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Sunday, March 22, 2015

Something To Think About...

So I was at Target today buying some shizz for my new crib when I saw a mom and her son, who seemed to be about 12 or 13 years old, coming toward me.

They immediately caught my attention because I could tell she was leading him down the aisle-his hand was on the cart and her hand was over his.

Her other hand was behind his back and I watched her guide him.

I knew it was a mom and a son-  I don't think a non mom could have had the look on her face that she did.

He sipped a drink he was holding and they both walked slowly.

I heard her say over and over "I am so proud. I am so proud of you. Great job"

It was obvious to me she was praising him for walking through the store.

If a voice could beam, hers was beaming.

I looked at the boy.

He looked like any other teenager. Nothing physically stood out about him.

I thought of the many times people have said to me "Mason doesn't look like he has autism"

What is that supposed to look like anyway?

Annoying.

I don't know if this young man was autistic-I thought perhaps he was.

Their interaction together took my breath away.

I wanted to continue to watch and see how this mom interacted with her son. I wanted to see how he reacted to the environment.

I seriously wanted to hug both of them and tell them they were doing great.

Before being a special needs mom, I think I would have just thought "I wonder what is wrong with him" and went on my way.

Instead, I thought of how hard this boy probably worked to get to the point where his mom could guide him through the aisles of Target.

Probably countless hours of therapy.

We all go to Target every day.

I go like every week.

Mason loves Target and he is on the autism spectrum and he is 4.

I thought of "The Spectrum".

It is fucking huge.

If you have seen one kid with autism, you have seen one kid with autism.

Just because one child has very specific needs does not mean they are all the same.

Autism is a neurological disorder that affects normal development in social and cognitive development.

This can range from a person just being very awkward,  to the boy that I was probably uncomfortably staring at in Target today.

I thought of how much therapy he probably went through to be able to walk through Target.

Years? Years. It had to be years.

I listened to him say "Proud of me" to his mom when she said she was proud of him-his pronunciation of the words sounding similar to a toddler.

I wanted to run up and hug him and tell him how amazing I thought he was but I had a lump in my throat and tears in my eyes and I didn't want them to think I was a big weirdo.

One thing is for sure-when you are the parent of a child that does not hit milestones naturally...everything is a celebration.

I watched them walk away and hoped with all of my soul maybe his mom could sleep a little easier tonight. I hoped that this boy knew what he had accomplished was amazing and that being able to walk through a store could help him accomplish his next goal.

Every goal has a purpose-to get you to the next one.

Progress-no matter how fast or slow-is still progress and that goes for any disability not just autism.

I left the store and sat in my car for a minute to see if they were going to walk out, but then felt totally stalkerish and drove away.

I know that boy will never know me and never know how he touched me and he will never know how I will be thinking of him and cheering him on.

As parents of special needs kids we can never give up. Our lights at the end of the tunnel are very different but our goals are the same- ensure our kids get the best chance at life.

I really do feel like I know how proud his mom must have been of him.

And I was proud of him, too.







Saturday, March 14, 2015

More Positive Updates

So I am pretty excited about something that happend this week but in order to share, I need to bring things back to about a year ago.

It was the end of the school year and Mason's dad and I were at the end of the year picnic...that got rained out.

We instead were inside of the school room-it was jammed backed with teachers, students, and parents.

The school had set up little "stations" for the kids to take their parents to and do various activities.

As I looked around, I felt like Mason was the only kid who was not showing his parents the various stations.

To make a long story short- I watched kids the exact same age tell their parents what kinds of crafts they wanted to make, sit with their parents and talk about what they were doing or what they wanted painted on their faces by the very scary clown.

I was like literally in awe...kids really...can have conversations like that?

Now I have a niece and nephew the same age, so I was not completely blown away.

My niece has always had very advanced language skills-she started talking-and I mean talking not babbling-at 8 months old. By 19 months you could have a back and forth conversation with her. Just the other day she told my sister "Mom my brain can talk to me and I can answer back without talking" um...what almost 4 year old even says that? I am still trying to get my kid to talk to me, and she can talk to her brain. Alrighy then!

