Wednesday, October 11, 2017

Explaining Autism - The Parents’ Version

I saw a video on Facebook this morning:

This is one of the most accurate examples of parents explaining Autism behaviors I have seen. I especially love the one about the child repeatedly spinning the toy helicopter propeller.

“What I realized is he’s not just repeating the same pattern. He’s observing everything. He’s observing this creates wind, and it moves the dust particles around”.

So many behaviors are written off as just “Autism” and believed to have no meaning, just a pointless response that comes across odd or exaggerated. 

Slowly the world is learning that everything has a reason and these children are given beautiful, amazing gifts. We just have to “catch up” and think outside of the box in order to recognize some of them.

Boog does things at home and all I can do is sit dumbfounded. A couple of days ago he wanted to make sure he spelled “curriculum” correctly. He’s seven years old. I have an MBA and yet I still worry I’m not moving fast enough to give him the answers he needs. 

This is the future and it can be very difficult, yet it is bright. 

Thank you, Spark for Autism for this eye-opening, positive video.

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Thursday, October 5, 2017

What’s in a Name?

I don’t completely know why, but when people state that someone is “autistic”. It mildly annoys me.

I feel that word immediately makes the listener think it’s all encompassing.

“She is deaf.” - You immediately think that only said person’s hearing is impacted and all other facilities remain “normal” for the person.

“He is blind.” - Again, you only think of the eyes.

“He is autistic.”
I believe the listener or reader may assume the person with Autism has below “normal” capabilities in every category and that Autism is a whole, encompassing problem.

I admit assuming this myself.

Years ago I walked in a charity fundraiser. It was required in my job that you have to do a certain amount of community service. The local “Walk for Autism Awareness” just happened to be nearby and on a weekend I was free. I didn't think much past that.

While at the walk I read the signs and t-shirts and it finally sunk in that this was raising money for children with Autism. I’ll never forget what I thought back then:

Those poor parents.
These kids are violent and out of control.
These are the kids that wear helmets because they self harm.
These kids’ future will be incredibly limited.
These kids are probably, or will end up in an institution.

Yep. That was my thought process. Hell, I was even a bit nervous. I knew nothing about Autism other than the stereotypical description. I was even mildly on edge that one of the kids at the walk may hurt me. It’s true.

Where did that one quote come from? “People fear what they don’t understand”. That explains me exactly at that time.

I don’t want people to hear “He’s autistic” and base their view of my child on that one word. I freely admit I have become quite a bit defensive, so when speaking to someone that doesn’t know us or anyone with Autism, I choose one of these routes:

Option A:
I tell person I have a son.
Immediately after I show a picture on phone of how beautiful and happy he is.
He looks “normal” to the other person.
Then I mention he has Autism.

It’s one thing, not everything.

Option B:
Yes, my son has Autism (then immediately said), “but he’s great and doing really well in school and really smart and has a huge vocabulary and he types words well above other kids his age!”.
It’s one quickly-spoken run on sentence meant to stop the stereotypical thought before it starts.

So there I am, too worried the A-Word will diminish a person’s perception of my child or that the person will then pity me. I’ve gotten a lot of that too. I say he has Autism and I get a sad look in return, or they assume I’m some sort of super-mom because I’m still standing, or they even reply with “I’m so sorry”.

Please don’t pity me. I know you mean well, but pity means something is terribly wrong or impossibly hard in my life. Instead, please have a bit of empathy and think that although my job may be harder, I am still just a Mom. I deal with most of the same things other moms do, it just may be a bit differently or later on.

Just be kind and do exactly what you would do to anyone else. Ask his age, where does he go to school, what books or shows does he like, any basic question is welcome and appreciated. Don’t be like the idiot a couple weeks ago who actually responded with “Is he high functioning?”. What if he wasn’t? Does that mean he’s not a real person? He’s doomed?

She’s lucky.
Very lucky I knew going to jail would be both expensive and problematic.

So, that long explanation above is why I choose to say:
“He has Autism” instead  of “He is Autistic”.

-Boog’s Mom
(that likely overthinks everything)

***** P.S. This opinion is mine only and my choice on how to describe Autism. It in no way is trying to paint any dialogue or descriptions in a negative way. This is merely a narrative of my personal thoughts.

