Tuesday, April 22, 2014

Lessons

For the most part, I try to remain very positive regarding Mason's autism. I tell myself every day that no matter how sad it makes me, I have to remember that Mason is the one who struggles, not me. My job as a parent is to do what is best for him.

Sometimes though, I get in a slump and I feel for sorry for myself.

This happened on Easter and after some self reflecting, I feel like an asshole.

Basically, it is getting very hard for me to watch Mason's peers in action.

When Mason was 2, he still blended in with peers. Although most of his peers were speaking, his language delay did not really stand out. The fact that he was not potty trained did not stand out either. While pretty much all of my friends with 2 year olds were beginning potty training, I wasn't. But...2 year olds still wear diapers. 2 year olds tantrum if they don't get what they want.

You get the point.

At age 3...these things start to stand out. Pretty much every 3 year old talks and if they are not talking, they have a language delay. 3 year olds wear underpants-sure they probably have accidents. 3 year olds interact with each other. They make up games, they imaginary play. They understand if they are at a birthday party. They understand dress up. They understand social situations.

Mason-while he is developing language-really does not of that.

And it is heartbreaking for me to witness.

Mason probably has about 30 words-all of them are words to communicate needs. He is just now starting to put two words together to say things like "blue truck" to describe things he sees, which most kids start doing around one and a half.

So yes...it is exciting. But when I see kids his age having actual CONVERSATIONS about whether or not they want to watch Mary Poppins or Frozen...it kind of takes the wind out of my sail.

So does watching them interact.

Around 18 months old is when kids start to develop "pretend play". It is a very important milestone. They may pretend  a T.V. remote is a phone, pretend to wipe a spill while their mom or dad is cleaning, pretend to cook with pots and pans. Pretending pretty much starts out as mimicking parents and develops from there.

When I was on high alert because of his developmental delay, I waited for this skill to develop.

I watched my niece and nephew and even my best friends son who is 5 months younger than Mason all develop imaginary play skills.

Mason never developed this skill.

At 2 I really started seeing a huge difference in his social awareness compared to his peers.

Thankfully, Mason now is starting to develop imaginary play.

The other day I was on the phone and he sat next to me with the television remote, and pretended it was a phone and said "hello".

He pretends to clean when I clean.

It is something that is worked on during his 20 hours of therapy a week.

So...I am thankful.

But then I get in a room with 3 year olds and listen to them have a discussion about imaginary ice cream cones. I watch them make up games. I look at my son who has no clue what they are doing, and wants no part of it.

He is not shy. It is not that he "just doesn't want to play"

When he is in a room full of kids (or people in general) where there is a lot going on, he retreats to a place where they are not, and it seems like they are invisible to him.

When he was younger he used to get worked up and have melt downs and I would have to remove him from the situation.

Now that he is older, he removes himself.

He did this on Easter.

There were too many people in the room, too many people he did not recognize. It was all too much for him.

So he wanted to go upstairs.

And I was annoyed.

Honestly, I just wanted to sit with the other parents, not worry about my kid, and just relax.

There is no relaxing with Mason. I still have to chase him around like he is an 18 month old toddler.

He cannot just "go up and play".

It is frustrating.

So...I was frustrated. I sat upstairs with him and sulked. He wanted to spin some lids, so I let him and I played on my phone for a few minutes.

I tried to take him downstairs and he screamed.

We were probably upstairs close to an hour.

Everyone else was downstairs enjoying Easter, and I was alone watching my kid happily spin a lid while I heard kids his age and younger play together,  and have conversations and I heard their parents enjoying themselves.

We eventually went downstairs for dinner where there was a "kid table."

I had to remind my sister that Mason could not have a glass plate.

It actually didn't matter-I knew he would not sit and eat anyway...which he didn't.

I wasn't going to fight him. I honestly wanted to just eat my dinner, so I let him play on the sofa with my phone while I ate.

While the other kids ate Easter dinner, he wanted Cheerios which was fine with me.

