Words and meds and more words

12 Aug

This has been the Summer of the Seizure Meds – or “The Great Weaning Experiment”.

After her latest EEG showed no seizure activity, we went ahead with attempting to wean Maura off the seizure medication she’s been on since December of 2007.

When she started on the seizure meds, I noticed that her balanced improved greatly and she started speaking more.  Now that we’re weaning her off them – I’m noticing she’s talking more again.

Funny how that works.

We’re down to 2 mls twice a day, which is probably less than what she originally started on all those years ago.  Last night, as she chattered away, giggling and laughing and being so very “on”, my husband joked “Can we put her back on the meds, just to chill her out a little?”  Because holy cow!  Usually at night, she’s tired.  These days, she’s wide awake.  (Of course, that could be because she’s being allowed to sleep in every morning.  The girl is not a morning person, never has been.)   And the words are coming out more.  Oh, she’s not suddenly “normal” – she’s not bursting with newfound maturity to a degree.  She’s still Maura.  But the words – the songs. She’s singing along with songs much more.  And speaking lines from movies (not in an echolalia way, just along with them) – needless to say, if I say “He’s a llama!” she can say “He’s supposed to be DEAD!” – yes, “The Emperor’s New Groove”, why do we even HAVE that lever? Also, singing along with all of “Let It Go” and My Little Pony songs I didn’t even know she knew.

Knock on wood, but I think it’s going well.

She’s still a bit of a squirrel, still has her opinions and tantrums, but we also have more words.  More words in a row. It’s a gift that I’ll take.

she can't really read yet...but she loves books just the same.

she can’t really read yet…but she loves books just the same.

 

Oh, and Maura decided that she wanted her hair cut.  Why yes, I immediately jumped on that before she did it herself, lol!  We’re back to a bob, and she loves the feel of it on her shoulders.

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Happy with her haircut

 

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Responding to my own post – regarding “Staring”

9 Aug

Yesterday I wrote about dealing with the rubberneckers of life when Maura’s having a loud, public meltdown.

I’ll admit, I was a bit surprised by a few of the comments.

Yes, there were those going “Ignore them!” (I tend to) and “BTDT”, to which I salute you, fellow parents living the dream.  But then there were others who tried to explain why they look upon us.

I get to a degree, why people look.  I mean, if a child starts shrieking as if set on fire, it is totally natural to turn your head and see if the child is actually on fire.  Once you assure yourself they aren’t on fire, really, it’s time to move on.

Some of you promised, you’re not really gaping – and I do believe you.  These are the reasons for looking at the screaming child left in my blog comments -

Wondering if the child’s in pain.

I can tell you that when Maura’s having a meltdown, she’s not in pain.  When you have a child who doesn’t communicate well verbally, you actually become quite tuned into their cries and attitudes.  Maura has a fake cry (and I’ll say “Wow that’s fake” and she’ll laugh), a mad cry, an upset cry, a sad cry, and actually gets really quiet when in real pain.  If it’s a knee scrape, she will cry, but not to the degree of a hungry/tired meltdown.

If she is hurt, I can also assure you that I wouldn’t be marching her sternly towards a time out.  No, I’d be kneeling down, giving hugs, pulling band aids out, doing something lovingly maternal to try to fix the problem.

Seeing if the screaming child is a student of theirs.

Well, that’s a new one.  I have almost never run into Maura’s teachers in public, even when we lived in the very small town in Michigan.  Let me tell you, if I did spot one of her teachers in public during a meltdown, I’d be all “OMG LOOK, it’s Miss So and So!” to try to break the spell of the tantrum.  And knowing Maura’s teachers in the past, and even now, most would probably be over there in a heartbeat to help out.  Because they’ve all been fabulous like that.  So teachers, aides, therapists – you have my permission to help run interference if you see a student out with their parent giving their parent a hard time.  The parent may just hug you for it.

Making sure there’s no abuse happening.

This one kind of bothered me.  That for some reason, my child may be screaming because of abuse.  It also makes my life even more stressful because I know those types are out there, judging my every action, seeing if I’m abusing the poor screaming child.  So I have to be cautious about every move I make because there are so many levels of what people consider abuse.  Me holding her by the upper arm as I walk her out of the mall may seem abusive to someone else, even though I’m holding her like that to A) make sure she doesn’t dart off out the door and possibly into traffic and B) because my oldest child had Nursemaid’s Elbow so if you held him by the hand and he tried to yank away, he’d actually pull his elbow out of the socket.  We found this out one time at church.  And another time at a McDonald’s ball pit.  Luckily, he outgrew it.  Our the pediatrician suggested the upper arm hold verses holding the hand when escorting children, and seeing as Maura’s joints are a bit hyperflexible, I am not taking chances.

But to someone else, it might look like “rough handling”.

I also feel like I can’t speak loudly to Maura.  I’m not allowed to show anger to her in public.  I can’t speak loudly so she can hear me over her screaming.  In many ways, I feel like I’m not able to parent her in ways I was able to parent my other children.  Because once people figure out that she’s different, then it becomes “Why is that horrible woman yelling at that poor child?”  Um, because that poor child is being a brat and can’t hear my soothing tones so I have to be louder?

And she’s actually aware enough to get when I’m angry or upset because she’s done something wrong.  And that’s okay for her to experience that.   How else is she going to learn that some things aren’t acceptable to do?  By me smiling and going “Now sweetie, that’s a big no-no.”?

