Sunday, July 2, 2017

Oh Crap, She Just Told Me Her Kid is Autistic

*This post is not sponsored, I just feel that this is an excellent book and one that everyone should read.

It is no secret that I am pretty open about Mr. M's diagnosis. However, I have to say, I have gotten better about not blurting it out within the first five minutes of every conversation.
Why am I so open do you ask? Because it is such a big part of our lives and I'm really not great at coming up with witty ways of saying it without saying it, so most of the time I just go with the truth. 

And here is what I get in response about 99% of the time when I tell someone that Mr. M is on the autism spectrum: 





Followed by a look on the person's face that screams ... Oh crap, she just told me her kid is autistic and I have no freaking clue what to say next. 

Listen, I get it. I have been in that situation more than once where someone says something to me within our conversation and because I just don't know what to say, I don't want to hurt their feelings, I don't want to say anything taboo or just look like a complete jerk, I just don't say anything at all. 

This doesn't just happen with strangers that I meet in the park, but it also happens with my close friends and family. It seems like people just don't want to say the wrong thing, so they just don't say anything at all. But, when most people you know gloss over the fact that you have a child who has has special needs, it starts to feel pretty lonely. 

So if you are ever in the situation where someone has just told you their child is on the autism spectrum or you're wondering what in the world you can say to your friend, co-worker, cousin, sister etc. here are some perfect things to say (and I can guarantee they won't want to karate chop you in the throat!) 

1) I don't know that much about autism. Would you be willing to share with me what autism is like for your family?

I love to talk about autism. I love to share who we are and what we are about. I love to share our journey and how far Mr. M has come. Also by leaving this statement open, you aren't making any assumptions that Mr. M has super mathematical skills or is a music savant because he is on the spectrum. You are simply trying to get to know him better. 

2) Tell me something that you have honestly noticed about my son and complement him on the skill or trait. You noticed that Mr. M has beautiful brown eyes, or that Mr. M does a great job being kind to his sister, or that Mr. M really rocks those monkey bars.

If you personally know us and haven't seen us in a while, I love to hear what you have seen Mr. M improved upon. You have the benefit of seeing Mr. M every once in a while, and why I am all hands on deck all the time, sometimes I forget what progress has been made and it is nice to know what you have noticed. 

"Wow he is talking so much, or he is doing such a great job playing with all the kids" this allows me to step back and see, that we really are making slow, steady, and more importantly noticeable progress. 

3) Complement him and or me on his behavior when he is acting correctly. I often feel like I am part of  a walking circus. So, when you notice that Mr. M used, his manners, or was acting appropriately compliment him. 

It is so nice to hear, your little boy is so polite when your life revolves around behavior management.

4) Oh, and how are things going? Yup, it is as simple as that.

It is short and sweet and leaves it open. 

5) If you know a person close to you that is on the autism spectrum and you have a success story, by all means, tell me all about it. 

Your co-workers son who is on the spectrum just graduated from high school and is going to college in the fall, or your best friends daughter just made the travel soccer team. I love to hear about other people on the autism spectrum and their successes. 

6) Oh, do you know of - insert amazing resource here -  for kids who are on the spectrum by all means, tell me all about it. VT is full of amazing resources for kids on the autism spectrum and while we know about most of them, we definitely don't know them all.

However, a word of caution, do not under any circumstances start to mention any wacky cures you have heard of, Jenny McCarthy, or the vaccine debate.

7) I read that about that on your blog (just kidding, well sort of). 

I am writing this blog for a fair amount of reasons, but one is to connect. If you read about it, then it fair game to talk to me about it.

8) You are doing a great job. 

Sometimes, it is just good to hear from others that you are rocking this parent thing. 

9) Anything, really. I would much rather hear someone stumble through an awkward response, then say nothing at all. 

Saying nothing at all, makes Mr. M's disability feel invisible. So if you are ever wondering if you should or shouldn't say something, always go with saying something! 

So there you go, nine different ways that you talk to a someone be it a stranger, a close friend, or a family member about their child's disability without making them want to karate chop you in the throat.  

This picture doesn't have anything to do with this topic, but I just love that huge smile! 

I hope you enjoyed my list, do you have any suggestions that I missed? 

Monday, June 12, 2017

The Mystery of Autism

Your brain is a mystery to me.

The way it works confuses me.

The way it functions frustrates me.

Sometimes when you are deep into a meltdown, I picture myself like Mrs. Frizzle and her class on the Magic School Bus. Do you remember the episode... you know the one we have watched it a thousand times.... the one where Ralphie gets sick so Mrs. Frizzle turns the bus, herself, and the class into the size of a pill?

Remember, she had Ralphie swallow the pill, and they move throughout his body.

I want Mrs. Frizzle to turn me into the size of a tiny pill... so I can understand the mystery of your autism.

How do the neurons and synapses function in your brain?

I want to be inside of your brain ... I want to hear what your brain says to you.

I want to hear how loud it is.

I bet that it is deafening. 

I want to hear it repeat the same message to you.

This is different.... I don't like different... Different is scary... 

This is different.... I don't like different... Different is scary...

This is different.... I don't like different... Different is scary...  

Over and over again.

I want to feel what it like to stim.  I secretly imagine that it must feel like the best foot massage in the world.

I want to feel the control it has over you.

I want to know why stimming is more important than watching tv, playing a game, or reading a book.

I want to see all the images that float in your head. The sight words that pop in and out of your brain, the brand logos that you can pick up on from a mile away, and the numbers you have memorized.

I want to learn how the routines start and why they are so necessary. Ones like, "I only play board games during therapy, I do not play game board games with my family."

I want to fix the bridges that aren't connecting, so it doesn't take you years to learn the simplest of tasks.

I want to know why some days you can communicate anything and everything that pops into your brain, while other days you can hardly tell me what your day was like at school.

I want to hear what a song sounds like to you, and feel the complete enjoyment that it brings.

I want to learn how your memory works. I want to know how much you really remember and how far back it dates too.

I want to know how you are able to remember and recall the smallest of details of our daily events... even though it doesn't seem like you were engaged at the time.

I want to understand what is like to be an individual on the autism spectrum.

So I can be a better parent for you.

xoxo - The Chaos Manager 

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!