During dinner, he again began to get overwhelmed and I had to leave the table. I sat with him on the sofa and just cuddled him.

My sister wanted us to hang out, but the thought of chasing him around for the rest of the evening just made me even more tired and I decided to call it a night.

For the past few days I have reflected on the experience.

My behavior- feeling sorry for myself, moaning and groaning that I couldn't be like the other parents- was...just ridiculous.

I made the whole day about "me".

This is not about me. This is about Mason.

While upstairs alone with him in the playroom, I never really thought about the fact that he was removing himself from an overstimulating situation. Yeah it sucked for me-but it probably sucked 10000 times worse for him,

I don't know what it is like to be overstimulated the way he is. I don't understand what it does to him. I don't know what it is like to be in a room with too many people, too many things going on, to be in an environment that is so overwhelming it changes who you are.

I continued to think about how he chose to remove himself from the situation vs having a meltdown like he used to do when he was younger. I felt like such a horrible person for not seeing at the time what was happening.

During that moment, I should have been proud of him but I was too busy feeling sorry for myself.

So...I am just taking it as a lesson learned.

We can always use a good lesson, right?

I hope someday, Mason knows how much he has taught me.

I honestly couldn't be more proud that he is my son.







Saturday, March 22, 2014

A Story About Juice

So today was an interesting morning for me.

Mason's little language explosion recently has really made such a huge difference for him and for me.

For almost two and a half years he was literally..silent with limited communication ability.

He could request basic needs-point to his cup if he was thirsty, stand by his high chair or go to the cabinet where the snacks are if he was hungry.

Right around his second birthday after we started ABA therapy, he was able to do some signs.

"More", "All done", "Eat", "Help" and a few others.

That made communication between us a little easier.

I remember the first time he signed "more" and than pointed to the television. He was probably two and a half. It was the first request he had made to me that did not really have to do with food.

When he started pointing to show enjoyment, that is when I really started to notice his babbling and language take off.

I probably will never forget the day he really "saw" an airplane in the sky for the first time when he was two and a half.

I had pointed out airplanes before. I had shown him flowers, bugs, the sky, the moon...anything.

There was never any reaction from him. It was like they were not there.

It was summer 2013 and Mason and I were walking outside when the airplane flew by. Mason's face lit up. He jumped up and down, he screamed. The air plane flew away.

He signed "more".

I prayed.

"Dear Jesus, I know I don't go to church. But for the love of God, let a plane fly by. Please"

I wanted to see his reaction again.

He kept furiously signing more.

Do you know not one stupid airplane did not fly near us?

I took Mason inside and we watched airplanes on Youtube.

This whole day was such a turning point for him.

That was 8 months ago.

From that time, I feel like I truly have watching a baby develop communication skills as they emerge into a toddler.

The sign for "more" turned into the word "more". When Mason was thirsty, he would say "cup". He began to be able to verbally identify family members, and characters from his favorite movies and shows.

I started to be able to figure out what his interests were- planes, transportation, letters (well, that I had known since he could identify all his letters at 18 months old), numbers, Finding Nemo, fish.

He is now three. He is still very hard to understand and only speaks one word sentences. He probably has six words that he can use independently to make requests. He can name all characters from Finding Nemo and Planes. He can count to 10, recite the alphabet, spell his name and can identify any object around him. He says mama (finally!) and dada.

 I would like to point out that I am very aware all children develop differently. But not all children have a neurological brain disorder that affects the ability to communicate. So...it is still difficult for me to relax and enjoy his development, but I am trying my best.

Anywhoo- this morning, I gave Mason his cup of milk like I do every morning.

He took a sip and handed it back to me.

"Juice"

Ummmmm.

Hmmmmmm.

Mason had never specifically requested a drink.

There was no juice in site.

I dumped out the milk and filled his cup with water, hoping maybe he just could not say water and was saying juice.

He took a sip.

He looked at me like I was a huge asshole.

"JUICE"

He threw is cup at me.

