Snow Day Oddities

Hey you guys, please tell me things like this happen at your house on a snow day...

"Mom, make me into a sandwich while I watch Avatar reruns"

A 200-card Pokemon array for your pleasure.

And you guys, those are both brought to you by my "typical" one.

Happy Snow Day!

Why We Are Ahead of the Curve.

So, this happened.

Yup, it happened.

I can't stop grinning from ear to ear.

Happy.

And you know why this is perfect and it's going to work?

Because he already loves my boy with autism.

Sure, it means so much that he loves me and I love him and I can be myself around him and he loves my quirks and he buys me flowers and we finish each other's sentences and we laugh over the same stupid jokes and we like to complain about the same things and I feel safe in his arms and we like to dance in the middle of the day in the middle of the living room....


But so many marriages struggle when autism comes aboard.  Many don't, but many do.  My theory is that when people get married they don't look at each other and ask, "What if our child has a major special need? What if we will always be our child's legal guardian?  What if...."

And then they're blindsided and maybe just not ready to cope with that- or to cope with it together.  They realize their coping mechanisms are very different.  Or they realize they have very different views on how to raise a child with special needs....I don't know....

All I do know is that I already know Colin is a great role model for both of my children, including my one with autism.  I already know he will listen to me talk about biomedical approaches and not undermine me.  I already know that he'll have the patience of a saint.  I already know he'll protect my boy as his own.  I already know that he'll freaking clean up the bathroom after one of Brian's mishaps...

because he's already doing it.

We've already had the talk about the possibility of my child living with us indefinitely if the need arises.  We've already talked about future children and how there may be a higher probability that that child may have their own challenges.  He tells me how much he will love that child no matter what.  I already know he'll love and go to bat for that future child because he does it for my two already.

And that's how I know.

That this is right.  And this is forever.

I am one lucky lady.

What to get a boy who only cares about trains?

Every year shopping for Christmas seems to be a bit more difficult for my boy.

First, let's start with the boring stuff.  Clothes.  What kid wants clothes for Christmas?  Too bad, it's going to happen.

I do try to buy them clothes they'll enjoy and like...however, it is getting harder and harder to find Thomas the Train pajamas in Brian's size.  Don't the Thomas creators realize their biggest fan base is a bunch of children with autism...that are all getting older??  They should really work on expanding their products.  The poor boy is running around almost nightly in a Thomas PJ set that looks like booty shorts and a belly shirt.

And then I just realized yesterday, as I was perusing Soft, that he is already in their largest size they offer.  For those who don't know Soft is a great clothing company that offers clothes for kids with sensory difficulties.  These are seriously the only clothes that my boy will keep on, EVEN IN OUR HOME.  What do I do for him when he doesn't fit in those clothes anymore?

Babies, toddlers, preschoolers- there are tons of leggings and sweats that are CUTE for them.  After a certain age you just get jogging pants.  I haven't seen Pajama Jeans available in boys' styles yet.  Not sure if I really want to see that, but Brian probably would enjoy them.

Christmases past have given Brian a lot of sensory items- he has received collapsible tunnels, compression tunnels, weighted blankets, swings, trampolines, and more.  There's not much left there that he needs anymore.

As far as toys are concerned, well Brian doesn't have much of an interest beyond trains.  I can bring Brian into any toy store and he will sniff out the trains.  And he will only want those trains.  I can take him into a toy store without trains and he will walk out empty-handed without a single complaint.

I try to get him toys that are educational or would help him with pretend play or are train-related but not an actual train.  He'll look at them.  They might get played with for one 10-minute session.  And then they collect dust.

They never get played with again.

I will most likely buy him more trains...it means an awful lot to me that he has that moment of happiness on Christmas morning.  That smile he'll have when he unwraps yet another Thomas train will make my week, for sure.

What are you buying your little ones for Christmas this year?

Innocence.

With autism comes the gift of innocence.

I'm not sure there are many 8-year-olds that I could make laugh with the simple "bite your fingers" game.  I know Corbin outgrew that some time in his toddler years.  It shows where my son is developmentally.

It also shows how happy my boy is with life. Oh, how I love that laugh.  It shows that he can appreciate such little things and be happy so easily.  I don't see much in life getting him down. I'm jealous of that a little bit.

The Magic Of Christmas

Yes, I know...Thanksgiving was just yesterday.  It's too early for this stuff...bah-humbug.

However, Santa came to town today.

Arrived in the harbor on a Coast Guard boat.

I wasn't sure if I was going to bring the boys down so I felt it out with Brian first.

"Brian, do you want to see Santa today?"

"Santa! YES!"

So that was decided.  We were going.

When it was time to go he got dressed without a single complaint.  We walked down to the harbor, passing his favorite toy store...he hesitated.  I told him that if we went in we would miss Santa's arrival.

He continued walking.

He hung out on the pier not taking his eyes off of the ocean and he waved and smiled when he saw the Coast Guard boat pull in.

He grabbed my hand and pulled me INTO the crowd so he could get up close to Santa.

He went right up to Santa and tried to rub his gloved hand on Santa's red suit.

He posed for a picture.


On the walk home we stopped at the toy store.  Brian pointed to a train set way up high on the shelf.  I said, "Not today but you could put it on your list to Santa."

He smiled and said, "Yes, Santa."

He turned around and was ready to leave the store.

We had at least three situations in that hour  that would, on a normal day, generate crying and maybe some foot-stomping.

I think he's finally bought in to this whole Santa thing...


 and I couldn't be more excited!

Count Your Blessings.

 Count your blessings.

A wonderful, warm home.

Lovely chaos that make me laugh everyday.

Words flowing from the mouths of my babes.

Flowers delivered to me on a weekly basis.

A home full of family on Thanksgiving.

A career that is fulfilling.

Friends that lift me up with a simple hug or joke.

A longing to live life to it's fullest.

A partner who gets me.

A place in his arms that feels like home.

A boy that decides to empty his piggy bank and his
toy box for victims of Hurricane Sandy.

A boy that puts his little hands on your cheeks and rubs his nose
against yours to tell you that he loves you, as the words don't come that easily.

Sisters that are always there when times get tough.

Parents who are your biggest cheerleaders.

Colin.
Corbin.
Brian.


Happy Thanksgiving!

Language Modeler

Last night in the car Corbin yelled out, "Look at the beautiful rainbow!".

