a tale of two incidents

The Happy Incident

Sometimes my mushy brain gets the best of me. Which is precisely what happened for Trevy's Speech Therapy this week! I booked it right smack in the middle of his nap time. So needless to say he wasn't very cooperative. Although he was groggy-happy to see Ms. Speech and all her toys.

And we just went ahead and slogged through the session.

Sleepies tend to bring on seizures. And at one point...Trevy did what he often does right before a cluster. He toddled over and plopped in my lap. Started smacking his lips. And picking at a toy. It's almost like he's sleep walking. A part of him is there enough to know where I am in time & space to find his way there. But another part is lost in seizure land. And his little eyes & face look vacant.

Now...I know these cues like the back of my hand. To me it's all unmistakable. The lips. The missing Trevy. All of it.

But the amazing (in that happy-heartbreaking sorta way) was that Ms. Speech NOTICED the cues too!

I haven't analyzed all the whys of it...but for some reason it's really important to me that others notice. I suppose it's because I hate the fact that something SO dramatic...can be SO easily missed? And I've hated the thought of Trevy being in a school...away from my obsessive eyes...and wondering how many times his little brain & body were bullied and attacked and nobody knew? It's really important to me that somebody (besides me) knows. And to me it was special that Ms. Speech did.


The Whats Stronger Than Annoying? Incident

It still feels weird for me. Being in public when Trevy has a cluster. I don't know...for me it just feels weird. Like the last time I was at the market...Trevy was sitting in the cart having a cluster...while the lady behind us in line chatted him up! It throws me for a loop that she didn't think his rhythmic jerking to the right wasn't normal?! But then again...

But there are some people that I DO feel should know a seizure when they see one.

For instance...in Music Class the other day.

An Early Intervention CASE MANAGER went to hand Trevor a tambourine just as his little body jerked to the right. Instead of a seizure...she saw a head shake of NO! And quickly mumbled something about him not having to take it if he didn't want it! I willed myself not to gather every single tambourine and bonk her on the head for missing a SEIZURE!

It was offensive to me that she not only missed the seizure...but gave Trevy credit for a skill that he has yet to conquer.



Soooooooo...if you're still reading at this point it's probably because you've had a similar experience. Or can relate in some way...

how did you handle it?

By bonking heads? Or being gracious? Or maybe you have a well crafted comment? I had a great one of those when complete strangers asked if I was nursing!



~Mama Skates~ said...

i'm not quick enuff 2 think of "the right thing" 2 say...i prob wouldn't say anything & post a blog about how it irked me ;0)

i'm sorry that the ones that should see it, aren't...but thrilled that ms. speech is one that does - i totally get that...about wanting others 2 see something that may b hard 2 see, but rocks trevy's world so hard...something so devasting to his little brain...of course u will always b the one 2 see it first, 2nd, and every time after - u've got that mommy eye!

luv ya girl!

Ian Marrey said...

dunno, i quite like the idea of those who should know noticing but i hated it when people looked at jude and knew something was up - that's why we worked so hard at getting rid of the feeding tube....bit of a give-away that.

we have a pushchair/buggy/pram on order and like every other 'special needs' accessory, it looks like it should have a label on it saying 'look at me, i'm different'.

it took us a while to notice what jude's seizures were and we live with him, perhaps it's not fair to expect someone else to know instinctively.

dunno, sometimes but sometimes not


Shanna Grimes said...

I know it's hard sometimes, but think back to when we wondered if what we were seeing was a seizure. I think people for the most part just don't know unless it's something complete unmistakable, like a complete loss of body function and foaming at the mouth. That is what the world at large thinks of what epilepsy looks like, much like most of people think of Autism looking like "rainman". I can't tell you how many times people have asked me if Javi was really good at math or if he could count cards :)

I just do my best to try to educate them. That's all you can do :) Hang in there! Great news from Ms Speech too!

Hollis T said...

Yep. That happened to us countless times with Hollis. Her seizures looked like quick little drops of her head sometimes and other times it would more obvious to a "layman". I was always shocked when I'd have to tell a doctor, "Here's a seizure". Do they only teach tonic-clonic in med school? My comment to folks who didn't recognize them, but would still be trying to communicate with her was a simple, "Hang on, she's just having a seizure". That usually makes people snap to attention.

Mmmmaaahvelous said...

Yup, I get it. Your wanting people to notice and figure it out. Like...HELLO!! It's important...makes me feel sane, like I'm not exaggerating and making this all up.
No witty remark here...I just straight out and say to everyone we're around when they happen, "Oh! Seizure! He's having a seizure." Then I go from there...whether they're open to more information or whether I need to shut down their insensitive comments. It really weirded me out the first time strangers noticed...good that they did, but at the same it really sunk in to me that this is something we may be explaining for the rest of his life...and eventually that he'll have to explain to people. The gamut of emtions run wild for me.
Yay for Mrs. Speech! She's got my vote.
You'll find a method that's comfortable and effective for you to handle the publicity of seizures. Don't ever worry about what other people think. It's our chance to plant that seed of awareness & protect our babies. That's always what it boils down to isn't it?
Hugs to you!
PS: Sorry to be so longwinded!

Holli said...

Yep, it bugs me too. Some are too subtle for anyone but maybe me and my husband to notice. But those big head drops! C'mon! Our pedi, who had yet to witness one of Austin's, actually talked through a cluster as if nothing was happening. Even some of our close friends and family members think it's a reaction to what THEY say and think it's cute! Unbelievable! I have to point out, HE JUST HAD A SEIZURE!
I guess it bothers me because I instictively knew something was wrong the very first time I witnessed one. How could anyone else not tell? It's not so much acknowledgement that I want from them...I just can't play into their thinking it's cute or funny.