't I?  I'm exhausted after a 9 hour conference today.  Excuses, excuses, right?  Please feel free to interview your little one and leave a link in my comments because I'd love to read them!

Playground Education

From the backseat Corbin’s voice rose, “Mom, when soccer is done will you please sign me up for karate classes?”

We had been talking about doing so for a while so I replied, “Yes, I told you we would look into it after soccer.”

A moment of hesitation and his voice rose again.  “I really need to know karate Mom.” Pause. “For the big kids on the playground who make fun of Brian.”

I tried to keep the van on the road as I quickly went through the emotions of surprised, shocked, sad, and angry.

After I had myself in check I calmly asked him to explain what the kids were saying and why they were saying it.

Corbin went on to tell me that he likes to tell people about autism.  He said, “I want Brian’s autism to be gone Mom, I really do.  But autism is also cool sometimes.  It’s hard to understand so I want the other kids to know about it.”  A month or so ago I told Corbin that people’s hate usually stems from ignorance and I think the kid took it to heart and wants to educate the world. 

I told him I completely agreed and that Brian’s autism has taught both of us a lot of things and made us really great people because we are tolerant of differences and we even embrace differences.   I told him that sometimes autism made for really fun things for us to do like jumping on couches, having a swing in our kitchen, and going to really fun ASM retreats.

He told me that the kids he’s been growing up with since Kindergarten seem to really like to hear about it, but the bigger boys on the playground repeatedly say things like “Autism is stupid”, “Brian can’t talk because he is dumb”, and even remarks such as “Brian has to have cold lunch every day because he is stupid.” (Really guys?  Cold lunch means he’s stupid?  Really grasping for some straws there.)

Why are people so mean?  I was going to ask why are kids so mean?  But it’s not just kids.  Kids learn it from their parents, other significant adults, and of course media.  It broke my heart for Brian and for the challenges I’m sure he’s going to continue to face as he grows older.  However, I think it broke my heart even more for Corbin who is such an amazing older brother that just wants to educate the playground.  He is proud of his brother and he is proud about his own knowledge about autism and to have a “bigger boy” or group of them to challenge it right to your face and call your little brother “stupid” is heartbreaking.  It’s heartbreaking for me, how does it feel to my 8-year-old son? 

Every year I’ve done a small awareness project for Brian’s classmates.  Sometimes I talk to them a little bit about it and sometimes I just send home kid-friendly brochures on autism.  I think it might be time for a school-wide awareness project especially since this school is housing “The Autism Program” in our district (whole other joke- believe me, we’re still heavily working on that one). 

I need to take my own advice and hope that knowledge will eradicate ignorance and bullying and just plain mean spirits.  And I think Corbin is going to be my co-partner on this one- he clearly knows what he is doing.  Absolutely love that kid.

Oh and the conversation on karate and how it can’t be used on bullies will have to take place on another day when I am over feeling immensely proud of my son for talking about autism on the playground.

Goosebumps.

Tonight Corbin brought me the book, Wit and Wisdom from the Parents of Special Needs Kids, (by the way, have you heard of it?) and asked me to read the section that I wrote.

I started to read, while editing the few parts I didn't want him to hear (late night margarita anyone?).  Corbin sat near me intently listening.  Brian jumped around the room unaware of what was going on.

As I finished Corbin looked up at me and said, "Good job Mom".

Brian stopped flapping and jumping and walked over to me.  He PATTED MY ARM and said "Good job" while looking me in the eye.  Yes the "good job" was probably in imitation but he added the pat all by himself.

Go ahead, reread that part. 

Patted my arm, said "Good job", and looked me in the eye.

Goosebumps.  I've still got them.  

Thoughtful Recap

On Tuesday I had the last phone appointment covered under the Bright Eyes grant with The Johnson Center (formally known as The Thoughtful House).

Just like every appointment I've had with them- whether it be by phone or in person- it lifted me up just when I was starting to feel very "stuck" and in a place of losing motivation.

It was bittersweet, to say the least.

I entered our family into the grant application process without ever really thinking we stood a chance.  And when Brian was one of fifty children picked out of a pool of FIVE HUNDRED, I could hardly believe it.

When I look back over the year I am amazed at how much we've been able to change and implement and how much progress Brian has made.

Talking to the nutritionist this time I was feeling down about how much Brian's diet is lacking in minerals and vitamins and she told me to stop and then she started to recite where his levels were a year ago.  And it blew my mind at how much better his diet is now.

I think about where he was academically and how much progress he has made.

I think about how when we first went down to Texas Brian never slept.  And now a night with any waking is the exception.

I think about the unexplained tantrums he was having and how they were explained by realizing his gut situation and how repairing that took away the tantrums.

I think about how much pleasure it brought me to hear family members exclaim over how well he was tolerating family events.

Some days are hard for sure.  Yet when I put it into perspective and can really think back to where we were a year ago....well, it brings me to tears.

The Johnson Center isn't going to get rid of us that easily as we will be staying on as clients, only now we'll be scraping by and having to be a bit more choosier on the tests we choose to do.  But with the gifts they gave us over this year there is no way we could leave their family.  They have given us hope, happiness, and knowledge.  They have opened a door in Brian that some professionals would have us believe he didn't have.

Thank you to the Johnson Center and of course to the anonymous donor who made the Bright Eyes Grant available in the first place.  You really have changed my little boy's life.

Teeny-Tiny Moments

For some reason our pediatrician's fax machine does not like our pharmacist's fax machine.

Everytime we need something filled he faxes it over and we go to pick it up to find out that they never got his fax.

Today we went to try to pick up a new allergy medication that we are going to give a shot for Brian's chronic, going-on-five-weeks cough.  Only to be told they hadn't recieved the script.  This was actually the second time we had gone to pick it up to not find it there.

We left the pharmacy, left a message at the pediatricians and went home.

Not too soon after the nurse gave me a call apologizing profusely.  She told me she had given up on the fax machine and had called it in and that we could go back out and pick it up.

Yeah.  Okay.

Brian had just had a full day of school, gone to the pharmacy and to the grocery store.  We were home and he was in his pajamas within two minutes of walking through the door.  One could not expect me to get him to go back out in public without crying and public displays of tantrumming (PDTs).

Sometimes, it's those teeny-tiny moments, that make me realize how different our lives are.  No, not the fact that I just listened to the same line in Aristocats 378 times in a row or that I have a crash pad and swing set up in my kitchen.  Nope, just that nonchalant comment that I could just go back out in public, like it's the easiest thing in the world.

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.

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!

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.

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!

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.

Worry.

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.

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! :)

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!! JUST LET HIM DO IT!!!"

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.

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?"
Me: "SSSSSSSSSSSSSSSTTTTTTTTTTTAAAAAAAAAAAANNNNNNNNNNNNNNNDDDDDDD."
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.