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Friday, October 17, 2014

ABC..Who Is As Smart As Me?

So before airplanes, banners, and aquatic life (thanks to Nemo), Mason's very first interest was letters of the alphabet.

When he was very young, probably around 15 or 16 months old, while typically developing children were carrying around blankets,  Mason would carry the letters "O" and "S" (from a puzzle) around with him wherever he went.

Letters were the first objects he was ever able to associate a label (or name) to. For example- if I asked him to identify letters of the alphabet, he could point to them. But he would not directly point to mommy if asked at that age.

Right before his second birthday, he could identify all letters upper and lower case.

The amazing thing is I really didn't sit and work on learning the alphabet with him.

Honestly, we had too much to work on.

He was not talking at all, cognitively and socially he was so far behind his peers.

The alphabet was like...the farthest thing from my brain.

But by his second birthday, I realized he had a very strong interest in letters when he could put the letters together to spell his name.

Here he is right before his second birthday showing me letters

//www.youtube.com/watch?v=APpF8PpYQbs

Here he is at 22 months old spelling his name on a speak and spell

https://www.facebook.com/video.php?v=10151442130344553&set=vb.741774552&type=3&theater

So...you get the point.

My child is brilliant.

Ok moving on....

Right when his language took off, at a little over two and a half years old, Mason could read his name.

He would see it in different context and recognize it right away.

He also started saying the alphabet backwards.

Yep-I kid you not.

My kid can say the entire alphabet backwards from Z-A and if you don't believe me...ask my mom she was there!!!

I couldn't believe it when he did it-it was the funniest thing.

It took me a few letters figure out what he was doing but whth every letter he said-I held my breath in anticipation.

Was...he...like.......seriously going to go all the way up to A?

Yep he did.

Well...color me impressed.

He has done it multiple times-all random and usually when he is tired.

Lately he has been asking me to spell EVERYTHING.

Now he can recognize a few words from knowing how to spell them.

His teacher at school even told me he can spell some of his friend's names at school. She also told me he does not wait his turn when another student is asked to identify a letter during circle time.

That seriously made me crack up!

The really amazing thing he did though-was a few weeks ago in the bathtub, he started to recite the alphabet-but he added a word along with each letter.

A-Apple
B-Ball
C-Car

And so on and so on...

He did it all the way to the letter Z-Zebra.

A few days later he did it again while getting ready for school, but this time he said the letter of the alphabet but made the sound of the letter.

A-Ah
B-Buh

etc...

On the way to school, I decided to try something.

"Mason what does fish start with? FFFFFF"

"F"

We did this all the way to school-he got every word I said right!!!

When we arrived at school, I wanted to find out what exactly they were learning at school.

Now before I go on, I don't want any readers  to confuse teachers with the therapists.

Mason is in a regular classroom for part of his day with children who do not have developmental delays.

He has 2 teachers in Pre-K that are not involved in his therapy-they are Pre-K teachers.

ABA therapy is what he gets pulled out for where the therapists work on language/speech and social development and at this time, there is nothing academic that he works on with them.

"So"...I casually say to his teacher...

"Are you working on letter sounds in class? Mason has really been into making the sounds of letters of the alphabet"

"Oh yes", said his teacher.

"We work on it throughout the week"

The picture was clear for me now.

"Oh",

I smiled and laughed.

Of course there was an explanation...right?

"Mason was saying the alphabet and he was able to associate each sound  and a word with every letter of the alphabet. I was wondering where he learned it"

His teacher looked at me and laughed.

"Well I don't know what to say. We are only on the letter C"

Turns out he learned it all on an app he plays with at school when he gets breaks.

Smarty Pants,







Friday, October 10, 2014

Wahhh Waahhhhhhh

I am beginning to see that my son is very VERY stubborn.

Today's topic???

Potty Training.

I have gotten TONS of advice and suggestions.

Most people have asked if it would help if Mason saw their child on the potty to encourage him to go.

Um no.

The problem is he knows what to do but refuses.

So watching someone else's kid won't really help.

He will sit on the potty for an HOUR sometimes and not go at all.