It was pitch dark but this is often how conversations begin in our family.  Corbin blurts out something that has no meaning or makes zero sense.

I responded, "A rainbow?  Corbin, it's dark out."

Corbin answered, "Yes, look at it!  It's beautiful!"

Then Brian pipes up, "RAINBOW!"

"You see it too, Brian?  Are you both hallucinating?"

Brian yells, "Rainbow!  Look!  Rainbow!"

Corbin says, "Isn't it beautiful?", while snickering under his breath.

"Guys, there is no rainbow!  Corbin, now Brian is going to thinks stars are called rainbows."

Corbin laughs some more, "How do you not see it?? A beautiful rainbow!"

Brian laughs, "Rainbow!  Rainbow!"

I sigh, concede, and say, "What a beautiful rainbow."

Brian is screwed with Corbin as a model for typical language.

Lesson of the Day: Be Kind.

"I'm feeling really angry right now," piped up a little voice from my backseat out of nowhere.

So thankful for this big brother.

"Really, what's wrong Corbin?"

"I'm thinking about something that happened at school today."

"What happened?"

"We were sitting at lunch today and 'T' was making a lot of loud noises and a kid at my table called 'T' a 'weirdo'."

"Oh, I'm sorry, that was not nice of him to say."

"I was so angry.  I balled my fists up under the table so he couldn't see and I told him, 'You know T is just like my brother, right?  They both have autism.'"

"I'm very proud of you Corbin for using your words instead of your hands.  Hitting is not okay.  Kids like that usually just don't know better and need to be educated."

"I just felt so angry Mom and now I just want to cry."

My blog seems to have a theme these last few posts.  It all boils down to this: 

Be kind to one another.

Teach your child about differences and how they can still be a friend to someone in a wheelchair, with autism, with down syndrome, etc., etc.

Teach your children that name-calling and bullying hurt people.

Teach acceptance.

Teach love.

Ann Coulter, Let Me Tell You What I Really Think

Ann Coulter:

The whole internet is abuzz today about your twitter post following the Presidential debates.  I know, that as your career wanes, that you are looking for shock value.  That you want to elicit responses, whether it's negative or positive, much like a child starving for attention.

I highly approve of Romney's decision to be kind and gentle to the retard.
— Ann Coulter (@AnnCoulter) October 23, 2012

You can say what you want regarding your right-wing tea-party crazy-talk politics but when you stoop to the position of referring to our President as a "retard" you've gone over the line.

When you use that word, you are degrading an entire population of people, that do not deserve that hate you love to spread like wildfire.

You are insulting my son.

You are hurting his family.

You are disrespecting this beautiful boy.

He is waiting for an apology.  I am waiting for an apology.  A whole community is waiting for an apology.

However, knowing your capacity for compassion and integrity we won't hold our breath.

Sincerely,

A Pissed Off Mom

Thanks to Jillsmo for starting this blog hop!  Join in and share a picture of your child that Ann Coulter is degrading with her immature use of words.

The R-Word

We have taken a break from the Narnia Chronicles at bedtime as we read this wonderful book, Out of My Mind, which is about a young girl with cerebral palsy who can't talk or walk, but believe me she has plenty to say.

It's not a coincidence that this book belongs in our home library.  Of course I picked it out to further my child's understanding of disability, acceptance, and shattering limitations.

Last night, we read the chapter about Melody going to her first inclusion class.  A "typical"child called her a "retard".

I paused.

I almost couldn't say the word out loud but I choked it out and then put the book down.

Corbin looked confused as he knew the chapter wasn't over and I blurted out, "You do know that that word is completely unacceptable and I never want to hear you call somebody that."

Corbin looked a little guilty and asked why it was so bad.  I struggled as I tried to figure out how to explain it to him at his age.

"When people call other people retarded they are making fun of a whole group of people who have no choice about why they're brains or their bodies work differently than ours.  They are making fun of people who are born different."

He still looked confused.

"People that use that word might think your brother belonged in that group.  Some people, who think it's okay to use that word, might someday call him a retard and how would that make you feel?"

Corbin's face scrunched up and he quickly responded, "That would make me feel like I would want to punch them!!"

Instead of taking the moment to teach that violence isn't the answer, I validated his emotions.  That's certainly how I would feel too, I wouldn't act on it of course, but I feel that way every time I feel he's getting mocked or teased.

We teach acceptance in this house.  We teach equality.  We do not teach respect for those that bully, hurt, or degrade those that are different.

We teach that words hurt.

And we teach that the "R-word" is as bad as a curse word. Actually in my mind it's worse than a curse word.

Tell Me I'm Not Alone

Balancing life is so hard.

I hate how easy some Moms make it look to be a working Mom.

I've been working full-time for a little over a year now and it's not getting any easier.

Oh, and I'm a part-time college student.

I've missed so much work over the past two weeks due to children's doctor appointments, busting my nose, my car not starting yesterday, and now Brian coming down with pneumonia.

I am on the brink of tears all the time and having a leak from our bathroom down to our pantry/laundry room this morning just isn't helping matters.

I always put the boys first but I can't help but feel guilty cancelling OT appointments with my "other kids".  As a parent, I know how important it is to have structure and routine and reliability.

There's not enough time, not enough of me, not enough sleep for me to just to be able to breathe.

Maybe next week will bring better luck.  I seem to do okay when it's just the typical day-to-day stressors.

Please tell me I'm not alone.  How do you all balance it all?

Never-Ending.

Conversations at the doctor's office.

Dr. S.: "Corbin, what does it mean when someone says that it's raining cats and dogs outside?"
Corbin: "I don't know."
Dr. S.: "Well what do you do when someone says that?"
Corbin: "I look out the window."

and then...

Dr. S.: "Corbin, I'm going to tell you a joke, okay?  How do you catch a squirrel?"
Corbin: "Umm...with a gun?"
Dr. S.: "Nope, you climb a tree and act like a nut!"
Corbin: (pause) "Ha ha ha" (fake laughter)
Dr. S.: "Did you get it?"
Corbin: "No."
Dr. S.: "Because squirrels like to eat nuts but people can also act nuts."
Corbin: "Ohhh.  Okay." (still not really getting it)

 Mixed with stories of him loving Pokemon but only so he can collect, sort, and line them up in a perfect array on the floor rather than play a game.  Loving legos but never building anything only sorting them.  Mixed with only wanting to read books that list facts, rather than tell a story.  Mixed with having language-processing issues yet a whiz at math and science.  Mixed with getting along with everyone but not really having any close friends yet.  And tons of little itty things....

