A family's story

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.

 

 

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Comments on: "Speaking Up" (12)

  1. 10 years into the journey here and I still stumble when I tell people my son’s “label”. It is a journey — a long one — but that’s because there’s so much you’re going to learn along the way. Good job, mama bear.

  2. Sounds like you said your piece in a very well thought out way. Even if the man was resistant, your words will resonate through his head now as he thinks about things.

  3. It took my parents a long time to be comfortable with Little Miss’s label. Sometimes I think my dad is still uncomfortable with it — but with time, they have both come to accept the fact that the label has helped their granddaughter. Hopefully, with your help, neighbor #2 will see that too.

  4. Good for you for speaking up. I hear those conversations too often. It stings when I hear it. So many times I just get so bamboozled (if that’s a word) that I just can’t talk, I just have to walk away. Good for you for being able to say something, Mama Bear.

    • I have also been bamboozled by it. I’m getting a little more comfortable addressing it, though. Hopefully you will, too! Thanks for the support!

  5. I think “labels” can only help your child. I would had spoken up, too. Since my daughter was diagnosed with autism in March, there are more services for her than before. Without that “label” she would not get those services. I think your neighbor will come around when he is ready to.

  6. People often fear what they don’t know and don’t understand. “This label”, as you know, does not define a person; it doesn’t predict who they will become or what they are capable of doing. “This label” helps foster understanding and growth. Like you said, it is a journey to acceptance; hopefully your neighbor will one day realize that knowing a child has an autism spectrum disorder only moves them forward and doesn’t hold them back. Way to speak up!

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