As soon as I put on a diaper?

He goes!

WTF???

Right now I am trying the typical reward based training (go to potty and get a reward) which is very very similar to ABA which is the therapy Mason receives at school.

Scott made a really cool board complete with an airplane and banner.

The reward???

APPLE JACKS!!! FROOT LOOPS!!!  Mason's favorite cereals that he basically never gets because...uh...he would eat the whole box in one day.

Today on the way home, I talked about the potty.

I wanted potty on the brain..Apple Jacks on the brain.

I was trying to pump him up!

At one point I shit you not, Mason LAUGHED AT me.

I was still excited...hopeful...

Here is his potty board.



HE. WAS. ECSTATIC.

The airplane with the banner...well.

OMG!

The kid could not contain his excitement.

The Froot Loops! The Apple Jacks!!

It was like friggin Christmas...

Until I explained what was happening.

"Mason if you sit on the potty and go, you get Froot Loops and Apple Jacks!!! Do you want to try?"

Mason looked at me.

It was kind of like this...






Yeah-I got the side eye.

He then pondered.

I saw him look at the Froot Loops and Apple Jacks longingly.

He looked at the potty.

I waited...hopeful...on the edge of my seat.

Would it work the first night?

Would he go?

He pointed to the cereal and sang his little song that he made up when he wants something.

"Whoo Hoo Ha. Ah Hoo Ha"

His beautiful brown eyes burned through my soul as the silently pleaded...

Give me the Apple Jacks Mommy. Give them to me ppllllleeeeaaassseeeeee. PPPLLLEEEAAASSSE

The guilt.

THE GUILT.

But I stuck with the plan.

"You have to go potty for Apple Jacks Mason."

There was a long pause.

My eyes pleaded back..

Wannnnnt the Apple Jacccckkkkks. Peeeeee in the poooottttttyyyyyyy. Plllleeeaassseeee.

Mason looked deep in though.

I know he is only 3 but I could tell he was contemplating how badly he wanted the cereal.

Seconds went by, but it seemed FOREVER!!!

I have been longing for the day when he says to me "Potty Mommy!!"

I waited...watched...

His  little face turned to me and he looked me in the eye.

In the most matter of fact voice you could ever hear a three year old muster

I heard the following words...

"Sit sofa with Cheerios please"







Alrighty then.

Monday, September 29, 2014

"Autism Doesn't Define Who He is"

Yep....I hear that phrase over and over.

"Autism Doesn't Define Who He is"

I used to want to shout that shit from roof tops!

Mason is more than "a boy with autism!!!"

He is loving, caring, smart, and beautiful! He is more than his autism!

Well fucking shit. You know what dawned on me?

You can be all those things and be autistic.



You can be autistic and be smart.

You can be autistic and be loved and love back.

And you can be autistic and you are just as beautiful as a neurotypical child.

Autism doesn't define who he is.

It doesn't? How so?

How does a neurological disorder not define someone?

How is the fact that he needs a lot of help right now not a part of who he is?

I eat, sleep, and breath autism.

And I am just supposed to pretend it is not a big part of who my son is?

Autism does define Mason because...he is autistic.

Just like he has brown eyes.

His brown eyes define him.

His smile defines him.

And being autistic defines him too.

And honesty as much as I try...I really could not imagine him neurotypical.

I mean...I imagine how I think he would be if he were NT.

But then would be be Mason?

The Mason I love?

He would be a different Mason.

And why would I want a different Mason?

On the surface, it is easy to want a different Mason.

I don't want him to struggle. I want him to be able to grow into an adult and not depend on me-not because I don't want to help him...but because it just seems like it would be easier for him.

I want him to play with his cousins. I want him to have fun at his birthday party. I want him to enjoy high school.

I want I want I want.

Notice a theme?

All about me here people. Alllllllll about me.

Why?

Mason is happy,  He is loved.

I love him more than anything ever.

Being autistic DOES define him.

It defines everything about him-and guess what?

THAT IS OK!!!

I say this to myself. I said it tonight to myself.