Gets you a referral to see if your child may have Aspergers syndrome.

The Day My 8-Year-Old May Have Broken My Nose.

{{Otherwise known as the day I may have had a mental breakdown}}

It was time to go to school and though transitions had been tough a couple of weeks ago, we had been doing great after adding in a mandatory swing session before heading out the door.

What was different this morning?  When Corbin was done using the plasma car he left it on the front porch rather than the back yard.  As Brian was heading out the door he decided that the thing that REALLY needed to happen before heading to school was that he needed to ride that plasma car down the front steps of the porch onto the street.

Needless to say, I nipped that in the bud.  I mean, GOSH, I wouldn't want him to get a broken nose or something.

Something snapped and he ran into the house in full-on, full-throttle, crazy-tantrum mode.  He  ran to the "grand foyer" (hey, we're still excited about our fancy new home and like to use ridiculous names for all of our enormous rooms) and head-banged repeatedly on the floor.  Jumped up and ran to the living room where he proceeded to  scream and bite his wrist.  He ran around like a chicken with his head cut off screaming at the top of his lungs.  He finally laid on the carpet in the foyer in a prone position sobbing quietly.  I thought it was safe to approach him and I sat next to him and rubbed his back whispering soothing words into his ear....

*BAM*

He came up full-force right smack into my nose- shooting a pain up through it and through my right eyeball.  I immediately saw stars and tears came to my eyes.

Listen, not only do I have Brian, but I have worked with kids with special-needs for almost seven years now.  I've had some hits (just had a piggy-bank bounced off my noggin two days before this incident) and I'm a pro at holding it together while I enforce the rules and help the child calm down.  I don't ever cry in front of the child.  Not this time.

The tears were flowing freely as my entire skull reverberated with the pain.  I somehow managed to ask Brian through my tears (he was still crying and flailing around uncontrollably) if he needed to swing more.  I held his hand and led him to his swing where he instantly calmed down.  I turned around and sat on the stairs and just cried.

A few minutes later he was ready and I drove him and Corbin to school, still crying.  Walked him into the school with tears in my eyes as he just laughed and skipped on to the playground.

I went home and laid on the couch for two hours with an ice pack and ibuprofen.  And I cried for the entire two hours.

I tried to pull it together and went to work.  Got through two clients and I just started to feel nauseated.   There was pressure over my entire face and the pain was not subsiding.  My nose was swollen and there was bruising on either side of the bridge of my nose.

My co-workers pushed me to call my doctor who at the mention of the nausea urged me to go to the ER.

The ER was a joke with them repeatedly asking me, "So, you're here because of a headache?".

No, assholes, I'm here because I got hit in the nose six hours ago and the pain hasn't subsided.  I am gagging from nausea.  I get dizzy when I bend over.  I'm so freaking tired I can't keep my eyes open.  I tried to go to my doctor's but they were worried I have a concussion so that's why I'm here.

They examined me and came to the conclusion that I did not have a concussion though they did say it was very possible my nose was broken or at the least, fractured.  However, I'd have to wait for the swelling to go down to be sure.

They drugged me up with three different medications to help with the pain and to let me get some rest.

Before I fell into my drug-induced coma I heard Colin talking to the nurse in the hallway.

"So, I'm sorry to bug you but I don't think you explained well enough why she was nauseated?"

"We really don't know, it could be just from being in so much pain for so long."

"Yeah, I could see that.  She's had a lot on her plate lately too."

"Sometimes a good knock can release a lot of pent-up stress."


And then I cried some more.  Because it's true.  I think most of my crying that day was just a release.

Oh, and did I mention Brian was officially diagnosed with OCD this week??

OCD in Public

We were standing in line at the grocery store when the woman's coat in front of us accidentally swept across Brian's right cheek.

Immediately he ran over to me and pressed his right cheek against my coat.

Quickly, he turned around to press his left cheek on the woman's coat.

Knowing, exactly what he was going to do I grabbed him around the chest and tried tickling him to distract him.

Yeah right, you can't distract him when he's in the middle of an OCD routine.

His body goes completely rigid right down to his fingertips.  He immediately starts screaming and pulling from me. There is absolute panic on his face.  I, in no way, can hold him and keep him from doing a routine at this point.  He needs to do this routine to feel safe in the world.

The lady is looking down at him at this point with just a blank look, no smile, yet no menacing look either.  I quickly blurt out, "He has OCD and if he doesn't finish this routine he just won't be able to go on with his day."  (At this point you can see that I'm not even going into the autism diagnosis when such needs arise.)

I let go and he brushes his left cheek on her coat then turns to do the same to me.

Then he sighs and his body relaxes and he smiles and is back to his normal self.

The lady never said one word, she didn't smile, she just turned around and walked away.

I don't expect the whole world to let him touch them whenever the urge makes him do so.  Yet, I also don't know how to help him feel secure in this world without tapping things.

Sometimes when I describe these tapping routines that seem to balance out the world for Brian, I get looks and questions on why I'm so concerned.  It's not hurting anyone.

Not true,  it is hurting Brian.  He can't transition from room to room without adding 15 seconds to his day.  He can't transition out of the house without an extra minute.  It's not a cute little habit he's picked up.  There is pain in his face when he realizes he didn't do part of it and he has to jump out of the car and run back into the house before we can pull out of the driveway.

I can't expect everyone in the world to be tolerant of these needs, I dream for that of course, but I can't expect it.

I'm opening myself up to all possibilities on how to help get my boy over this latest hurdle.

People Like You.

As always special education was on the cutting block, but this was only my first time attending a budget meeting.  I had lined up a sitter and rushed from work so I could attend.

It was last spring, and I never shared much from it because it wasn't the final meeting and I didn't want to go into a frenzy with so many things left up in the air.

However, recent events keep bringing me back to that meeting.

In particular the one board member who kept repeating, "It costs more to send these children to out-of-district schools than it does to send my son to Tufts!  Tufts, I'm talking about Tufts!".

I'm not joking.  The pack rat that I am still has the agenda and notes from that meeting and I wrote that line down and underlined it each time she said it.

She went off to say that she didn't understand why we had to pay this much for this population of children.  The Special Education budget was ginormous and she was appalled by it.