My nephew had a language delay as a toddler- he started early intervention at 2 years old and at 3 he qualified for speech with the public school. The funny thing about my nephew is that although he talked very late due to his language delay...there was never any question in regards to what he wanted. He could somehow talk to everyone, and everyone knew what he meant, but he wasn't talking. I cannot even describe it, but it was actually pretty funny. He could non verbally have a conversation.

So...when Mason turned 3...I had seen both sides-a child with advanced language and a child with a language delay who was otherwise developing typically.

So why did the social behavior of these 2 and 3 year olds in Mason's class shock me so much?

You can read about my emotional day here

So anyway-that was less than a year ago.

By three, children start to have conversational language-which is what I was witnessing.

Mason is now 4 and he still has no conversational language. He tells me his wants and needs but if I were to say, for example "What did you do at school today"...he developmentally is not there yet as far as language goes to answer that question.

I brought it up in a meeting I had at school with his BCBA (Board Certified Behavior Analyst) and the director of his ABA inclusion program.

The BCBA looked a little surprised-I guess that is the point of these meetings-to get these things in the open.

She said this is something we absolutely have to work on developing as far as language and I got the feeling that they were going to step it up a notch? (kick it up a notch? Isn't that from something?)

Anywhoo-

She asked me a couple of questions to confirm what I meant and I told her if I ask him how school was he does not answer. If I ask him what he did today, he does not answer etc...

He isn't ignoring me. He cannot answer.

That was about 2 weeks ago.

Fast forward to...uh..yesterday.

Every day since he has been 2 years old, I have asked him what he did in school and if he had fun and was always greeted by silence and a sort of blank stare.

But on Friday...something amazing happened!

"Mason did you have fun at school today?"

"Yeah"

ummm??? hu????

"What did you do at school today"

"Tracing"

Holy What?????????????

"What else did you do?"

"Scissors"

My heart like jumped out of my chest.

He answered!!! I could not believe it!! My eyes filled with tears. I looked at him in the rear view mirror and just wanted to give him the biggest hug. And it was no big thing to him.

"What do you want to do after school?"

"Want to go to Shop Rite and get Chex and Pretzels"

 I don't know what to say. My kid loves Shop Rite.

SO off we went!




Saturday, February 21, 2015

"Hi Everything!"


Yesterday Mason was watching Barney. (ugh OMG I never knew anything about Barney before and wish it could stay that way)

I feel like he is a bit old for Barney but whatever. He really likes it.

He LOVES seeing the kids who are on the show. When they come on, he yells "HI KIDS!!!"

Actually on a side note, he says hi to everyone and everything now. As we were leaving Shoprite a few nights ago  (yes Shoprite again. I feel like lots of shit always goes down in my blog at Shoprite) he yelled at the top of his lungs "BYE SHOPRITE! SEE YA NEXT TIME!!!"

Anyway getting back to Barney. As we were watching, a song about exercise came on and Mason started copying what the kids were doing on the show.

They ran, he ran around the table. They jumped, he jumped too. They crawled around, he did too. Hands in the air to reach up, he did too.

He was laughing and yelling "Hey kids!" the whole time.

No prompting from me-he was doing it on his own.

 I joined in and at the part where the kids jump, he grabbed my hands and we jumped together.

My mind flashed back to when I had him enrolled at "Little Gym" when he was about 19 months old.

To make a long story short, he was in a class for 18-24 months and I remember all of the kids except Mason could follow the teacher's instructions when she told everyone to run in a circle, try to skip, try to hop, etc...

I remember just watching the kids in his gym class just follow along and laughing and enjoying themselves...

I remember just watching Mason and wondering why he didn't understand like the other kids did. The kids in his class could even answer what their names were.

Yeah there were some kids who didn't want to participate but I could tell they were CHOOSING to not listen, as opposed to Mason who just didn't understand the situation.

This is really happening. This is really fucking happening.

That is what I thought to myself over and over. I actually asked his Early Intervention therapist if I should put him in a younger class but she said no-being in the class with same peers will help him.