And I will say it to anyone.

It needs to be pounded into my brain.

He is autistic and he is everything that kids without autism are except he is way cooler.

You know why?

Because he sees things that we don't see.

He makes adults see situations in ways that they never would if they didn't know him.

He is only 3 and he has truly taught me so much more than I ever imagined.

Being autistic is not a "label".

Just as having brown hair is not a label.

Autism does define who he is...

Because...

He is Mason.

My Mason Man,


Mason Man








Sunday, September 28, 2014

Acknowledgement and Acceptance

I am starting to realize there are possibly many different phases of acknowledgement and acceptance. I know I am supposed to be the one to guide my son, but sometimes I feel like he is guiding me.

I honestly have no idea what the hell is going on, and it is very scary.

The first phase of acknowledgement for me was when I had to stop listening to everyone around me, and acknowledge that Mason's development was different from other kids.

He was behind.

Very very behind.

At 17 months old he was developmentally a 7 month old.

Still...it was very easy for me to play the "he will catch up game"  andl do what I was "supposed" to. (As opposed to the living in denial game)

I contacted Early Intervention. I researched developmental delays. I decided it was best to have him evaluated for autism and my gut instinct was correct.

YAY I am mom of the year...

Well...not really.

At his autism evaluation when he was one and a half, I heard the terms "high functioning" "mainstreamed for elementary school"...ready for kindergarten to be exact.

I go back and read some of my blogs written... days after Mason's diagnosis.

I truly believed this would all be gone by his 5th birthday because I did "the right thing"

And here I sit.

Here I have sat for the last few weeks thinking about Mason's 4th birthday which is in a few months.

Never in my wildest dreams did I imagine I would have an almost 4 year old that did not understand his upcoming birthday. That did not understand holidays.  That had NO understanding of social situations appropriate for his age.

None of this ever ever occurred to me.

Wasn't this all supposed to go away because I called Early Intervention?

It is a new acceptance.

I see the autism now-there is no denying it is there.

When he was first diagnosed at 1, it was so easy to pretend this would go away.

Now at 3, I see Mason line up his toys instead of play with them. I see him hyper focus on airplanes. I see is language delay-and I mean is it really even a "language delay" anymore?

I feel like the "he is delayed" ship has sailed...and it all comes down to one thing.

Mason is autistic.

He is not "delayed".

He is not "behind".

He will be autistic his whole life.

And as embarrassing as it is...I am very much struggling with this.

He will be a teenager one day. And then a man.

A grown man with autism.

How much of my support will he need? I mean DAMN when he is 30, I will be in my 60's!!!

I am scared thinking about it.

Not because I don't want to deal with it. I mean it is fucking hard and it is emotional. But whatever is in the cards for my family...well...I  am ready.

I will NEVER feel like Mason is a burden to me and with our daily challenges...I just do my best to suck it up and say to myself that we can do it together.

I just want, as all parents want, him to have a perfect life.

But what is perfect anyway?

Is he happy not being able to pick out a theme for his 4th birthday in a few months?

Is he happy not understanding Santa Claus?

Is he happy playing alone instead of with peers?

I can answer this question.

Yes.

He is a very happy child.

He is happy when we sit on the sofa together, and he pulls my face to his and makes a little squeak sound with  a big smile on his face.

He is happy when he sees anything that has to do with airplanes.

He is happy when he is with his family.

Seriously...the kid is fucking happy.

So why am I not happy?

Why am I sad and scared all the time?

Have I not yet accepted that he is not Neurotypical?

It seems like that way to me and so along with everything else...I have a lot of guilt.

Sometimes I look at Mason, and I swear his eyes tell me everything will be OK.

He is walking ME through this journey...this world that I know nothing about that he lives in every day.

Sure...I know about autism because of what is on the Internet...but like seriously who writes this stuff?

People without autism?

What I need to somehow do is stop wishing Mason was like every neurotypical boy his age that I see.

He doesn't understand Santa.

OK...so what?

He likes airplanes.

Embrace Airplanes.

Santa can fuck off.

Well...maybe that is not the way to go...

