A family's story

Posts tagged ‘Autism Acceptance’

Semantics

This morning as I was chugging along on the treadmill, I decided to scroll through Facebook to entertain myself. The impending change in weather made it onto a few of my friends’ pages. (Mine, included.) There were posts about Lady Gaga, posts about Leonardo DiCaprio, posts about Chris Rock and the Girl Scout cookies, and posts about John Oliver discussing Trump. #MakeDonaldDrumpfAgain (That’s as political as I intend to get here.)

I noticed that a friend of mine had posted something on her page about autism and “gut” bacteria. I debated just letting it go, but I decided to read it. It was an almost two-year-old article about the link between autistic behaviors and “gut” issues. I read it. It’s information that has been churned out several times. I don’t disregard that many autistics have issues with their GI tracts and such. I have seen that. I’ve experienced that. But the headline of this particular article baited readers into thinking that “gut” imbalance CAUSES autism and a “simple” daily probiotic would make challenges disappear…. Pffffftttttt.

I did respond, saying that while there may be some correlation, autism is neurological in nature, and really is the way the brain works.  I noticed that someone had posted about the fact that “wouldn’t it be great to do a combination of behavior therapy and probiotic to help autism, which proves it isn’t caused by vaccines and is a “birth” defect.” I knew what the person probably meant, but, I took a little umbrage to the use of the word, “defect”.

Now, my son has challenges. He has deficits as compared with like-age peers in terms of comprehension, language, processing, etc…but “defective”? I can’t buy into that. When I looked up the word “defect” in the dictionary, it stated, “a shortcoming, fault, imperfection”. Aren’t we all a little defective, then? I mean, really.

I then looked up the word “disorder”. When applied in a medical sense, it was listed as, “a disruption of normal physical or mental function”. Well, we all know “normal” is just a setting on a dryer. Does my son follow neurological development of other children his age?! Hells no–so yeah, I guess disorder applies. Further down, I saw a definition of “disorder” as a verb listed as “disrupt the systematic functioning or neat arrangement of”. I chuckled at that definition, especially when I consider how routine-dependent my son can be. And have you seen the way he lines up his Paw Patrol guys?!

We also refer to autism as a disability. Sooo, I went to look up the word “disability”. Dictionary.com says, “A disadvantage or deficiency, especially a physical or mental impairment,that prevents or restricts normal achievement.” (emphasis is my own) My son approaches the world from a different angle than most. I wouldn’t say he’s wrong. Just, well, different. As long as he has success and happiness and support..well, I think the kid’s gonna be all right. I will concede that it may take him longer to arrive, but he’s going to get to the finish line. He will.

I guess what I’m getting at is, if that person says, “potato”, I say “potahtoh”. She says “defect”, I say, “Unique vision and approach to the world.” And let’s just leave it at that….

 

Speaking Up

This past weekend we joined our neighbors for a few beverages around the fire pit. It was a comfortable temperature for September, a little humid, but not unbearably so. As we sat and chatted, I tried to fight the fatigue that had set in from a busy week. I kept to myself during most of the conversation. It was nice to be outside, sans children, and just enjoy the peace and quiet.

At one point, two of my neighbors began chatting about the kids, as we parents tend to do. Ms. Neighbor #1 was talking about the kids and how much fun it was to watch all 8 of our kids interact on Friday morning before school. She remarked to Mr. Neighbor #2 (the one with the son who reminds me a lot of Tate back “in the day”), that his son is really moving and shaking now. He shook his head and sighed, “yeah”. Mr. Neighbor #2 mentioned that their little boy is finally starting to talk a little bit. A little. He expressed frustration at the fact that his son wasn’t very talkative yet at all..and that he’s over age 2 now. (Hubz and I shared a few leg bumps…we totally get it.)

Ms. Neighbor #1  recalled that Mr. Neighbor #2’s daughter was also speech delayed, and how now, the daughter is a chatterbox. (However, if you talk to Ms. Neighbor #2, she’ll tell you that the language with adults is mostly functional, while the language with peers is mostly scripts.) I mentioned that the son is in Early Intervention. Ms. Neighbor #1 didn’t know that. Mr. Neighbor #2 acknowledged that his son is in EI and that he’s just so frustrated.