Later I found out this is called "Peer Modeling".

Basically...kids learn by watching each other and it is very effective way for children with developmental delays to learn.

Peer Modeling is why it is very important for someone like Mason to be in an inclusion classroom setting. This means that he and other students with autism participate in a classroom setting with typically developing peers as opposed to being shunned away to a special ed only class which is what used to be done back in the day.

Mason has been in an inclusion setting for almost 2 years now at his school. I know that the peer modeling has made such a big difference in his development-particularly this year when his individualized program is really putting an emphasis on peer to peer interaction.

I have seen a huge difference in him probably within the last 6 months socially.

He says hi to EVERYONE. He actually said hi to a person on a bike the other day.

"It's a bike! Hi Person!"

 He has now taken an interest in what other kids are doing and what they are playing. Yeah he is not pretending to be Batman yet like kids his age (and who knows if he will even ever like Batman) but the most important thing is that I am seeing growth. His development, while slow, has never stagnated.

So to other people, watching an almost 4 year old boy run around and yell "hi kids" and participate to a show on television doesn't really seem like that big of a deal.

For Mason and I...it was something we had never done together. He giggled and laughed as I crawled around with him.

"Mommy's turn Mommy's turn!" he yelled.

So much of Mason's life has been me watching watching him simply react to things around him, and me prompting him to help him along.

To watch him at almost 4 years old, finally start to interact on his own is something I was not sure was going to happen a year ago.

I don't want to "change" Mason. I am not trying to "erase" who he is.

I know he will always be autistic and I have finally realized that trying to "erase" autism is not going to help him.

The best way to help him is to work with him and not against him...to work with his strengths but still let him be himself.

Autism, I have realized, does not a death sentence.

As Mason has grown, so have I. I realize I need to fit myself into Mason's world as opposed to making him fit into mine.

And I need to make it crystal clear to everyone who interacts with him that is what is expected.

I think this mindset is helping me mentally and it is helping Mason developmentally.

I love all of his little quirks that..if they were gone...he would not be Mason.

I love this kid so much.

I am so proud that I am his mom.







Tuesday, February 17, 2015

Feeling Positive

I am feeling positive.

I think the last time I felt positive about the future, Mason was 9 months old....however I am not 100% sure because I cannot accurately pinpoint when my worry started.

But...I know it was before he turned 12 months old.

I never want to experience that again-the feeling in the back of my head that something is not right.

The feeling that I was I was standing on the beach-watching a huge black wave emerge from the distance, ..preparing to swallow me and there was nowhere for me to run except right into the wave.

This is how I felt pre diagnosis.

The wave did what it had to do,  and I stood on an island, alone.

This is how I felt post diagnosis.

But now...now I am feeling different.

I don't know why all of my imagery from my mind is about water.

But now I feel like I am on a little sail boat and I am sailing toward the sun.

And lately, I don't feel so alone.






Sunday, February 15, 2015

Updates

I feel like things are starting to come together for Mason.

His language is really really picking up-last night he looked at some flowers I had on a table and said

"Oooo they are beautiful. They are cool"

He picked one out of the vase.

"Here you go, Mommy".

It was so cute and sweet-he was super excited to hand me a flower!

He is really interacting with what he sees on T.V.

Recently, he has been really into Barney.

When the kids come on, he yells "Hi Kids!!"

He dances along, tries to copy their sweet dance moves, and sings along.

Barney is super annoying, but I really think the show is helping Mason developmentally.

He laughs at the funny parts too which cracks me up.

He is doing a good job with dressing and undressing. He still needs help, but instead of screaming in frustration, he asks for help.

He actually asks for help for almost everything that he has trouble with-THANK GOD.

I don' t think I could have taken much more of the freak outs...although this morning he was trying to close a plastic egg and and I helped him without him asking and he got super pissed and yelled "NOOO HELLLLP!!!"

Alrighty then.

When I vacuum or sweep, he wants to "be a helper" as he says.)