But... it is a start.










Thursday, September 4, 2014

Lets Pretend!!

So as many of you know (or possibly don't know)...imaginary play is a very important part of childhood development that typically begins around 18 months of age.

Imaginary play typically starts out with children mimicking what their parents do-talking on the phone. Pretending to mix things in a bowl.  The skill will develop further into more advanced pretending- dressing up like super heroes, wearing costumes. Making up stories.

Seems pretty normal right? Probably something a parent really never thinks about.

Kids just play...

Right??

Well, my kid doesn't really play and that is not unusual for a child on the autism spectrum.

Autism is a spectrum disorder so I am sure there are children with autism who imaginary play, but the majority of young children diagnosed with autism do not have imaginary play skills.

The CDC recommends speaking with your child's pediatrician at age 3 if a child does not play pretend or make believe.

I remember getting those stupid news letters from Baby Center.com telling me that now that my kid was 18 months to start to look for imaginary play-they used the phone and the cooking as examples.

I waited and waited and...nothing.

Anywhoo-When Mason went to his autism evaluation,  during Autism Diagnostic Observation Schedule , the neuropsychologist who was evaluating mason focused a lot on Mason's lack of ability to pretend.

She wanted him to pretend a block was a flower.

I sat there thinking to myself he didn't even know he was supposed to sniff flowers. I actually wasn't sure if he even knew what a flower was. How would he know to pretend a block was a flower? He didn't even play with blocks!

The whole thing boggled my mind. Are 1.5  year olds really supposed to know how to do that?

She also wanted him to wash a baby doll.

Again I sat back...dumbfounded that these were skills he should have by now.

I thought of my niece and nephew the same age. My niece was putting her Mickey Mouse toys in her stroller telling us all that they were going to work. My nephew was shooting imaginary spider webs from his wrists at me, pretending to be Spider Man.

Ok...I guess sniffing a block and washing a baby isn't that big of a deal.

But...it was to me.

Mason seemed so far from that. And it made sense why.

Mason, at 21 months I was told, was developmentally a 9 month old.

Here are some "highlights of the 4 page evaluation






So...pretty disheartening. Especially to see it right in your face in black and white.

Even last March when he was evaluated by our school district...I KNOW he has autism, I know he is severely developmentally delayed. But to see it written out on a big screen...it feels like the day we confirmed he had autism all over again.

It makes me dizzy and I feel like someone is punching me in the stomach over and over while stomping on my heart.

But enough of the being negative because that is not what this post is about!!

I want to share with everyone what Mason has done over the last few days!

There has been a whole lotta pretending up in here!

He is not yet pretending to be different characters, dress up, or make up stories but he IS pretending an object is something different.

So first he has been handing me various objects-cups, airplanes, hangers and putting them to my ear and telling me that it is various family members on the phone.

A few nights ago he handed me his cup and said  "It's TT" (but like imagine him saying it the way Johnny Carson was introduced 'Herrrrreeeee's Jonny!!")

I said "Hi TT!" and Mason yelled "Hi TT! How are you"?

It was so hilarious! Since then we have talked to various family members on airplanes, cups, cards. Whatever is around. And he always "lets me know they are on the phone" using the "Here's Johnny" voice!

Mason has also been making his toys dance. If we are watching a show, he picks up his toys (which normally he just lines up and stares at) and says "Dusty Dance" or "Shark Airplane Dance" and he proceeds to make them dance with the music.

While he does this, he does a nifty dance move on one foot.

He is also pretending to crash cars and make his airplanes fly in the air-as opposed to just lining them up which is very exciting.

I remember when he was one year old,  he was "playing" with a toy truck but he was just intensely watching the wheels go back and forth as he rolled it.

There was no real playing involved-such as when my niece would play with the same truck and fill the back of it farm animals and say she was going to the farm and then "drop them off" by dumping them out.

It is progress like this that makes me so hopeful.

Finally-he is pretending objects other than airplanes are airplanes.

Fruit snacks, hangers, You name it.

He makes them all airplanes!