Crap. He really doesn't drink juice so I never have any.

Pedialyte.

My only hope.

He took another sip. Threw the cup again.

He laid on the floor and whimpered.

"Juice. Juice. Juuuuiiiiiiiccccceeeee"

This was 6:30 am.

I looked around, hoping the juice fairy would magically appear with apple juice.

Oh wait. That is me.

"Mommy will get you juice Mason."

I threw on his shoes and socks while he laid in a fetal position on the floor crying for juice.

At the same time, I noticed I was out of coffee.

I almost joined Mason in the fetal position on the floor.

Instead, I grabbed my keys, grabbed my kid and out the door we went to Dunkin Donuts.

1 coffee for me, and 2 apple juices for Mason.

Mason saw the apple juice and pointed to it.

"Juice"

I pulled to the side of the road, and filled his cup with apple juice.

He took a sip and smiled a huge smile at me.

"Ta da!" he sang as he took another sip.

He seemed so happy and grateful-my heart literally wanted to explode.

I wondered how many times I had experienced a melt down with him, and it was because he specifically wanted something but could not tell me.

How many times had he melted down over his cup (there were many) and it was all because I just had no idea he wanted juice?

I pushed the thoughts out of my head and decided to enjoy my moment of being #1 Mom.

"I told you Mommy would get you juice Mason. I love you"

"Da da do"

He smiled at me again, and drank his juice.

This was such a new experience for me.

I was able to help Mason in a way I never had before.

It felt really good.

When we got home, he gave me a big hug and I knew he was saying thank you.

While I have many days where I feel hopeless, today the light at the end of my yellow brick road was shining just a little brighter.










Tuesday, March 11, 2014

10 Lessons I Have Learned From Autism

In no particular order...

1.  I will not hide from situations because of fear-especially when it comes to my child

 "I don' t know how you do it".

 I hear this phrase so often.

The truth is, I just figured it out. I did not have a choice.

 If I chose not to do anything, the only person that suffers is Mason.

I will never back down in any situation when it comes to him because of fear, and I will fight for him always.



2. I will always follow my instinct

If there is ever a situation where I feel something does not seem right, I will follow that feeling.

 Everyone around me told me that Mason was fine. Mason was a boy. Mason would catch up.

 But something continued to whisper in my ear.

 My instinct told me that everything was not ok, and against what many people told me...I chose to follow my instinct.

 And I was right.

I will never doubt my instinct as a mother after this.


3. It is ok to cry

I cry once a day at least. I cry for how much Mason struggles and how much I wish development would come easy for him.

I cry that he needs 20 hours of therapy a week to be able to develop in a way that comes naturally for children without autism.

But crying does not mean I wish he was someone else. I can cry for who I thought he was meant to be, but I will always love him for who he is.

And it doesn't mean a damn thing other than I feel like fucking crying!!


4. I will always lean on others for support in any situation

I will not worry about feeling "proud".

I will not feel like "others do not want to be bothered".

I have found that people who truly care about me support me no matter what.

The outpouring of support for Mason has been nothing short of astounding to me.


5. I will always enjoy the small stuff

I will no longer take anything for granted.

Seeing a beautiful flower.

Stepping outside on a warm sunny day and that feeling I get when the sun hits my face.

Watching my child point to an airplane for the very first time, and looking at me to make sure I see what he is seeing.

It's the little things


6. I will not wait for problems to fix themselves

I cannot tell you how much I wanted to bury my head in the sand and lay in my mom's lap when I first began to realize Mason probably had autism, but I also realized that I was the only person who had the power to change his outcome.

I will apply this to any situation going forward-I will not wait for someone else to "fix" my situations. I am the only one who can.


7. I will try my best to focus on the positive, not the negative

I admit, this is something I need to work on but I try every day to apply this thought process. To be honest, it is difficult...especially seeing other children Mason's age.

But in the grand scheme of things, I have so much to be thankful for.

We have a long road ahead of us with Mason's disability...but every day he continues to make progress.

