A bead on a string

Lizze made a very interesting observation this morning.  It’s more like a way to describe something we have been seeing as of late.  I wanted to share this because I thought maybe someone can relate to this.

For many years, Gavin’s level of functioning has been a moving target.  Sometimes he’s very high functioning and other times he just seems to lose skills that he has previously mastered. 

To say this is frustrating is an understatement.  It’s also heartbreaking to watch as your child struggles with even simple, 1 or 2 step tasks. 

Lizze asked me earlier today if I’ve noticed how Emmett is like Gavin? I wasn’t sure what she was talking about. 

She explained that Emmett is like a bead on a string. This means that his level of functionality seems to go up and down, much like a bead would slide back and forth on a string.

I had never heard it put that way but she’s absolutely right and that was a very good way to describe both Emmett and Gavin.

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A bead on a string.  I think that Gavin’s reasons for sliding back and forth on the string is more biological.  In Emmett’s case, I think much of his reasons revolve around his circumstances and not so much his biology.

Either way, the point was that Emmett is experiencing regression and loss of previously mastered skills. 

Whether situational, biological or some combination of the two, it’s irrelevant because this is definitely cause for concern.  It’s not We’ve already talked to Dr.  Patti about this and at this point, Gavin being removed from the house is a good start. 

The next step is stabilizing his little world and making sure he gets all the help he needs. 

A bead on a string. I really hate the situation but like the way Lizze choose to describe it. 

Do you know anyone that’s a bead on a string??

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Silachan

I’m like that myself. I think many ASD people are. I have days where I’m capable of doing many things, but then others where i’m housebound and can’t even handle simple things. It’s environmental and situational for me.

lostandtired

@Silachan I totally agree. Well said. I like it as well. 🙂

MeaghanGood

@Silachan Me too.

AlanaJulianaSheldahl

Yes. My 18 y.o. is like that. Hormones, hunger levels, noise and environment affect her greatly. We also suspect chronic migraines.

lostandtired

@AlanaJulianaSheldahl thank you for sharing.

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