Yet, she did not approve of changing our current district's system to better accommodate more children so that they didn't have to travel to other districts.

First of all, if I could speak to this woman in person, I would like to congratulate her for having a son at Tufts.  She is obviously very proud of this and if I was his Mom, I would be too.

Secondly, I'd like to tell her to fuck off.  

It must be nice to have the dream of Tufts and know that with hard work, preservation, and a really good recommendation letter your child will get in.  It must have been nice to know that he would get the education he needed in a public school to go on to an Ivy League college so now you can sit there and try to deny my child and others like him an education just to help them become functionally independent adults. I don't know how that feels that I can just relax and know my son's education will be taken care of to some extent.  Thanks to people like you, I have to go to meetings and hire lawyers and be a constant presence in my son's school just to make sure he's being kept safe and not being given up on.  Being given up on because you all know he won't ever go to Tufts.

It's because of people like you that my friend's team called an IEP meeting to chop off two hours of his day at his special school to BETTER MEET THE NEEDS OF THE DISTRICT.   People like you that make the district think it's okay to take away TEN HOURS a week of specialized instruction from her son.

It's because of people like you that when a school gets put on a spending freeze the first thing they do is decide to try to amend IEPs to double-up kids so they won't get the individualized care that they obviously needed in the first place or it wouldn't have been in their IEPs.

Let's screw over our most vulnerable students, who can't defend themselves, who can't go home and tell their parents what their day was like, and who probably won't ever amount to anything.  We know they won't go to Tufts.

Like I said before, fuck off.

Moments Like These

 Yesterday Brian decided he wanted a balloon animal.

We were at an event raising money for our local Humane Society when he became fascinated with the balloon artist.

The artist had several different examples of things he could make hanging from his tent.  

I asked Brian which one he would like and he promptly pointed to the green octopus and answered, "Octopus".

The balloon artist asked him what color he wanted.

He pondered for a second and answered, "Blue".

It was one of those moments that I wanted to just yell to every stranger within a twenty-foot radiance, "Did you hear what he just said??"

It wasn't necessarily the word itself as he has been able to label colors for a long time.  It was the combination of the fact that he answered a stranger without me having to intervene and that he really thought about it and didn't just say the color of the octopus that was on display.

I just don't get how everyone around us wasn't celebrating. 

And it's moments like that that you realize how much autism exemplifies those little moments.  And how much more one can appreciate the little things when autism has been such an integral part of your life.

Sibling Rivalry

I should really just consider myself lucky that with my children being 9 and 8 that this is the first time that I've had to deal with them fighting.

A lot of people ask me how the boys get along, how Corbin does with his little brother, what their relationship is like and honestly I have always had positive things to say about it.  They don't have the typical sort-of arguments.  They don't fight over toys because the only toys Brian has ever given any real love towards are trains.  They don't fight about who sits where because everything is SO routine around here that they have the same seats.  They don't fight because Brian doesn't know how to call his brother names and so Corbin follows his lead.

However, lately they have begun to fight.

Actually, I don't really know if it can be categorized as fighting.

But Corbin is becoming annoyed.

Brian has had a large increase in his OCD-like behaviors lately.  So much so that I am really leaning towards now saying Brian has Autism and OCD.  I don't even feel like his behaviors can fit under the umbrella of Autism anymore.  One of the gazillion things he is doing relating to this is tapping people.

He'll approach you and have to tap your right arm then your left arm, right arm, left arm.  He'll then turn and tap your left foot with his foot, then right foot.  If you're a lady he might tap your breasts, which is soooooo appropriate.  He'll do it to your cheeks, fingertip to fingertip, your knees, and so on.  He might do it only twice but it also might take him 12 times before he feels satisfied.

This annoys Corbin.

Corbin does not see this as part of Brian's disability.  He sees this as his little brother purposefully trying to annoy him.

So, Corbin has decided he'll run away from his brother every time his brother tries to do a tapping routine on him.

What happens when Brian is unable to follow his routines?

A variety of things at different extremes depending on the day and on the "necessity" of the routine.  He could scream bloody murder, lock his legs and fall backwards to the floor, bite his wrists, and/or cry real tears.  This will persist until he can carry out his routine.  We have not found a way to get him out of this tantrum mode until he can finish the routine.  We are hoping to get some answers soon from different specialists but for now, that's all I got.

I have tried to sit down with Corbin and tell him that we are all upset with the intensity and severity Brian's routines have become.  I try to explain that Brian can't control them.  I try to explain that if you just let him finish it out then we won't have to hear the screaming and Brian won't have to be so sad.   But I think Corbin is sick and tired of letting his brother do what he wants and he's gonna do what he wants instead.

Corbin seems to understand why Brian can't talk, why Brian needs a special diet, why Brian doesn't know how to make new friends, and why Brian only wants to play trains.  However I can not get it through his head why Brian needs to tap.  Honestly, I don't even really know for sure why Brian needs to tap.  I just know he needs to because the anxiety that comes out of that boy when he can't is so intense you can not deny that it is not a "need" for him at this point.

I hate when I don't have the answers and I hate seeing both of my boys upset over this.  I'd  rather them be fighting over toys.

Second Day Success

Don't you hate when the ed tech rushes toward you at the end of the day with, "I'm so glad you're the one picking him up today, I have to talk to you!"?

I hate things like that.  I swear the three seconds between that and her next sentence seemed like an eternity as my brain turned out five thousand thoughts per second.  Was it a great thing?  Did he headbang?  Did he urinate all over the bathroom?  Did he spontaneously say something new??  Please don't give me bad news on only the second day of school.

She then proceeded to tell me this.....

Brian was the first one out to recess and he started running towards the play equipment.  Suddenly he stopped and turned around as if he was waiting for someone.  He soon spotted who it was and....wait for it....yelled his name.  This boy that he was waiting for is a godsend and was in his class last year- just a sweet, wonderful little soul. Brian ran over to him and said "swing" with a bunch of jargon mixed in there.  The boy joined him on the swings.  And they swung together.

Later he played on a rock with a little girl.  He couldn't figure out how to climb it and he held his hand out to her wanting help.  She helped him and spent time showing him how he could do it by himself.  Another classmate from last year, whom Brian seems to love.

Then in music the same boy from before was sitting in front of him and again Brian yelled out his name as if he wanted to tell him something.

Take a pause here.

This is the first time he has ever called a child by their name (not counting his brother) without verbal prompting.  And he did it twice today!