Mr. Neighbor #2 went on a bit of a rant at this point. (As a parent of a developmentally delayed child, I completely understand it. I remember BEING there.) He went on about how in about 6 weeks there will be a meeting, which Hubz and I figured out must be an evaluation. He went on to say that he doesn’t want his son to have a label. How this label would follow his son for the rest of his life, and he doesn’t want his son seen as this label. He couldn’t understand how this label would do any good, and how can they tell at age 2, that his son was always going to be seen with this label.

I felt my heart rate increase. My palms got sweaty. My head started to pound. I wanted to pounce, to attack, for lack of a better word, because the disdain in his voice as he talked about this label, made me ache for Tate. For Jake. They both have labels…although, I knew which label Mr. Neighbor #2 was talking about. The fear and the perception of the ugliness of this label that he was expressing, both verbally and non, brought out the mama bear in me.

I took a moment. Hubz started with a “Hey, now…it’s not…”

I cleared my throat. I could NOT be silent. I interjected…

Speaking as the mother of two children with “labels” (I did those obnoxious air quotes.) and IEPs, let me say this…while it may be hard, we have found that getting an official diagnosis has helped more than it has hindered our boys. Tate, especially, has benefited from having that autism diagnosis. His services increased. His team can better help him at school. We are getting the right therapy for him to help him grow. He’s come a long way. SUCH a long way. We are better able to understand the “why” behind some of the behavior. 

I wish we would have gotten a diagnosis sooner. They can tell if he’s autistic (yes, I said it. I gave that label the name that Mr. Neighbor #2 wouldn’t or couldn’t) at age 2, and while he may lose that label, or it may change slightly as he ages and gets re-evaluated, some kids do; I don’t think there’s anything wrong with getting a diagnosis.

Hubz had my back and supported what I had to say. Love that guy.

Mr. Neighbor #2 wasn’t sold. I didn’t expect him to be. He talked about how when we were kids this wasn’t as prevalent, and how he sees some of the same stuff in himself that he sees in his son. And does that mean he should be..or not. Or why is it so common now?

I know that he needs to wrestle with this on his own (and with his wife, who wasn’t feeling well and wasn’t hanging out with us that night). And maybe their son is just delayed and isn’t on the Autism Spectrum. But if his son is, I want him to know that he’s not alone as a parent. Acceptance is a journey. It really is. We’re 7 years into this journey. We’re still learning as we go…but hey, we’re a heckuva lot more comfortable with where we are now than we were 2 years ago. And someday, he will hopefully be comfortable with this label, too.

 

 

Autism Acceptance

We’re here again….April. Today is World Autism Awareness Day. Pretty much everywhere we look there is some message about autism. I admit, I am wearing my blue today. I have on an electric blue sweatshirt. I clipped my blue hair clip into my hair. All 3 boys are wearing blue. Hubz is, too. Also? Hubz put the blue lights outside last night. It is hard to miss that this family is trying its best to spread Autism Awareness and Acceptance.

Now, the wearing blue, the lights, the changing of Facebook profile pictures…those we do for us. Hubz and I go through these motions because we want to let people, and especially our son,  know that we support and accept those who are autistic. And we support all of the numerous other parents and autistics out there. We do. We may not fully understand where each and every one is coming from, but it’s our way of saying, “me, too”.

At age (almost) 7, we have just started telling Tate about his autism. He looks at us while we try to explain it, and while we try to explain why he does therapy, but when we search his face for a sign of understanding, it isn’t quite there. We’ll keep talking and explaining, and one of these days he will (hopefully) start to better grasp the message. And, as he starts to understand more about himself and what makes certain things hard for him, and other things second nature, he will hopefully see that we have unending support for him. We will have his back. Always.

And as he starts to become more self aware, and is able to communicate how he wants us to handle Autism Awareness/Acceptance Day, we will follow his lead. Because, after all, this is about him, and who he is….that joyful, smart, fun-loving kid who loves fans, trains, numbers and (currently) Doc McStuffins.

Tag Cloud

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