Sunday, May 20, 2018

Invisible Disabilities

My son's disability is invisible.

He doesn't have beautiful almond-shaped eyes, hearing aids, or a wheelchair.

You will see him stim with his hands or if you are in our home lately a sock, but other than that at first glance his disability is nearly invisible.

Instead of an outward tell-tail, his brain is uniquely wired.


His brain is 

Impressive

Rigid

Scared

Silly

Loud

Sweet

Invisible disabilities are funny. They are deemed cute and passable when they are toddlers. However, when the toddlers become children they are deemed bratty and out of control. They are deemed to be bad parents who can't discipline. They are loud, explosive, and sometimes scary. They are met with stares, gawking, and judgment.


One in sixty-eight children is on the spectrum. 

Where are they?

We go to public libraries, playgrounds, children museums, water parks, amusement parks, and arcades.

Very rarely do I see other children in public who have the same invisible disability as my child. Very rarely do I see flapping hands, rigid thinking or a mom setting a timer on her phone.

Where are they?

Invisible disabilities do not have a pass. There is no get out of jail free card and without this card, some parents choose to hide.

I refuse to hide my child.

He will not become invisible.

We will not become invisible.

Even though you can't see it, it is there. Your gawking and staring used to shake me. I used to feel that I need to explain. I used to jump to tell you a diagnosis that you were not entitled to. I used to be embarrassed, and say things like, "we are working on it".

I am done.

My emotions have changed me. They have ignited a fire deep within my soul.

I don't and I won't explain my son.

My son and his invisible disability have a place in this world.

He belongs as much as anyone else does,

So please stop staring.





xoxo - the chaos manager









Sunday, March 11, 2018

This is a mistake

I shouldn't be doing this.

This is a big mistake.

I shouldn't go here.

This blog isn't about politics.

This isn't worth my time.

Just let it go.

But, the interaction I had earlier last month is still swirling around and around in my head.

I can't just let it go.

I need say something.

Earlier this week I was scrolling on my Facebook news feed and I saw a post from a co-worker of mine. The picture was of Bernie Sanders in an Audi R8 with the caption, Yep that's Bernie Sanders driving a supercar bought with donor contributions #feeltheburnout.

I took one look at the grainy picture and seeing that I live in VT and have seen Bernie around from time to time, I knew this meme was false.

I should have just left it there.

Right after the election when Facebook was not the place to be, I engaged in more than a few heated topics with some of my Facebook friends. All that happened from those heated exchanges was hurt feelings on both sides, each person trying to prove their point, no one listing, and heels being dug in even just a little bit deeper.

I mean really has anyone read something someone said in a Facebook political argument and gone, "Oh you are so right, I am totally going to change my view now"?

Nope.

Also in the process, I really started to think, "Who am I to tell someone they should think or feel a certain way"? My political viewpoints completely switched once I became a special needs parent. Due to my life experiences, my point of view has changed, however, I am fully aware that other people have different life experiences and well, they have a right to their point of view too.

I am in no position to say that my hard is harder than your hard.

So, I made a resolution to myself. I am not going to post about politics on Facebook and I'm no longer going to engage in political conversations on Facebook.

It just isn't worth it.

And then I saw this meme and I was like this is so beyond fake, I just can't let this one go. So I quickly looked up the story on Snopes and it was verified as false.

I, hastily broke my resolve and posted the Snopes link to my co-workers Facebook page and waited for his response.

The banter went back and forth. It was a respectful, witty, and sarcastic. However, I actually learned why my co-worker is anti-Bernie and it totally made sense to me.

Maybe, Facebook political arguments can change people's minds after all?

And then, someone else jumped in. A person I don't know, and probably won't ever know.

His comment wasn't kind. It wasn't witty. It wasn't playful banter.

It was downright mean.

Keep drinking the koolaide....the point is that he is a giant hypocrite you libtard. 


To be clear, I wasn't upset that the meme was anti-Bernie, what bothered me was that the meme isn't true and that the posted meme is made to insight anger and further divide us as a country. The meme is designed to make our political and social environment even more polarized.

