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Friday, November 14, 2014

Crossroads

I feel like I have somewhat come to a crossroads regarding Mason.

When I first noticed his developmental delays, and then began to realize he probably had autism...I wanted it all to go away.

I read some statistic that a small percentage of children who are diagnosed with autism recover.

Recovery was my DREAM for Mason.

I did NOT want him to have autism...or be autistic.... Whatever the PC term is.

On  a side note, did you know there is all this drama in the autism community over crap like this??? Maybe I will write about it one day. I found it just as shocking as when I was pregnant and  found out there was a breastfeeding vs bottle feeding war. I thought people just fed their kids and went to bed

Ahem-anyway...

So I wanted Mason's autism to go away and I wanted him to skip off to kindergarten just like I did.

I read some of my older blogs and...I seriously think I sound dumb...but it is because I was just uninformed.

The past two years I have learned a lot about autism.

I have learned that people with autism can be happy. People with autism can be self sufficient. They can marry. Or not marry. Just like neurotypical people.

Mason displays many behaviors that go hand and hand with autism.

Many therapies (not Mason's therapy but just in general) try to eliminate this behavior so that the child seems more "normal".

Example (one of many)-

He flaps his hands.

Good LORD does he flap.

He flaps when he is excited.

When he upset.

When he is anxious.

Some days I think he is going to fly away.

I can see how it would seem in everyone's best interest to eliminate this behavior.

It looks very odd and I am sure as he gets older, it will look odder.

Is that actually a word?

I am sure the flapping is distracting to others.

2012 Jill would have wanted flapping to fly away because it made the autism stick out.

2014 Jill wants flapping to stay...as well as any other behavior that is natural to Mason (as long as it is not self injurious) if it makes him feel good and secure and like himself.

Flap away Mason.

Here is where I stand today:

My goal is no longer to cure his autism.

That was actually a stupid goal and I cannot even believe I wrote about it at one time.

There is no known cure.

My goal is to make sure I provide my son with the tools he needs to live the best quality of life he is capable of living.

My goal is to be on my deathbed with no regrets on decisions I made for Mason and to know that I raised a child that felt happy, loved, and most important...never feel like he could not be himself.

I am sure there will be many days in the future where I cry.

When I ask why him?

When I throw my hands in the air and ask why this has to be so hard.

When I just stare at the sky and wonder why life has to be hard for him.

Hopefully he will understand WHY we put him in therapy and that he never feels that I tried to take away a part of who he really is...but that I wanted him to have the easiest life that was most possible for him.

I just hope with all my heart he knows my intentions and that he will never say I did something wrong.





Saturday, November 1, 2014

No Thanks!

This was Mason on Halloween yesterday.

                                                                                                                                                                

He basically made this face the entire time in his costume.

He doesn't like candy. 

He doesn't really "get" trick or treating.

He HATES costumes.

There was trunk or treating at his school and although the event was overall very adorable...I just couldn't shake the guilt I had.

Mason hated it. 

Too many people, 

Too many costumes. 

And SINGING!!! 

He was miserable...and honestly I was too.

As I watched the kids go by in their costumes and watched Mason just look like he wanted to be anywhere other than where he was, I just kept thinking over and over

 Why are we making him do this

Seriously. Why? He doesn't like it. 

Like I always do, I tried to put myself in his little shoes.

I know I would be pretty upset if I was forced into a situation that I wanted no part of, and that I found to be overwhelmed.

Who likes being overwhelmed?

The worst part of trick or treating at school was when he looked at Scott.  

" Sit sofa Daddy," he said with tears in his eyes.

I think that was his way of saying get me the hell out of here!

Mason does not understand holidays yet, and with this in mind, I can see how Halloween is just too much for him.

I want him to remember having fun as a kid.

I don't want him to remember his parents forcing him to put on crazy outfits and ask strangers for candy with no understanding of the purpose.

He has limited language and cannot tell me how or what he is feeling, but I can see it on his face.

I mean yeah he is autistic but he has a brain. He has thoughts. 

He just cannot tell me them.

Lately I have the following attitude about things

If he doesn't like it... I am not forcing him.

I am not going to force him to be like everyone else just because it is how he is "supposed" to be.

Halloween included.

We did not go trick or treating in the evening.

Mason did not have on his costume, and instead wore a pumpkin shirt.

He said boo to me a few times, and asked to see ghosts... and also dogs, cows and pigs.