And that is most important.


8. It is ok to think  the phrase "God only gives people what they can handle" is a total crock of shit

Yeah, I said it. And I mean it.


9. My "normal" is different. But that makes it normal for me.

My normal... is normal. So everyone else who does not have to worry about Early Intervention, ABA therapy, childhood development, etc...is abnormal!


10.  I have learned that while having a child with autism is very scary,  Mason would not be Mason without his autism. I do not feel that it is a "label" and I will embrace this part of him just like every other part of him-from his curly brown hair to his really fat big toe

I have learned to accept that Mason has autism.

When this all first started, I wanted it to "go away."

It has taken me about a year to accept that it is not going anywhere. Autism is here to stay. And that is ok.

Accepting does not mean I will give up. I will just accept it as a part of Mason and continue to do what I can to ensure he has the tools he needs to be successful in life, just like any other parent would do for their child.

At the end of the day, yes, my son has autism.

And he is pretty fucking cool.












Monday, March 3, 2014

Setting Goals

So, I guess I have to admit that I have not been exactly super proactive when it comes to Mason and making "self care" skills a priority.

When we had his 1 year eval for Early Intervention back in August when he was two and a half, I cannot remember what his score was for the "self care" category, but I do not remember being overly concerned about it as communication was still my #1 focus. At that point, Mason still was only still communicating basic necessities (food, drink, etc...)  and not trying to communicate anything else. He had just started babbling a tiny bit but still had only about 3 independent words.  He still was not reacting to his environment although I do remember shortly after that evaluation, he did start pointing to things that interested him, like air planes, the moon, traffic lights. and he really started babbling,  using jargon, and pairing gestures with vocalizations.

Anyway my point is-I was still not concerned that he did not use a fork or spoon, that he never took his shoes off, try to use the potty etc...

Fast forward to now and...I am kind of regretting that I put it all on the back burner. I feel that stupid little clock ticking in my head again. It is truly amazing how letting these things fall through the cracks really affects these kids.

So basically in a nutshell-for "adaptive" skills Mason is within a range of 13-24 months developmentally. The range sounds very odd but there are two parts to "adaptive"that kids are evaluated on-self care, and personal responsibility.

For personal responsibility (example would be knowing concepts like "hot"), Mason is developmentally a 24 month old-not too bad. A year behind but the good thing is that he continues to develop and show progress.

In self care....not so much. Basically...he has made no progress.

Imagine my surprise when he scored developmentally a 13 month old.

Now just to back up for a second-these evaluations are not like the autism evaluations where a trained professional has to give their professional opinion on their..uh...opinion.

The assessment that was done on Mason is called the BDI-2 and it is basically pretty straightforward.

Children are asked to perform age appropriate skills, and the person evaluating them determines a raw score by adding up points for each skill. They get 2 points if the skill is mastered, 1 point if it is emerging, and 0 points if they cannot do it. The raw score is then converted to Domain Scores (based on the child's age) and this score will determine if the child is average, below average, or delayed. An age equivalent accompanies this score.

Other age equivalents for Mason in the various domains (Mason's age is 36 months):

Personal-Social 24-28 months
Communication-20 months
Gross Motor-30 months
Fine Motor-28 months
Cognitive-20-23 months

Pretty much where I figured he would be based on his last eval 6 months ago.

The other good thing is that when he was evaluated by the school district a few weeks ago, their scores were pretty consistent with Early Intervention-just within a few points of each other (except for communication-school district scored him  lower). But overall, I feel comfortable with my understanding of where Mason is developmentally.

So anyway my point is....I am going to shift some focus away on communication and start tackling self care head on.

My goal will be in 6 months to report back to all (3?) of you that Mason uses a fork, spoon, somewhat using the potty, can undress and dress and with assistance and all those other things that go with self care.

I will report back in 6 months!

Over and out!








Sunday, March 2, 2014

Could I Borrow Some Tokens?

So...my little guy turned 3 yesterday.