This is more independent social interaction (on the second day of school) than he has done in all three previous school years combined.

I honestly have chills.

That is how I hope to be greeted every day after school!

Cutting the Cord.

I'm home.

I finally cut the cord and just left my baby in second grade.

Each year on his first day I stick around for a while, make sure he's adjusting well, answer any questions I can, help new staff understand the quirks.  Each year I think my stay gets a little shorter and a little shorter.

He still has his wonderful ed tech, this is her third year working with him now.  I can't imagine what kind of helicopter mom I would be without her.  She provides him so much stability and comfort.

I took such care packing his bag this morning, checking everything over and over again. So much stuff for a little guy to have to carry around.  He always manages though.

I watched his excitement as he realized this is the year he gets to play on the big kid playground, the same one Corbin has been on for a couple of years now.  I watched him run right in the middle of a kickball game and watched his brother gently guide him out of harm's way.

I watched him lead his class into his new room, with a little hesitation as he thought about heading back to his 1st grade room.  I watched him easily find his hook and his seat and put away all of his things.

I watched him color, cut, and write.  I watched him do his art project his own way, no need to follow the boring normal way.

I watched him get his backjack chair for circle and still slump down like a wet noodle.

I watched him go with his class to art.  I watched him obsessively stop at every water fountain (even though he's not suppose to) and do a sort of tap dance down the hall so his new shoes could touch every single different colored tile there was.

Most of all I watched his affect.  And he's happy.  He is really happy to be at school.  That is all I really needed to see.

Here's to hopefully an awesome year!!  It already seems to be starting off better than the last.

And I'm just pretending I don't remember the kid laughing at him when he needed help knowing what to write on the back of his art project today.  Karma, baby.  Karma.

Survival Items

Just another example of why our noise-cancelling headphones are our go-to item that gets packed for EVERY outing.

Brian was feeling a bit anxious when we got on to the ferris wheel but once I pulled these out his whole body calmed and he really enjoyed the experience.

What is your go-to item?  What saves you every time?

New Home, New Routines

With a new home, comes new routines.

And there is one that just has me laughing every time he does it.

Within the first few days of living here I noticed Brian was opening the front door every morning and yelling something out to our neighborhood.  He would then repeat this routine in the evening.

Just imagine that cute little red-headed boy standing in his underwear yelling with determination to all of our new neighbors who probably know nothing of autism.  I wasn't sure what it was he was yelling but it was definitely a similar phrase each time.

It wasn't until last week that I pieced together the whole routine.

In the mornings he likes to turn on all the lights.  He is usually the first one up and he comes down the stairs and turns on the lights in the foyer, kitchen, dining room, and livingroom.  Then he opens the door and yells.

In the evenings when it is just starting to get dark he likes to turn on all the lights.  He turns on the lights in the foyer, kitchen, dining room, and livingroom.  Then he opens the door and yells.

With this piece of the routine I was able to figure out his jargon.  I know I'm right because he always gets so happy when I repeat something he says to him correctly.

He's yelling, "Turn it on!!".

Because he can't just have all of our lights on, he needs everyone in the neighborhood to have theirs on too.

Public Nuisances

Dear Stranger in the Children's Tent,

Last week we both had the brilliant idea of bringing our children to the Lobster Festival.  What we were thinking is beyond me.  I noticed that you ended up in the Children's Tent like we did, as well as about thirty other kids.  It was mayhem in there, if you ask me.

And why places haven't given up on having public train tables are beyond me.  They are, honestly, the bane of my existence.  I'm sure you don't have those struggles.  The struggles of having a child with Autism and OCD anywhere near a train table that could be touched by other little fingers.

However, I was proud of Brian as I watched him flit from one end of the tent to the other, not knocking over any toddlers, taking turns with the racetrack with two other boys, and not ripping trains out of anyone's hands.  I was thinking that maybe this would finally be a successful outing.

Until he did rip a train out of your preschooler's hands.  I hope you noticed that I immediately engaged in the situation and made my son hand the trains back to your child (yes, I had to pry them from his death grip to do so, but we did it).  I'm not sure if you noticed, as you instantly turned your back on us, that I had to sit with him folded up in my arms and legs as he screamed and thrashed.  I'm guessing you thought that he was just being a brat.  That wasn't the case at all.

He had left the trains on the track because that's where trains belong.  When he saw your daughter placing them on the grass, that was very hard for him to bear.  He has autism.  He has OCD.  One could argue they go hand-in-hand, however I remember Brian's autism before he was so strict in his routines so I have to argue that his OCD now classifies as it's own entity.  He is physically hurting when he can not set things right or finish a routine.  Spend thirty seconds with him during one of these moments and you can feel the pain yourself.

It's not a fun thing to hold your eight-year-old child in the middle of a children's tent screaming his head off.  It's a scary thing that I could barely hold him and the truth is setting in that when he is that angry he is becoming stronger than me already.  It's a sad thing to be in a sea of fifty people and have not a single person show compassion.

However, this letter isn't about that.  It's about the fact that I calmed my child down.  We stood up to leave the tent when he looked over and saw your daughter had placed the engine and two cars back on the grass of the table.  Your daughter was on the other side of the table looking at the tracks you were putting together.  Brian reached for the train and I let him BECAUSE YOUR DAUGHTER WAS NOT HOLDING IT ANYMORE.

You looked over and said loudly, "He took your train again!".  Your daughter hadn't even noticed or cared.  You then repeatedly said that line several more times, never looking me in the eye or asking me.  I know because I stood there drilling a hole in the top of your head with my eyes.  How dare you try to cause another scene?  Try to cause pain for my child again?  Try to cause pain for me as well?  Because do you know that a piece of my heart breaks every time I feel that hurt inside my child?  I let my child put the trains back on the track and move them around it several times until he looked up at me with a smile.  I asked him if he was ready and he stood up and held my hand and skipped out of the children's tent.

I'm so glad you didn't try to get my son to give back those trains because I really don't need a restraining order placed on me at this time.  It wouldn't look good for me professionally.

Thanks again for your utmost understanding and compassion.  It gives me so much hope for humanity.

-Brian's Mama and Defender

Letting Go of Ideals

When you have children you have to let go of ideals.

You might have pictured you would easily give birth with no pain medications needed, breastfeed with ease, and would never watch your child watch television.

Sometimes those ideals happen for us, making us very happy.  

Sometimes they don't.