While everyone and their brother was posting Halloween pics of their kids trick or treating, my son happily played with his airplanes.

He was happy, which is what is most important.

And so was I.








Thursday, October 23, 2014

Drumroll Please

Annnnnnddddd....

MASON USED THE POTTY!!!!!!!!!!!

He was very very scared when it was happening.

He totally knew what was happening-it wasn't like I just sat him down and he went by accident.

He clung to me saying "No potty no potty"

We looked at pictures of airplanes and blimps so he would calm down.

And he did it!!

And he is so so so excited now!!

YAY Mason!


Wednesday, October 22, 2014

Just Keep Swimming...

Ever pull away from your house only to realize you forgot something and need to turn around and go home?

Ever decide on the way home from picking up your child from school you need to stop at the store on the way?

Ever need to go to the bank before heading to grandmas?

All normal, every day occurrences...right?

They are.

For me though...unless I prep Mason a few hours before hand, they are moments of dread and anxiety.

Mason has developed one of the very common behaviors of kids on the spectrum...

If we are going somewhere and we do not go exactly from point A to our destination-he loses his mind.

It is really not fun.

Example- this afternoon when I picked up Mason, he told me he wanted goldfish for a snack. I knew I didn't have any so decided to stop at the store.

Dumb Dumb Dumb.

Mason FREAKED OUT when I got in the parking lot.

"No store No store. Bye bye"

He was distressed, distraught,

I could have kicked myself.

I tried to tell him I was getting him goldfish but it was too late.

We had not gone straight home.

I had anticipated it happening-I had a feeling of anxiety knowing I was going to the store.

I didn't know how he would react.

I guess I was hoping he would just really want the goldfish and walk in the store with me.

Nope.

I wasn't shocked or anything-this behavior is not new.

I just have to get better at prepping him for the change.

I actually am not doing a very good job of explaining how bad this can get but I really don't have the energy. Just believe me when I say it really sucks for me and especially for Mason.

I hate seeing him so upset and not really knowing WHY. I mean...I know why he is upset. He is upset we didn't go right home. But...WHY???

Blah.

A few weeks ago, we were going to visit my parents.

Mason could not WAIT. All morning long, he talked about seeing Jojo and Bobo.

I knew I had to stop at the bank on the way there, so all morning, I talked about the bank.

"First the bank, then Jojo's"

"No bank. No thank you."

I showed him pictures of the bank and then of my parents.

I explained over and over we were going to the bank first before seeing Jojo and Bobo.

I talked about the bank for 2 hours.

When we went to the bank, he was a little upset but nothing to horrible. He was actually really good and when we left he said "bye bank."

I have to get better at doing things like this. I am almost thinking of buying a tablet so I can pull up pictures to show him if we go somewhere last minute so he does not get upset.

 I don't know what to do. I cannot punish him for being distraught. I mean...he isn't being BAD. The situation upsets him and he is reacting.

And I don't know how to react to it.

So many of my days are filled with strategizing how I can accommodate Mason and not put him in a situation that will distress him.

I have to be honest when I say that it is really mentally draining.

But-it is what it is. I am sure it is harder for him than it is for me.

I watch parents put coats on their kids. Make k-turns with their kids in the car. Take their kids out for ice cream.

It all looks so easy, so normal.

All of those things are hard for Mason.

Having an autistic child is emotionally draining. I mean, I know having kids is hard in general. Kids are hard at this age.

It is just hard to watch him.

He is autistic and living in a world that basically has no understanding how the autisitc brain works-parent included.

Sometimes I wonder if he thinks we are all just a bunch of nuts.

But like seriously he has to practice putting on a coat all summer in therapy so that in the winter time, he will be used to wearing a coat and not melt down when I try to put one on him.

This will be the second year that putting on a coat will be part of his clothing tolerance drill. I actually thought it was mastered-last summer he practiced putting on a coat all summer and winter was great!! Coat and hat no issues like we had the year before.

This year?

It is like it never happened and we are starting all over.

I would do anything to be able to reach inside of Mason and know exactly what I am supposed to do.

I wish I could somehow telepathically connect to his brain to see what is going on.

Because through it all...the hardest part of everything-the no coats, the freak outs if you don't go right home, the delays, the repetitive behaviors- is feeling like you are on a totally different island from your child...and not knowing which way you are supposed to swim to his island to help him.










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