I remember when he was born...I specifically said to my sister.

"I cannot believe one day he will be 3 years old and talking."

Little did I know that at 3, Mason would have no idea it was his birthdayz little did I know he would be practicing opening presents as part of his therapy a week before hand, because the whole idea of presents upset him.

I mean...who the heck thinks their kid at 3 will be in therapy for autism?

Well, I did not.

But...he is.

And...he did GREAT!!!!

For the past two weeks in ABA therapy, his therapist has been coming over with a gift bag for him to practice opening.

After our debacle at Christmas, I just kind of accepted that he would never open presents.

I spoke of the whole ordeal to his doctor at school.

The weird thing is-I just accepted the whole thing.

"Well, this is how he is, and this is how it will be" I thought to myself.

She, however, set me straight.

She told me this is NOT how it had to be, and that presents were supposed to be fun! Birthdays are fun, and Christmas is fun. And we were going to make it fun for Mason.

I honestly felt...crappy kind of. Like...dumb almost. But...I didn't know that opening presents was something we could implement in his program.

I seriously felt really stupid about the whole thing.

Why didn't I just ask?

Anywhoo- present opening was added to his program. And on his birthday-he opened 3 presents. It was the first time he had ever done it.

I am not sure he still knew exactly what was going on, but I was able to say "Mason come see what is in the bag."

He walked over, and pulled out the gifts.

I still don't think he really understands what a present is. But that is ok. The fact that, for the first time ever, he was able to sit down, reach in a gift bag, and pull out a gift...was pretty cool.

***Also as a side note, he can spell his name, Nemo, and Dory.***

Slowly but surely we are coming along.

I think the next 12 months are really going to give me an idea where Mason is on the spectrum. It is so hard to tell at this age.

At 1-no one (except me) could tell anything was different.

At 2, it seemed like (to others)  he "just" had a speech delay.

Now at 3, he is visibly behind his peers and one can tell he is a special needs child.

I think the next 12 months will answer so many of my questions regarding where on the spectrum Mason will fall.

I am very scared, but also feeling very hopeful.

I have been focusing so much on language the last year, that I really need to have some focus shifted to self help skills which he is very behind in.

A friend of mine who I  met on this journey described parenting a child with ASD as "Whack the Mole".

 I thought it was such a good analogy.

You just whack whatever is in front of you and worry about the rest another time.

Here's to a lot of mole whacking this year.

*** mombrag











Wednesday, February 19, 2014

PSA- Secure Your Furniture To Your Wall

Yes...it happened.

I was on a call for work, not paying attention to Mason, when I heard a loud crash followed by the sound of a child in terror.

I ran in Mason's room and saw the most horrifying thing I can imagine-he was laying on the floor-his dresser and drawers on top of his legs.

It's just his legs, it's just his legs.

The dresser is super heavy but I threw it up like it was a piece of paper.

I have no idea what happened. There was nothing on top of it that he would want. He has never tried to climb up it before. All I know is..it was on top of him.

My mind flashed back to a blog I had read a few years back. (Please read...seriously)

I remember wanting to mount Mason's furniture...but we never did it. Too much of a hassle I guess....however the story that I have linked has stayed with me.

I rushed Mason to the ER and they saw him within minutes.

The staff started asking him questions, tried to give him stickers and stuffed animals and he FREAKED OUT.

I told them that he had autism, did not understand their questions, could not speak...and for the love of god please don't give him a sticker or a stuffed animal that he had never seen before!

I don't know if at first the nurses were taken a little bit aback by him. They tried to make his visit fun but he just screamed. He did not want the hospital bracelet on his arm, and screamed  high pitched screams until he was able to remove it. He kicked and flailed around as they tried to take his blood pressure.

It was really super fun.

We went to x-ray room where again I had to try and hold him down. Again he was given stickers, again I had to politely decline stickers and get weird looks at first, but at the end, they turned into smiles.

The staff really did a great job with him-it was very difficult overall.

