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Friday, January 9, 2015

I Wish I Could Have a Dang Crystal Ball...

So there are a lot of blogs out there written by autistic adults that describe how they felt as a child growing up. I have been reading a lot of them to try to gain the perspective of autistic people.

Many of them sound like they are very hostile towards their parents. They feel that therapy was abusive (particularly ABA therapy which is what Mason gets) and hearing that REALLY bothers me.

I am present for Mason's ABA therapy for 6 hours  during the a week. He laughs, he hugs the therapists, he is excited when they come to my home.

He looks to me no different than a kid in school memorizing spelling words or the 50 states.

I mean...that stuff is boring. it is normal for kids to be bored right?

He is doing probably a lot more "learning" that a typical child his age because he is basically learning behaviors that typical kids do not have to be taught. How to speak, how to play with toys, how to age appropriate self care.

Learning those things, IMO are what he needs to ensure a successful future.

It is all so confusing. If I felt Mason was not happy, I would pull  him out right away.

 He seems happy to me...I can tell when he is unhappy.

I just wish he could tell me himself.

I wish I could say "are you happy at school" and he could answer that question.

One of the other things I have read is that autistic people always knew what was going on around them even if they seemed like they were "in their own world."

Many of them write about how they understood what was going on but their body could not react.

I thought about when Mason was 1 and I would ask him over and over to point to his cup but he wouldn't.

But now I wonder ...maybe he couldn't??

I am thankful for getting early intervention for him.

I want to set him up for success.

Babies turn into toddlers, toddlers into preschoolers, and preschoolers into elementary kids etc...

I know in my heart if I had ignored the signs or just waited for them to hopefully go away, I would be setting him up for failure later on.

I don't have any regrets in that respect but about once a day it crosses my mind...

Am I doing this right?

How do I know?

Is he going to hate me because one day I kept asking him to point to his cup? Is that what these adults remember as abusive?

Is he going to think this blog is insulting?

Sigh.

I have learned so much the last 2 years-especially this past year.

I just don't ever want him to think I was trying to change him into someone else and that I did what I did because I love him.

He did not have a voice.

I am his mother and I had to make the decisions as best I could.

I know many autistic adults believe they are more of a voice than parents of autistic kids.

I do appreciate their perspectives and I am trying to learn from it....and I have. I have learned a lot and hope to continue to learn even more.

Plus I don't have any autistic friends I can just call up and ask what they think.

And even if I did...who's to say they were experiencing the same thing Mason is?

My perception of autism has somewhat changed because of the viewpoints of autistic adults and believe me-it is totally for the better.

I can see things from a perspective that I never thought of before.

But I honestly feel at this time, no one knows his voice better than me... because no one else loves him the way I do.

And I will know that I have done my job as a mom if as an adult,  he can look back and tell me he was happy.



Thursday, January 1, 2015

Goodbye 2014

So the holidays are over. THANK GOD.

I don't ever bring up what I am about to bring up  because to me, it is  very personal and very sad and I am not all Beyonce singing "Independent Woman" at the top of my lungs but I divorced this year. I don't want to talk about it at all other than to say the holidays were just very very hard for me and I am glad they are over and looking forward to moving on with life in 2015.

Anyways...Mason did GREAT this year! He was excited, he showed interest in Santa and even though he still doesn't "get" the whole concept of Christmas, it was an improvement from last year where he just had no clue what was going on and had a meltdown of epic proportions Christmas morning.

He opened gifts, he was excited for toys, he played with his toys which I was so happy about. He seems to have a lot of interests other than airplanes and banners.

He is talking so much now too!! Still no conversation type of speech at all,  but he will now say things like "Mommy can I have cheerios please?" or "Want to snuggle on sofa".

Mostly, he can verbally describe his needs and wants and his speech is getting a lot clearer so other people are starting to understand him.

This time last year he was still using a lot of signs, babbling, and only had a few consistent words.

One example of how far his speech has come is yesterday at the Discovery Museum, he was playing basketball and using a purple basketball.

A mom who's kid was also shooting hoops walked over to him with a different basketball and said "Do you want this ball? It has more air in it."

I watched to see what he would do. I actually had no idea if he understood what she was talking about, but he shocked me and said "No I want this one" and pointed to the purple ball in his hands.

She smiled, said "Ok" and walked away, probably having no idea what just actually occurred. I actually wanted to run over and tell her, but I would have probably sounded like a loony toon.

I think I just stood there...looking at him and wanting to just cry with happiness because he actually took the time to respond back.