I don't want to continue being polarized.

If you want to post something that is anti any political party, by all means, go for it just make sure you can back it up with facts.

You know the actual truth.

And yes for the record, the left puts out just as much fake stuff as the right does.

Alright, I digress, back to that comment....

Keep drinking the koolaide....the point is that he is a giant hypocrite you libtard. 


Libtard.

Liberal retard.

Tard.



It isn't the first time I've seen it, but it was definitely the first time it was directed at me and it instantly made me think of my child.

See, random person who called me a libtard my son has special needs, along with millions of other people living in this country.

A label that a few short years ago would have required my son to attend a "special school" or even worse a mental institution. A label that separated people who are different, as less than, and not worthy of our resources.

It is an ugly, hateful, and vile reminder of how the special needs community used to be treated.

And no I'm not saying this as a butthurt liberal snowflake that needs their safe space.

This is about how he should be respected as a human being.

This is post is explaining why this word shouldn't be used in combination with anything political.

Because, well my son is eight and he has nothing to do with politics.

How has a combination of this awful word become part of everyday slang?

How this okay?

How did it become acceptable to combine the word retard with anything?

To essentially say to someone because you have a different point of view you have to have a diminished mental capacity.

See eight-year-olds with special needs aren't conservatives, progressives, or liberals.

They are just kids.

Kids who are innocent, pure, charming, hilarious, loving, and wonderful human beings.

So maybe just maybe this can be the one time you can actually be swayed by a Facebook somewhat political post... and let's just leave the word retard out of politics.

Thanks.



xoxo - the chaos manager 














Sunday, February 4, 2018

Oh Yea, Basketball

Four years ago I sat around a table of educators for my first IEP meeting as a parent instead of a teacher myself. The meeting was held in Mr. M's preschool classroom which required all the adults at the table to squeeze their adult-sized bottom into a chair designed for three-year-olds.

There we all sat, and I listened to his educational team. I am a rule follower so I sat in the meeting and followed the agenda until the very last item came up, which was labeled as "other". I waited until it was time on the agenda for the floor to open up to the topic of "other" and I explained my concerns about an assignment that was sent home.

While I was discussing my concerns about the assignment, I said to his team, "I know my child is different, I know that he will never have the opportunity to play an organized sport".

Yesterday, I sat on a hard gym bleacher designed for adult bottoms about 2,000 feet away from where that first IEP meeting took place and cheered on Mr. M as he played in one of his final recreational basketball games.

Funny, how often we think we can predict the future.

Now, I would love to tell you that this is a FU to autism and that not only did Mr. M play but he was one of the top players on his team, but this isn't that story.

The truth is that Mr. M was easily one of the least skilled kids on the court. When practicing bounce passes he would duck from the ball, every shot was an airball and forget to concept of defensive gameplay.

I guess some people would stop there.

I surely would have stopped there before I had a child with special needs.

If he can't pass or score a basket it is easy to say he has no worth to the team.

I can see where a coach or a community would feel this way.

However, I feel very fortunate we live in a community where this opportunity isn't stopping here.

Instead, we found a coach who said, "So what we will work with what we got." A coach who stands next to Mr. M and puts his hand out right before the ball comes to stop the momentum just enough so Mr. M doesn't duck. A coach who when Mr. M is confused by the concept of subbing gently reminds him that it is his turn to play, a coach who pulls aside Mr. M to explain once again that when shooting his hand should go under the basketball.

A coach who meets Mr. M where he is at, but also has a high standard for him.

So with his lack of skill and extra time required what does he add to his team?

It's a fair question.

Well, there isn't a louder or more supportive team member than my little dude.

He cheers for anyone who makes a basket.

He doesn't care about score.

He follows directions.

He waits in line for his turn.

He willingly shares the equipment.

He doesn't stop smiling.

He does care about playing time.

So yes, I would say that he add a lot to his team.

As this basketball season wraps up, all I can say is that I am extremely proud of Mr. M and even more grateful for his coaches.

And maybe, just maybe this it is a little FU to autism after all.



xoxo - the chaos manager