Sometimes the real world comes into play.

Sometimes you have to let go of control to experience the true joys of having a child.

We just recently moved into a beautiful home (we're so happy!) and I wanted to make sure it stays beautiful (I can see all of you autism Mama's shaking your head with laughter right now).

The first week we were here the boys took their first bath.

I walked in to find bubbles all over the walls and the marble floor.

My very first instinct was to yell.  To take them out of the bath and make them help me clean up the mess.

However, I'm so happy I was able to stop myself and take the moment in.

My boys were laughing.  

Corbin would throw bubbles at Brian and Brian would laugh.

Brian would then reciprocate and throw bubbles back.  They would both laugh.

They took turns using the monster squirters to squirt each other.

They were playing.

Nothing, nothing, nothing, nothing is more important than that.

Tomorrow Is A New Day.

"I wish I never had a brother with autism!"


I can't believe how those words always cut right to my heart.  I think I'd rather hear "I hate you" than that.  My eyes instantly water and my mind begins racing and I just feel like I'm failing somehow.

To be fair to Corbin and his emotional outburst, it was a really hard day.  Autism and OCD levels were through the roof and I felt like I had lost every bit of sanity and patience I could muster up.  I was barely holding it together and felt like screaming at the top of my lungs too.  I can't imagine what my 9-year-old was feeling.  (And let me tell you, Brian's moods exacerbate Corbin's moods.  He wasn't no angel today either.)

I started to write a super-long post about all of the incidences today that included eloping, screaming, crying, gastrointestinal issues, self-injury, repetitive door-closing and light-switching, and high-pitched shrieks.  However, reliving it through writing was just depressing me even more.  So I'll do like Emerson and wait for tomorrow to arrive.  It is a new day.


Finish each day and be done with it. You have done what you could; some blunders and absurdities have crept in; forget them as soon as you can. Tomorrow is a new day; you shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.

That Moment

It's moments like these that make me so incredibly proud of the boys I am raising.

We were at the parade and a float had handed out freeze pops to all of the kids along the route.

Brian was having trouble figuring out how to get the popsicle from the bottom.

He didn't whine or ask for help.  

It was noisy and there was so much going on, that even I didn't notice his struggles.

Yet, I looked over and there was Corbin holding up the bottom of the popsicle for Brian to get.

Holding his own popsicle, waiting to finish it, after he helped his brother with his.

I am so proud of that compassionate, helpful, caring little boy.

End of the Year Madness

The past few weeks I've had so many of my clients' parents approach me with concern over the fact that  their child has recently been regressing.  A ton of the children I work with have sensory needs and so I repeat the same lines over and over again.

"I know it's scary and the worst feeling when your child regresses.  However, we see this all the time at the end of the school year (and also before big holidays).  All routine is being thrown out the window.  Your child craves and NEEDS routine to feel safe and secure and to be able to learn.  He (or she) is already ready to jump into fight or flight mode at any second because they can't filter out and make sense of all of the stimuli in their life.  Now, on top of that,  we're taking all routine away from them as field trips are planned, extra assemblies are given, and curriculum slows down.    I know it sucks (that's my professional language) but it'll get better again soon."

I'm so damn smart when it comes to other people's kids.

However, the past week Corbin has been driving me up the wall.  He's unable to play family games because the second he thinks he won't win he has a complete screaming fit and then hides and won't talk to anyone for half an hour.  He is just pushing the limits with everything and flipping out at the drop of a hat.

What Corbin has been looking like lately.

And I just keep freaking out, thinking that he is turning into a brat!

All of a sudden, as I was waiting Corbin out after a meltdown that had him hiding under a pile of blankets in the livingroom, it just hit me.  My child is regressing.  It's the end-of-the-school-year regression.  Be firm, be consistent, and he'll come out of it.  It's not the end of the world.

Sometimes I forget Corbin has the needs he does because I'm so ultra-focused on Brian, whose needs are so much more evident.  Yet Corbin has had sensory-processing difficulties his entire life as well as anxiety (and unintegrated reflexes and facial agnosia and speech delays and phonological awareness difficulties and auditory processing deficits and on and on).  Any child that would come into my practice with those same needs would be having regressions right now and I would expect it.

It's so hard to wear the occupational therapy hat at the same time as the Mama hat.

However, I'll go to bed happily tonight knowing that my child is not a brat and that given some love, patience, and consistency he'll soon return to his charming, know-it-all, silly, loving self.

That's What I Wish.

Brian was lying on the couch watching Disney Jr. as I lay there rubbing his back and giving him deep compressions and ear pops.  Yes I was doing all of those things at once, takes years of practice of calming a boy after sensory overload.

We were in the middle of a cook-out at a house that we had never been to before.  The hostess was kind enough and knowledgeable enough (being an ed tech with children with special needs for years) to offer us free reign of her home, "whatever you need for him to be comfortable."

I wasn't happy with sitting in the middle of the livingroom as the party continued on outside.  I felt a tiny bit ridiculous as it was a new group of people that I was trying to make a connection with and instead I felt like we were ostracizing ourselves once again.  Autism is a funny thing in that it makes the whole family become secluded, not just the individual that needs the quiet and routine to feel at peace.

I honestly was feeling sorry for myself.  I felt like I shouldn't have come, I had made it known that this was going to be a difficult situation.  I was upset because on top of the sensory overload Brian was experiencing he also needed to have a bowel movement and that was making him more cranky. I couldn't leave him alone in the house, like I would've been able to do with most other 8-year-olds, because I was worried he was going to roam into the bathroom and have the said bowel movement and then clean himself on the walls, towels, and whatever else he could get his hands on. Because that's the reality of where he is still at with bowel movements.  Generally he won't have a bowel movement anywhere but home but I wasn't going to rely on that.

Then Corbin walked in and plopped himself in front of the television.

 I looked at him and said, "Corbin, please go outside and play.  We're at a cook-out, you do not need to sit in front of the television."

"But Brian is!!"

"Brian is having a hard time and he needs this to just chill for a little bit.  We'll be back out in a minute."

"It's not fair!  I wish I had autism!," he muttered under his breath as he stomped his feet back out towards the door.

It's not fair.  None of it is fair.  We've had this argument time and time and time again and my heart doesn't stop breaking for both of them, and for myself time and time again.  Again and again I feel like I'm failing my children because I can't always see autism as a blessing like I see other parents doing.  Again and again I find myself wishing it away.  And again and again I feel like I'm leaving Corbin behind to figure things out for himself as I struggle to make the world an easier place for Brian.