I am sure I looked like a big dope but whatever.

Cognitively, he is really making great strides too. I feel like I am finally in a new stage with him as far as development. He still behaves very toddlerish- which is getting harder to manage as he gets bigger. But the good thing is that he keeps making progress.

Socially, he seems to be progressing too. He still doesn't understand friends or having friends but he is really engaging with his cousins more.

Today he wanted to play with my nephew Leo and so he grabbed his hand, took him where they wanted to play and said "Leo get down on floor" (He wanted Leo to lay on the floor and jump up and scare him.)

The interaction really made me happy. I have really never seen him do that before.

I know at his school they are really working on peer interaction and it looks like it is paying off.

Overall I am very happy with the progress Mason has made in 1 year. With that said,  I try very hard not to sugar coat Mason's delays... and he is still very delayed-I know this. I can easily see it.

We are planning to schedule a follow up appointment with the neuropsychologist who evaluated and diagnosed him to get a better picture of where he actually is on the Autism Spectrum because honestly, I have no idea.

I really thought by 4 years old,  I would have a clear picture but...I don't. Like I seriously have no clue. He was diagnosed with "mild" autism but reading through other blogs and message boards there are kids his age with autism that seem more advanced. So what are they if he is mild?

It is all so confusing but hopefully I will be able to get a better idea.

So goodbye 2014! I am ready to take on 2015! I feel like the last 2 years I have just been wandering around lost in every aspect of my life and I am ready to take charge, focus on me a little, and as always, continue to cheer on my little guy!

Happy New Year!





Tuesday, December 2, 2014

December

December is a hard month for me.

You would think that with the approaching holidays as well as Tony Romo always being a big flop, December would be a month to look forward to.

Don't get me wrong-the holidays put me in great spirits. Especially this year-Mason still doesn't understand Christmas, but he is getting excited to see Santa, and Christmas Trees...which is really great.

He is paying a little bit of attention to our Elf on the Shelf-who by the way has already died like 50 times because Mason doesn't understand not to touch him.

We apparently have a very resilient elf.

So yay holidays, yay elf, yay gingerbread lattes and all that crap.

December is also Mason's diagnosis month.

December 21 to be exact.

It was almost two years ago that I started keeping a blog. The day Mason was diagnosed on the Autism Spectrum.

I don't know why it is hard for me-I mean it is not like taking him to the evaluation MADE  him autistic.

He was already autistic.

The diagnosis didn't actually change anything about Mason.

He was the same kid when we walked in-an autistic little boy.

And he was the same when we left-an autistic little boy.

I just had the confirmation.

I remember walking into the building of the facility where the evaluation took place.

It was so quiet and still.

I remember realizing I was holding my breath and letting out a long sigh as we walked to meet the Dr. who would be doing the evaluation.

I remember her telling us she took a special interest in Mason as he was only 21 months old-on the young side for getting an autism evaluation.

I remember Mason waving hello to her and wondering if she was going to think I was a nut job for bringing him.

Actually, I was praying for that to happen.

See? We told you. He is fine-just a little delayed!

I could hear family members saying it to me in my head.

I watched her interact with Mason-wondering what each scenario meant for him. Wondering what she was looking for...

I remember being asked 100000000000 questions and having to dig deep to answer them honestly and not try to twist what I said to make the answer the "right" one... and not the "wrong" one....which was really the right one!

I remember waiting for the results....

I remember the words like slow motion

Pervasive... Developmental... Disorder... Not Otherwise Specified

WTF is that???

Mason is on the Autism Spectrum

More services are needed. 20-30 hours a week.

UM.....HU????????

EXCUSE ME?

My brain could not even process that-I think I had a harder time hearing "20-30 hours of therapy" more than I did "autism".

I don't remember much after that.

The  Dr. was telling us about ABA therapy but I was just staring at her.

I remember being in the car looking at trees and just staring at the sky.

I remember being scared, confused and so so so overwhelmed and lost.

I honestly think I was hoping I would find the answer in the trees. I just stared and stared.

This wasn't how this day was supposed to go.

The Dr was supposed to tell me Mason had some delays but would get caught up with Early Intervention-and "way to go" for starting early Mom and Dad!

No.

That conversation never happened.

Instead, I was told my 21 month old was developmentally a 9 month old.

Believe me-I am going to try very hard to not feel down,

The thing I keep saying to myself is that Mason did not become autistic in December.

He was no different in December than he was in November.

Unlike Tony Romo.

muhahahahahahhahah.

Go Eagles.











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.