He is able to use his imagination to think of one object as something else and I have to be honest, a year ago the ability to do that seemed like it was so far away.

Ignorance is bliss-it is a statement I think of probably once a day.

I seriously long to be blissfully ignorant autism...to watch my son develop and not think anything of him pretend talking on a phone  (other than "oh isn't that cute") as opposed to practically doing a back flip.

Autism has given me the ability to appreciate the small victories-at least by society's standards.

In our world, the small victories are the equivalent to winning the Super Bowl.

And I cherish every moment.








Monday, September 1, 2014

Looking Back...


I put these two pictures side by side because I am a big dork and I like to compare baby pics to pictures now-when Mason is 3.5

There was really no purpose other than to see if he looked the same as a baby as he does now.

I did not expect the wave of emotion to hit me like it did.

I look at the first picture-my peaceful sleeping little guy.

I guess he was a few weeks old in that picture.

I remember when he was a few weeks old, I thought about him turning 4.

I don't know why I thought of the age 4-I guess it seemed so far away.

I remember looking at his tiny squishy little body and thinking how one day, he would be able to sit up.

I looked at his little legs and were amazed that one day, they would carry him to walk.

I held his little hand and pictured him with a fork eating a hot dog, drawing on a chalk board.

I pictured Mason as a little boy without Autism.

I pictured him at 4 understanding what a friend was. Understanding his birthday, Christmas. Playing with kids. Maybe being interested in a sport.

I pictured him talking like other 4 year olds...developing language like any other kid.

In my head, my thoughts never seemed excessive-I was not picturing him as the next great sports hero or the future President.

I guess when I took that picture...my life seemed normal.

I look at the picture on the left.

I remember the feeling of being a new mom.

My new mom thoughts never included Early Intervention, an Autism Spectrum Disorder diagnosis before the age of 2, and 20 hours of therapy a week.

Now I just feel heart ache. Fear. Confusion.

I look at the picture on the right and I seriously feel like a lion circling him, to protect him from the outside and from autism.

It actually makes my heart and my head hurt.

I know when I took the picture on the left, I did not have these feelings...but... I don't remember NOT having them.

I wish I could go back to the short time where I happily watched my son grow and did not worry for oh all of those 6 months.

I am not saying people don't worry about their kids but I am pretty sure most people don't stare at their kid waiting for them to do what every other kid their age is already doing while anxiety grows and grows and grows.

I have never sat back and enjoyed watching my child grow.

I look at the picture when he was a baby and I see my dreams in that picture.

I look at Mason now at 3.5

I no longer see my dreams.

I see a little boy who needs me in a way I never imagined, and the responsibility of being his mom really really scares me.

My biggest fear is regret. 

I hope I don't let him down.












Sunday, August 17, 2014

I Really Don't Get It...

It is hard for me to look at another child and think to myself...

Why? 

Why my son?

What is the reason?

Will I ever find out?

I see videos on facebook of kids Mason's age (and younger!!!) participating in the ALS ice bucket challenge with their parents. These kids are totally aware of what is happening.

(As a side note-I really think the awareness being spread for any disease or disability-in this case ALS-is AMAZING!!! Awareness is an amazing thing. It is easy to brush aside disorders and diseases if they don't affect an individual directly. I try to do the same with autism.)

I see  kids Mason's age age and younger. Cognitively they are so ahead of him.

It scares the crap out of me.

I have to be honest-I just don't want to deal with autism.

I know that individuals who suffer from ALS don't want to deal with it either.

I am not suffering. I don't know if my son is. But it is my job to advocate for him.

If I don't... then who will?

I don't want Mason to be a different person. I want Mason..my Mason...the same Mason that love and cherish...to be a child without autism.

I know there is this big neurodiversity movement going on where autistic adults get offended when parents of autistic children are not skipping through fields of daises, celebrating autism.

Maybe I will write about that soon because that is another subject that really annoys me.

I want my son to not struggle.

Is that really so much to ask for?

Is anyone listening?????

I would dump 1000000000000000000000000 buckets of water on my head for him.

And for anyone, for that matter.