Does this get easier?  I just feel like I continue on through this cycle of acceptance and grieving over and over again, never really finding myself at the place that I am okay that this is my life.  Go ahead and criticize me because of some stupid idea you have that if I don't fully accept autism that means I don't love my child.  Any one who knows me and my boys would never question how much I love them.  My love for them does not stop me from just wanting and wishing that we could have a life where we could go to a cook-out and I could sit back, have a drink, make new friends and laugh, and watch my boys running and playing with the other children.  Just one afternoon with my whole family and not have to worry and be on my guard and have to watch my child every second of the get-together.  That's what I wish.

What is Autism?

"What?? He can't be 8! That's impossible."

That's what I heard a neighborhood boy exclaim after asking Corbin how old Brian was.

I seem to find myself in these spots often and I inched closer to the open window to hear what Corbin would respond.

"Yes he is 8!  It's because he has autism!  AUTISM!" yelled Corbin who seems to be getting more and more angry about having to explain it over the years.

"Autism?  I don't know what that is," replied the little boy.

"It's just something he has, okay?  It means that when he is a kid, he acts like a baby.  When he's a teenager, he'll act like a kid.  When he's a grown-up, he'll act like a teenager.  And when he's finally a really old, old person he'll act like a grown-up."

I had never heard Corbin explain autism like that before and my heart broke a little not really knowing what Brian's progress will look like over the years.  Corbin obviously believes his brother will obtain full speech abilities and independence, and I hope for that as well.  However, the years of autism and slow progress sometimes make me feel like a cynic.

I didn't interject but later Corbin came in and asked if I heard the conversation.  I told him I did and he asked me, "Was that right Mom?  Is it like he is a baby now?"

I kissed his forehead and told him I was proud of him for taking the time to try to explain autism to his friends and then I said, "I know Brian can't talk very much and that is sometimes why he seems like a baby.  But we also know that he can add any three numbers together, spell really long words, remembers the directions to places even if he has only been there once, and can build some really awesome train tracks.  Do you think babies can do those things?"

Corbin smiled and kind of laughed, "I didn't even think of those things!  You're right Mom!  He's not like a baby at all, he is really smart with some things."

Yes, he really is.  Both of my boys really are.

Most Improved Student

Brian was chosen as one of his school's most improved students.

Wow.  I was speechless when I pulled this out of his bag a couple of weeks ago.

Initially I was so proud of my little boy.  Since December he has become a pro at addition- now adding up to three numbers at a time.  He is writing words from memory, reading more words, and using much more language than he was previously.

Then, I started to become very proud of his school.  Proud that they made the changes I fought for so he could make this growth.  Proud that they were using new curricula with him that was making a huge difference in the way he was learning.  Proud that they started realizing his potential and pushing the academic stuff.

And so extremely proud that they chose my little boy who is "functionally non-verbal" and has "moderate-to-severe autism" to be a most improved student.  So proud they could look past those labels and see his growth even if it's not the growth of his typical peers.  His growth may not be typical but it has taken a lot of hard work on his part and I don't think there is anyone that could deserve it more.

Thank you!! You made one extremely proud mama.

Brian will be honored along with many other students from across the state of Maine on the field at a minor league baseball game.  That will be a whole other post! 

Walk for Autism 2012.

An Emotional Breakthrough

This isn't about autism but I feel like I need to share it with the world because it may have been the most amazing personal experience I've ever had.

I'm in the midst of a four-day Masgutova conference.  I'm a Masgutova addict, this is only my second conference, but I would just go to one every month if I could.

I'm not going to get into the technique much but the basis of it is you are reintegrating reflexes because our reflexes are the foundation for all learning that we do- social, emotional, cognitive, etc.  If your reflexes are unintegrated you may find yourself in protection or survival mode and when you are there you can not learn.  You may have learned compensations throughout your life but you are not doing it at your highest efficiency.  Please visit www.masgutovamethod.com for more information.

Today we were focusing on an important reflex, tonic labyrinthine reflex (TLR).  I had been waiting for this reflex because I already knew it was off.  My partner couldn't elicit the right response from me and I could feel it in my body that it wasn't right.  She kept working on me and I started to become increasingly agitated inside of my body.  I felt like everything was bouncing around inside of me and it was exactly what I use to feel when I would start having a panic attack.  However, I didn't mention it, because that's how I am.  I don't share, I shut off, and I bottle it up.

However, our instructor noticed my difficulties and come over.  She tried to break it down and even broken down I couldn't get it.  Finally I just blurted, "I don't feel right.  I am feeling panicked and I'm losing sensation in my fingers."

She was excited for the teaching opportunity I was giving and asked if I wouldn't mind being a model for the class.  I didn't hesitate, I was ready for this to be fixed.

I went to the front of the room and she started working segmentally on me.  I could not for the life of me get it.  I was feeling more and more panicked.  She asked me what I felt like and I said that I was on the verge of tears.  As soon as I said it, my eyes watered up.

She asked me to think of a color.  I replied, "Blue".  She asked me to think of an age.  I paused for a second and was thinking to myself, "Age of what?".  I had no clue where she was going with it but my gut told me to say "22".  So I went with it.

She mentioned that though we were working on a reflexive level we are touching on so much more.  When a reflex pattern is stuck it is often tied to emotions.  Most likely this reflex was integrated at one point in my life but because of some sort of trauma I went into protection and became stuck there.

She told me to tell my 22-year-old self that it was okay.  That I was safe now.  That she did a great job of protecting me and now I'm in a wonderful place and have grown to be a wonderful woman.  She could let go.

My eyes watered before, but at that point the tears started falling.  I had no clue where she was going when she asked me the age.  But my body knew.  I was in a horribly abusive relationship since the time I was 17.  When I was 22 I hit the wall.  There was one particular episode with my ex that was horrible enough for me to finally snap out of it and say, "That's it."  It still took me about six months later to leave (I was 23 at that point).  But I can remember the exact episode that I snapped out of it.  All of the emotions from then were just pouring forth.

She showed me a list of opposing reflexes to the TLR and told me to pick which one called to me.  I picked the Moro and this was on a bit of a cognitive level because I do know the Moro reflex is one of our most primitive and plays an important role in feeling safe.