He helps me push the vacuum and he tries to sweep with the broom-or as he calls it- the "sweepy". ..I am not allowed to call it a broom.

These skills typically emerge around 18 months.

A few times in the last year he has copied what I was doing around the house, but it was really only when I prompted him,

While at the time I thought he was developing this skill, looking back, I think he was just copying me because of all the prompting. He didn't really "want" to help. He was just mimicking-which is great too but not the same thing.

Now, he wants to be a "helper" without any prompting!

He is really advancing pretend in pretend play.

Last week, he used both his hands to put my hair in pony tails and said I was a dog. It was hysterical. I think I laughed for an hour.

This morning when he was putting on my robe, he said "Mommy put on Anna's dress"

He was pretending my robe was Anna from Frozen's dress LOL!!!

Also this morning he tried to put a diaper on Big Bird and then he tucked in-this was all without prompting from me.

I am not sure when this type of pretending typically emerges, but I do remember at Mason's autism evaluation, the Dr who evaluated him wanted to see if he could pretend to give a baby in a bath and I was astounded that it should be a skill he should be able to do-he was 21 months old.

One thing he does that kind of makes me sad is when he makes two toys interact, he makes one Mason and one the ABA therapist.

I was listening him play with two of his Magic Clip dolls and this was the conversation they had:

"Ok Mason. Say muddy. Muddy. Good job, nice talking."

He was reenacting one of his speech drills in ABA.

Another time, I watched him play with Big Bird. Mason crossed his legs and said

"OK Big Bird. Cross those legs"

He crossed Big Bird's legs

"Nice job Big Bird"

I am not sure why this made me sad.

Don't get me wrong, I was happy he was playing but...out of all the scenarios he could play I felt a little guilty that therapy was what he thought of.

Someone pointed out it was the same as playing "school" which I guess is true but...I don't know. It just didn't sit right with me.

Yesterday we were playing and I made one of his toys go to Shoprite-Mason's favorite place to go along with Target-he asks once a day to go to both.

He kind of looked at me as if to say "Wow I can do that?" and then copied me.

This is how he made his toys talk:

"Hi"

"Want to go to Shoprite?"

"Lets go!"

Um...that was about it.

He looked amused and unsure when he was doing it, but he also had a big smile on his face-it was something new!

Also this morning he asked for a spoon and a bowl to eat his cereal!

Overall though I am really happy with his progression. He is so funny, he likes to joke around, he loves to sing along with whatever is on, and he loves to dance and make his toys dance. His personality has really come through this last year.

Now if only he would sit on the dang potty!






Thursday, February 12, 2015

Mother of the Year

Yeah so you can all just call me mother of the year. I basically ripped my kid's heart out and stomped all over it this morning.

Mason woke up and immediately grabbed the tablet to watch "Disney Collector Surprise Eggs" as soon as he woke up-well-not as soon as he woke up. We snuggled and I scratched his back and we played our games we made up where I tickle him and he cracks up.

But as soon as I got out of bed, he went for the tablet.

Side note-if you don't know what Disney Collector is-ummm you are lucky??? It is some chick who makes MILLIONS on facebook opening toys.

Young kids  everywhere are hooked!

http://www.today.com/parents/disneycollector-toy-reviewer-enchants-toddlers-youtube-1D80001314

Disney Collector

I know that is horrible but I am in survival mode when it is time to go to school so there are no meltdowns. Hey-I will take anything to distract him.

As he is watching Disney Collector and i am making his lunch he says

"Want Surprise Eggs"

"Ok Mason. We can go to Target and get Surprise Eggs if you want."
"
OK Mason. We can go to Target and get Surprise Eggs if you want.

OMG. Dumb Dumb Dumb.

So dumb of me to say.

Children with autism are very literal. So when I said we could go to Target, he like seriously thought we were going to Target. I had no idea.

He happily hate his cereal, drank his milk, got dressed. No fights.

Holy Crap! What a great day!

He picked out two toys to bring in the car like he does every morning- "Skipper" and "Sparky"- characters from the movie Planes which is his favorite along with Finding Nemo.