We went back to the triage area where about a half our later, we found out that he had fractured a bone in his leg.

Right now he is in a splint and tomorrow we go to CHOP Orthopedics to get a cast that he will be in for 4 weeks.

A cast for 4 weeks. Sounds annoying. I have no idea how I am going to bathe this child, and he is already waving bye bye tearfully to his splint because he does not want it anymore.

Annoying as it may be...at least it is not...something worse.

As soon as I arrived home, Scott secured the dresser to the wall. I will do other furniture as well.





My breath is taken away when I think of the worst possible scenario in this case.

Please mount anything that could potentially fall on your child-even if it seems too heavy to ever fall on them.

The worst possible consequence will far outweigh the inconvenience.






Update- With a heavy heart I share this story that I read a few days after Mason's accident. Please take the time to read and understand the seriousness of securing everything to the wall.

Curren's Story






Monday, February 10, 2014

From This Moment!

So Mason's 3rd birthday will be here in a few weeks.

 I CANNOT believe how fast 3 years went. I literally feel like I just gave birth to him!

I seriously had the best labor and delivery EVER.

Epi? YES PLEASE. Good LORD those contractions were...like...really fucked up.  I had no issue with having pain medication.

 I think it is neat-o that people can go without meds, but...I was not one of those people.

BRING ON THE MOTHER EFFIN DRUGS!

Basically, after I had the epidural, I just totally relaxed. I slept. I was on Facebook. I had normal conversations.

I actually posted how dilated I was as my status on Facebook. The comments were priceless! So funny!  And I don't really care if that is lame. All of my friends and family were curious to know what was going on and in the end, what the hell is social media for other than to talk about things only 4 other people care about with all of your 600 fake friends?


So yeah, I posted when I was like 7 cm. I think I stopped after that, because shit got too intense.

So before I begin to make a long story short, I need to mention the totally hot OB/GYN who I secretly prayed my whole pregnancy would NOT be the Dr. on call...was on call... and my mom made it a point to...uh...point out how well he was manipulating my vag prior to pushing. She TOTALLY said that out loud. #embarrassing.

Anywhoo-my labor and delivery was just another day and  I don't have some gut wrenching birth story that makes tears flow and emotions run wild.

I literally was on Facebook, my mom made comments about the hot doc manipulating my lady parts, pushed...and out he came.

I will never forget his little face the first time I saw it.

Seeing my son for the first time come out of my body was like nothing I imagined.

To this day, if I had to pick a moment to relive over and over, it would be that moment.

I kissed his face. I cried. I was scared.

What if I was not a good mom?

What if he was not happy?

What if I totally sucked and he died? (yes...actually had that thought. New mom here)

I remember looking at his little face, wanting him to know how much I loved him, wanting him to know that I would do anything for him, and without even knowing it, in probably less than 30 seconds...I changed.

Everything changed at that moment.

I knew at that moment, I would do whatever I needed to for my Mason, to ensure he could have the best life possible.

Like every parent, I hope I can look back and say with 100% belief that I truly did all I could for him.

Like every parent, I hope I have no regrets.

Like every parent, I just want Mason to have it all, and to be happy and successful.

Sometimes I get annoyed when people say "God only gives people what they can handle"...or things similar to that.

All parents, special needs or not, have the same common goal.

We want our children to know they are loved, we want them to be happy, and we want them to give them the tools to become successful. And some of us will need a lot of guidance, because what we know in the beginning...just isn't good enough. 

The paths we take as parents may go in different directions, the tools we use to teach will be individualized based on the child's needs.

But our goals are the same in the end.

We are all the lifeline to our little one.

So whether we are taking them to autism therapy, or skipping along to gymnastics, we (I?) need to remind myself that parents around me are no different than...um...me. We all do what is best for our children, based on their needs.

I remember the first time I felt his little head on my chest.

My heart was heavy, and I had never felt so scared in my life.

I said the words that I believe parents everywhere whisper in those first moments.

I hope I never let you down Mason. I love you very much.