She started to work on my Moro and though my body seemed to understand this reflex it wasn't very strong.  She asked me what my 22 year old self needed to feel safe.  I said, "A coat of armor".  She told me that she had one of those handy and to give it to my 22 year old self.  She then did the movements with me again and I felt this amazing strength come from my core and radiate out to my limbs, yet I felt like I was releasing zero effort.  It's so hard to explain but it was extremely profound.

I sat back up to work on my TLR and BAM!  I had it.  I was safe, confident, my body knew where it's planes were.  And I could do it without even thinking about it and without any effort.

She asked me how my 22-year self felt and I said, "She's relieved, she's gone."  She said give her a gift that is blue (going back to the color she asked me about earlier) and I just blurted out, "The ocean".  All my life the ocean has been my go-to place for me to clear my mind.

I got off the table and I floated back to my seat.  The rest of the day (7 hours later now) I have just felt this amazing inner peace that I have never felt before.  I am calm.  It's so hard to explain but it almost feels like I'm on a muscle relaxant or a pain reliever.  I have never experienced this feeling of calm before.  Ever.

This is my second Masgutova course and my children have had Masgutova work for years but this was the first time that I experienced how profound it can be on myself.  For the past seven years I have had therapies, tried medications, treated with diets, been diagnosed with depression/anxiety/PTSD all because of this relationship I had.  This whole time my body and mind has been in protection.  And this is the first time I have felt any relief.  Like I just let go of an entire load and I'm free.

As I said in the beginning, I know this is off topic.  I know that it's a little "out there".  If I was reading this without the experience I had today I may have rolled my eyes and been skeptical.  However, I experienced it.  And it's so profound that I just had to share.

WOAH!

Last night was Autism Awareness night at the Portland Pirates.

At one point of the night Brian made me aware he needed to use the potty.  I brought him in with me to the women's bathroom.

He threw his hands up in the air and yelled, "WOAH! IT'S PINK!".

I have never laughed so hard in my life.  The walls- floor to ceiling- were a hideous shade of pink.  He took the words right out of my mouth.

Love when my "functionally non-verbal" little boy does things like that.  24 hours later and I'm still beaming about that phrase.

Not born with it.

There's a new "campaign" going on in the facebook world.  

"NOT born with it."

Parents from all over the world are sharing photos of their children with a little bit of a story.  A lot of parents are choosing to share photos of their child before their regression and following diagnosis.

Here is my 1 in 88.  NOT born with it.

At five months old.  

Hamming it up for the camera.  

Loving his Halloween costume. 

Cooing and babbling to the photographer and anyone who came into the studio.

 Loving attention. 

 I got dozens of shots from this shoot with this engaging little monkey.

In fact I have hundreds of similar shots from his first year of life like this.

He was not autistic.  He was not born with autism.  

This is my precious boy at 7 years old.  

Photo shoots result in dozens of shots of this vacant expression and low tone mouth gaping open.

Photo shoots result in crying and tantrums.

He won't respond or look at the photographer.

The smiling shot is a rare treasure among hundreds of photos like this one.

He now has autism.

Something happened to my boy and to thousands of other children.

My boy was not born with autism.

It's Autism Awareness Month. 

Start becoming aware that many children with autism were not born with it.

Start becoming aware that the government seems not to care.

Please visit the Autism Action Coalition and write a letter to your representatives urging them to recognize autism as the national health emergency that it is.

Sixth-sense, Mommy-sense.

A while ago I was at the homeopath and I was talking about Brian and his lack of sleep at the time (he goes through cycles).  I told her that I use to wake up every time he made a noise but lately I will wake up and he's downstairs watching a movie and I panic realizing I have no clue how long he's been up for.

I was probably even tearing up a little bit while I was telling her this.  I love to put guilt trips on myself.  She looked at me calmly and said, "Heather, you are so connected to those two boys that I have no doubt that you would wake up if either of them were in danger.  Your body needs sleep, don't feel guilty about it."

She made me feel better but I still had doubts.

Last night Brian was up around three.  I heard him get up and put on a movie but then I fell back asleep.  I woke up around four, out of no where, knowing something was wrong.  I sprung out of bed and ran into the laundry room because for some reason I knew that was where Brian was.

There he was on shelf four of a five-shelf unit I have.  It's probably about six feet tall.  He was trying to get to some candy I had stashed up on the fifth shelf.

Holy shit.  That's all I can say.  I have no clue how he get up there and I don't think he would've made it down safely if I had not woken up.  I'm so thankful for that sixth sense, mommy-sense.

There's no doubt about it, that little boy and I are connected.  My homeopath knows what she's talking about.

They Get It From Me.

It's no secret that I'm a strong believer that both genetics and environmental factors play a role in Brian's autism.

Sometimes, it's blatant that there has to be some sort of genetics.  At least when it comes to the sensory-processing pieces.

Like, when I absolutely have to wear noise-cancelling headphones to do homework (oh yeah, did I mention that I went back to school this semester because I had such a firm handle on my already busy-enough life?) because I can not, for the life of me, filter out the noises in our home.

Thank goodness I have a small enough head to wear the boys'.  Now that's a style I'm not sure will pick up anytime soon.

Photo Shoots & Autism

Every once in a while I get it in my head that I want to attempt a photo shoot again with the boys.  I buy them new outfits, I get so very excited thinking about how cute the pictures will be, and I deliberately plan on how to keep Brian well-rested and happy leading right up to the moment.

Of course the reality of it is that the new shirts turned out to be too scratchy and last minute have to be traded for black t-shirts.  Brian's stitches won't dissolve so even though I planned the shoot for six weeks after the incident they are still there.  And nothing, not even a lollipop, a train ride, and swimming, will make Brian smile.

The results:

Why the *$%@ are you  making me do this?

Oh, you're going to try to bribe me with a lollipop?  I could roll with that.

"I hate this hat!!!"
(Wish we got a picture of him when he tried to bite his vest off.  Yes, I said, bite it off.)

My favorite pic of Brian.  Corbin on the other hand looks like a goofball.

They're both looking at the camera.  Hallelujah. 

How perfect would this be if Brian was looking at the camera.
Instead he just noticed that Colin came into the room with lollipops.

Not too shabby.  Could be worse.

I am too damn cool to be doing this photo shoot.

Who loves being in front of the camera?

What a ham.

Who needs smiles?  This picture is PERFECT.
Love these boys, just the way they are.