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Thursday, September 28, 2017

“Skipping” for Joy

We are truly blessed. A school specifically for children with Autism has opened this school year. That alone is **huge**.  I had been looking for this exact type of school for weeks, but unfortunately was having no luck and feeling horribly frustrated.

I was so sad that we may have to split up our little family in order to find a school out of state when out of the blue a friend told me about this new school. I got off the phone with her and have never made a call so fast. I applied that day. They gave me paperwork to fill out and bring back. I went down to the coffee shop, filled it out and brought it right back. I was probably looking a bit loony, but the school was PERFECT.

As if that isn’t enough, some of the best people Boog has worked with are the faculty! The school had a meet-and-greet a while back and some people probably think I was drugged or insane. I just walked around this completely redone building that was functional, simple, modern and every part designed for children with Autism. I kept hearing more and more wonderful things they planned for the near future. I kept seeing more and more familiar faces of people who have helped my son over these years with love, patience and kind hearts. I was overwhelmed with joy! I literally looked like one of the kids from Willy Wonka and the Chocolate Factory seeing the vast room of candy for the first time.

Before the school began children that were applied for had to go through a multi-day assessment. Boog knocked it out of the park all by himself. I wasn’t back there with him to cheer him on. He did it himself. He showed them what he could do, was working on and his amazing kind personality. Did I mention I was proud of him?

The school has “levels” instead of grades. I love it so much. Grades are based by age, whereas levels are based on age/academics/independence. I remember kids that had to be “held back” to repeat a grade when I was in school. Looking back I can only imagine how that may have felt. Everyone knew that child had been held back because they weren’t in our classes anymore. Who knows what that did to their confidence or how lasting the effects could be.

I was thrilled to have Boog in Level 2 (they have 1-3) and I was (yet again) incredibly proud of him. Then last week the faculty said they needed to speak with me after school for a moment about Boog, but it was good news. Even though they said it was great news repeatedly to me, I was still so nervous. I broke out in my highly annoying anxiety rash (bright red splotches on my cheeks, neck and chest).

A mother of a child with special needs often has to have meetings and discuss an issue or something that needs to be worked on. That’s why my anxiety started. It’s almost like PTSD. You hear that a meeting is needed and immediately prepare for the news. Sometimes you agree and the meeting is informative and very useful. Sometimes those meetings mean standing your ground, advocating and refusing to back down. Unfortunately my fight or flight response begins when I hear “we need to talk”.

I can honestly say this little meeting was one of my all time best moments of my life.

Boog had only been at the school for about a month and a half and he was already moving to level 3! These caring people took the time to bring me in and tell me face-to-face. I was stunned, elated, proud, thankful, and overjoyed. I cried. Like baby I cried. I stood up and walked over to the CBT we had known the longest, grabbed her and cried.

That in itself is beyond a dream come true. You know what else this means? Boog is *****one***** step away from general education.
General education.

For years I had fought to have Boog in general education for even 30 minutes a day and was denied every time. I wanted him around more than just the same few kids in special education every day. How can you push yourself if you never understand or see the goal in person? It’s like training to swim without using a pool. It’s like not allowing a person to go see a movie just because they’re partially deaf and use sign language to communicate. It’s like not allowing a child to go to recess just because he’s in a wheelchair. My child was segregated. If you think segregation in schools was a thing of the past, you haven’t been paying attention.

Yes, my son is non-verbal and that alone has pigeon-holed him for so long. It didn’t matter that he was typing more and more and his vocabulary was building incredibly fast. For years I have seen children move up to more challenging classes just because they could speak, not based on merit or academics.

The very first meeting I had with the new school’s Director and staff had me floored. She just asked which way Boog preferred to type and on what device. In this school words are words. It doesn’t matter if those words are heard, signed or read.

I’m so used to fighting. I’ve fought for over six years now. This school sees Boog’s potential. They believe me when I tell them he’s doing something new. They understand, and because of this understanding, they see Boog’s abilities and his potential.

There’s no way I can thank them enough, but I will try.

-Boog’s Thankful Mommy

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