No drama getting in the car seat (his new thing is that he wants to drive and I spend literally 15 minutes trying to get him out of the front seat.)

Mason is happily buckled in his car seat holding Skipper and Sparky...when it happens.

"Ok Mason! Let's go to school!!"

Same thing I say every morning.

I begin to pull away.

I hear thrashing.

Skipper whizzes by my head.

No idea what happened to Sparky.

I look in the rear view mirror...totally bewildered.

"NOOOO SCHOOOOL NOOOOO SCHOOOOL!!!!"

My child literally looked at me like I crushed his dreams.

He. Was. Pissed.

"WANT TO GO TO TAAAARRRRGGGEEEETTTT!!!! WAAAANNNNT SUUUURPPPRIIIISEEE EGGGGGGGSSSS"

Ummmm

Fuck? Whoops? What the fuck just happened?

He thought we were going to Target because of what I said.

OK Mason. We can go to Target and get Surprise Eggs if you want.

I shit you not, this kid was looking at me like I was the biggest asshole alive.

I am pretty sure he was thinking I tricked him.

The thrashing. The screaming.

I had brushed his hair and wiped his nose right before we left (OMG these winter colds, one end and one begins!!)  but  when I looked at him in the mirror, he looked like a kid who's mom had never heard of a tissue.

As a side note, before I had kids I always wondered why moms didn't wipe their kids noses. Little did I know the kid's nose was probably wiped 3,458,947,809 and the mom was just fucking sick of snot.

Sorry I judged, moms.

Anyway-

Mason was really mad at me. I felt so horrible. I wanted to drive to Target but I knew I had to be back at home for work by 9.

He was crushed and there was nothing I could do about it.

I tried to sing songs and make him happy but he was not having it.

I ended up resorting to giving him my phone to watch Surprise Eggs on You Tube which I really hate doing-but I couldn't comfort him driving so the phone was the only thing I could think of to calm him down.

By the time we got to school, all was ok. I dropped him off without any type of incident, but all day I felt so so so guilty.

When I picked him up later in the evening, I had planned to surprise him by going to Target, but he beat me to the punch.

"Want go to Target. Want a toy. Want surprise eggs"

Ok Mason. You will get surprise eggs.

I walked all through Target and couldn't find plastic eggs? Isn't it 90000 days until easter? Seems like the usual time frame for when stores start selling for a holiday right?

No eggs. Target does not have plastic eggs.  They sell Trojan Hot Spot Vibrating Rings, toddler clothes, and vegetables and power tools. All in the same store!!!  But I cannot find a fucking plastic egg?

We walked around Target. We walked through the toy section.

"Mason look there is Paw Patrol"

"No Paw Patrol. Want Eggs"

"Mason look Dusty"

"Cool"

"Do you want a new Dusty?"

"Want Surprise Eggs'

My heart sunk.

There were no eggs in the store anywhere.

I walked to the section where there were Frozen toys.

"Mason look. Ana, Elsa, and Olf. Do you want Frozen"

"No Fanks"

All of a sudden, his face lights up.

"Woahhhhh cool!!!! Want dem"

I look at what he is pointing to

It is Disney Magic Clip Princesses. Belle, Arielle, Tiana, Cinderella, Sleeping Beauty, and Rapunzel all together in one box.

A Disney Collector Favorite!!

Mason already had  Ana and Elsa magic clip dolls at home-another toy he had picked out himself.

I guess he wanted to add to the collection.

"Want dem. Want 6 dresses. Mommy can I have 6 dresses please?"

"Yes you can Mason"

I handed him the box.

You would have thought I handed this kid a million bucks.

"Fanks Mommy"

As I walked through target one more time trying to see if I missed plastic eggs anywhere, Mason showed his excitement for his new toys. He couldn't wait to open them, but did a great job waiting in line and he handed the cashier the box and said "Fank You!!"

"BYYYYEEEE TARGETTTT!! SEEE YA NEXT TIME"

He shouted it so loud-grinning ear to ear, holding his Disney Magic Clip Princess box.