I will promise you, that if you witness Maura in the midst of a full meltdown, I am no longer focusing on whatever caused the meltdown.  At that point, I know that we’re living in the moment, and that moment needs to be diffused.  I will use stern tones to let her know the behavior is not acceptable, use words like “naughty” about her behavior because she understands that, and will use short sentences so she can easily process what I’m saying like “This is NOT a choice!”  I usually won’t be smiling, because smiling will either make her angrier, or make her think she can get away with what she’s doing.  I have to have the stern face, the stern voice, the stern attitude.  But stern doesn’t even mean I’m mad, or angry, or about to go ballistic on the girl.

Do you know what will cause my temper to start rising however?

People staring at us.

People watching my every move in case I’m about to become horribly abusive in public.

Which is why I’ve learned to put on blinders.

It’s a very strange position to be in – I block you all out, yet I am hyperaware that we’re being watched, being judged.  I know you’re there, I’ll meet your eye.  I have no shame because I am doing nothing wrong.

What is funny to me is after that last big meltdown at the mall, my friend met us outside, Maura had calmed down, and I joked “Well, another successful shopping trip where we didn’t get the cops called on us for abuse.”

I live our life knowing that there could be a day when some well-meaning stranger does call the police or security on us because of a meltdown.  Because it happens all the time in our world.

In the meantime, I will still take Maura places, because that’s how she’ll learn to behave in public.  She can’t learn if I keep her hidden at home, away from all the stares.

 

 

Staring

8 Aug

Picture this -

A tall girl, who is obviously old enough to know not to behave like this, is screaming like a banshee in a shopping center. She chucks her book and her purse and squats down on the ground.  Her mother picks up the book and purse, hefts the howling girl who is almost as tall as her off the floor, and leads her to a seat.  She then gets eye level to the screaming girl, telling her things like “eyes here” and “use your words”.

The mother never loses her cool, and sometimes even cracks a smile as the girl gets caught up in her hissy fit.  Finally the mother takes her by the hand and marches her out the mall doors, as the girl is still howling, sitting her on a bench just outside in a “time out”, while telling her that she’s being “very naughty” and needs to stop screaming.

There is no abuse happening.  The mother doesn’t lose her temper, isn’t mean to the child.  Just firmly trying to take control of the situation.

And while she’s trying to calm her child down, she meets your eyes.  Your wide, unblinking eyes that are staring at her, your mouth slightly gaped open, or maybe a slight frown on your face as your steps slow down so you can fully take in this apparently unbelievable sight you must gaze at.  If the child was small, toddler or preschooler sized, you wouldn’t be staring.  You would just keep moving, maybe smile in solidarity of “been there, done that”, or shake your head with “When I have kids…” or “That’s why I’m never having kids.”

But it’s different when it’s an almost five foot tall child howling and screaming.

It’s a sight you just can’t tear your adult eyes away from.

You must stare.

You stare at the child.  Then you stare at the mother.  The mother meets your stare with her own steely unblinking stare, daring you to say something.  Waiting for you to look away.

Yet you keep staring.  You keep eye contact with the mother until finally, you blink first and look away.  Keep walking.

But of course, you have to look back a couple more times at the mother and screaming tween-aged child.

You can’t help it.

Except you can.

You are the adult.  You’re the one in control of your actions.  Not the screaming child.  You, the intelligent adult who choses to stare at the upset special needs child who is still learning to express herself, and only knows how to express unhappiness or frustration by screaming.  You choose to stare at her while she’s highly visibly upset, gaping at her, frowning at me, confused by the whole situation.

Does your staring at us help the situation?  No.

Does it ever occur to you that she might have special needs?  I have no idea.  None of you have asked.  If any of you asked even “Wow, what happened?”, I could give you a quick “She has special needs, she can’t always control her emotions.”  And then you’d be more enlightened.

But people don’t ask.  They just stare.

I deal with you staring, gaping, frowning rubberneckers of life every time I step outside with my child.  Every time Maura has a public meltdown, I not only have to quickly diffuse the situation with her before it gets out of control, but I must deal with your silent judgment, your stares, your rudeness, your wiliness to insert yourself into our situation with your gaze, but your obvious unwillingness to try to help or even understand what is going on.

So I stare back.  Even though I was taught by my elders that it is impolite to stare.  That it’s rude to gape at people.

Mostly though, I tend to ignore most of you.  It’s a trick I’ve learned.  When my child is in the midst of a complete and total meltdown, the world around me vanishes and it’s just Maura and me.  I will ignore everyone around us and deal with just her, to the point that I will just take her by the hand and march her out of the place we’re in.  See, taking her out of the situation helps calm her down.  I’m not taking her away from your prying eyes to abuse her without witnesses.  I’m taking her away from the visuals that are feeding her tantrum.  If you follow us, you’ll see me find a place for a “time out” – a seat, a bench, a low wall she can sit on – while I tell her sternly that “that is enough, you need to stop screaming”.  Not meanly, just sternly.  There is a difference.  And she will calm down, and there will be hugs, and I may actually laugh again because I can see the ridiculousness of the whole situation. And we shall move on.

Granted, when this all happens, I will also abandon people we’re with in my haste to get her out of whatever area we’re in – my husband and teens have learned to just catch up with me. My friend – who was with us this particular day when Maura threw a screaming fit in the mall because she was, as it turns out, hungry and overwhelmed by choices at Old Navy and upset because I wouldn’t buy her just anything – did catch up with us.  She asked, for future reference, what she could do to help. Because she’s a real friend, she laughed when I told her this -

“Stare people down.  Give them the stink eye.  Wave the rubberneckers along, nothing to see here.”

 

No need to stare...really...

No need to stare…really…

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