Label Maker

I’m not much for tears.  I mean I am capable of producing them and I do on occasion.  But at the moment they are pouring down my face and I can barely see what I am typing.

We had a monthly review at RM’s outplacement school yesterday.  It has been six months since she started there.  This was the first review the SGM was able to attend, so I was anxious for him to get to see the amazing things the staff is doing with RM. 

It went very well.  It was organized a little differently than a typical review because the staff wanted SGM and I to help them complete a survey first.  So rather than get to see RM at work right away, the grownups gathered in a conference room.  We were asked a few dozen questions about situations that may be stressful for RM.  For example, on a scale of 1 to 5 – how stressful is it to RM to take a trip to the grocery store?  Those kinds of things.  It was designed to help staff tailor goals and objectives to make life a bit smoother for her. 

Overall, it proved that RM is a pretty happy kid and though some situations are extremely stressful to her, many are not so bad. 

As we wrapped up the discussion so that we could head to the review room and see RM, we stopped on the topic of ‘fear’.  Well.  RM lacks fear of danger, like many of our kiddos with autism.  She is getting better at not running out into the street, but that’s from lots and lots of consistent programming – reminding – her not to just step right off the curb.  She doesn’t actually know that it is dangerous out there and if we weren’t around to remind her, she would totally run in front of a car without hesitation.  She has no fear of water and though she isn’t exactly a wanderer, she does have a pretty stubborn sense of independence.  Sometimes just being able to open something (like the door to the garage) is fun to her. 

So we concluded that an ID bracelet is a really good idea.  The staff will work-in a tolerance program during the school day to get RM comfortable with wearing the bracelet.  The goal is that eventually, she will wear it 24/7.  It was a great idea and at the meeting I felt comforted and relieved at the decision. 

But then this morning, I actually had to order one. 

When I clicked ‘Pay Now’ it was like a stab in the heart and the tears just started pouring. 

It hit so very hard that I am essentially putting a real, tangible label on my child.  

She has: ‘AUTISM.  If lost call 911’ 

I’m still crying.  It still hurts.  Not because of the autism itself.  Not because of who my daughter is.  I hurt because of the dangers that exist in this world and my beautiful daughter’s inability to protect herself from even the smallest of them. 

I cry because my daughter is SO MUCH MORE than a label around her wrist. 

I cry because no matter how much it sucks, I will do ANYTHING I can to make this world safer for her.  ANYTHING.

I’ll even slap a label on her.

Because I love her THAT. MUCH.



About Rachel Kenyon

Rachel Kenyon is an Aspie, Advocate and single mom of two beautiful babes - The Boy (11) and RM (8). The Boy is a Legomaniac and RM is a kick-ass diva with Autism and 4q Deletion Syndrome. View all posts by Rachel Kenyon

5 responses to “Label Maker

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