It felt so normal.

I took my kid to get a toy.

And he was really happy.









Friday, January 30, 2015

I Love You Mason

So this time last year when Mason was about to turn 3...well...I wouldn't say he was non verbal but he wasn't verbal the way a 3 year old should be.

Most of his language was labeling and unless you were with him every day, no one really knew what he was saying because he started most of his words with a "d" sound. He did not speak in sentences-mostly everything was one or two words only. He could count to 20, say the alphabet, spell his name.

Here he is exactly a year ago counting to 10.


Here is another video of him looking at pictures

Both of these were taken about a year ago.

A year later, I am so happy with his progress. Remember-this kid has been in some sort of speech therapy since he was 16 months old so this stuff is not happening naturally.

He works very very very hard.

At his preschool, he gets speech, OT and ABA. In ABA they do a lot of speech and OT drills as well.

He can sit with the ABA instructor for two and a half hours and pay attention and follow the directions-I swear he is so good at sitting and listening because he started Early Intervention at 16 months old and would sit with the therapist for almost an hour while they worked on language and social development.

Anyway-you get the picture.

 I sometimes get the comment "see he is fine" which really annoys be because...it wasn't fine. Needing hours and hours of speech therapy isn't "fine".

Anyway-the last 6 months he has had a real language explosion. His speaking is so much clearer than it was before. He is speaking in sentences.

He does not have any conversational language yet although strangely, he will have conversations with himself.

For example-right now he just said

"Mason. No bouncing ball in the house. Ok. You are so smart you catch the ball. Can I have the ball? That's nice asking"

Seriously he just had that conversation with...himself.

He is doing all of these funny things now that crack me up.

Yesterday he was talking in a really weird voice and told me he was a monster.

Whenever I am in the bathroom, he waits for me to come out and when I do he claps and says "Great job on potty mommy!"

Thanks Mason. It is nice to feel appreciated.

We play games such as pretending to jump in water and see sharks-and he really gets it and understands. He actually made up the shark part of the game-we were pretending to swim in water and he said "ahhh shark!"

Anyway this morning he woke up crying around 5 am.

"Mason what is wrong?"

"I need help. Shirt is stuck. Fix it"

I turned on the light and his shirt was like all twisted in the arms-no idea what this child did.

He was really crying and just saying "It is stuck. Fix".

"Ok Mason. Mommy will fix your shirt"

I fixed his shirt and he snuggled close to me.

"Fanks Mommy, " he said.

"You are welcome Mason" I said.

I sat in the dark and thought about our conversation.

Then it kind of hit me-we DID have a little conversation together.

It wasn't the type of conversation my sisters have with their 4 year olds-but...it was a start.

He wasn't labeling or asking for food. He needed help and could tell me exactly what was wrong.

"Fanks Mommy" repeated over and over in my head. The way Mason said it, you would have thought I was seriously the greatest person who ever lived.

 He really sounded so grateful that I fixed his shirt. We drifted back to sleep...

About 45 minutes later he was out of bed, lifting my eyelid up and holding my glasses for me to put on.

"Mommy get up on floor" ("Get up on floor" means he wants me to get out of bed)

Mommy can I have milk please?"

"Mommy can I watch doggie dancing?"

"Mommy no shoes and socks. Put them on the sofa"

"Turn fan on. Make it fast"

"Turn lights on"

"Change my diaper"

"Want to do letters puzzle"

"Want some chex and pretzels. Mommy can I have chex and pretzels please?"

"Can I watch Dusty Crophopper please?"

All this and I didn't even have my robe all the way on.

I got up, changed his diaper, got him some milk, gave him the iPad to watch doggie dancing, put his shoes and socks in his room, turned the fan on fast, brought out his puzzle, filled his cereal bowl with chex, and put on the movie Planes Fire and Rescue-his new favorite movie.

Hey...the kid knows what he wants.

"Fanks Mommy" he said again.

I hugged and kissed him.

"I love you Mason".

"I love you Mason" he said back to me.

I smiled and laughed to myself.

We will get there.

I am sure.