behavior

A New Freedom

The past couple weeks have flown by.  We’ve been immersed in a flurry of assessments and activities for Vista.

She started preschool this week, with her aide, Lynda.  It went better than everyone thought it would.  Lynda has been a huge help in managing her tantrums and heading them off before they begin.  She’s been able to very quickly pick up Vista’s cues that she’s getting overwhelmed.

And for the first time, yesterday, Vista was able to tell another kid at her therapy group “No. Stop.  I’m playing with that toy,” rather than dissolving into an instant puddle of hysterics. It’s something so small, but such a huge thing in V’s world for her to be able to do that.

I’ve also discovered that when you’re trying to dress a kicking, screaming, squirming, crying child who is refusing to leave an activity, it’s MUCH easier with another set of hands.

Having Vista’s aide has been such a huge stress release, I can’t even begin to describe it. Even the ability to go out and do things with V in the community has been huge.  It’s a freedom we’ve never experienced before.

We also received Vista’s IPP (Individual Program Plan) today.  This is a document where each of her therapists lay out the specific, measurable goals for Vista over the next few months and how we’re going to achieve them.  It also gives her aide a framework of things to be working on with Vista in the classroom and out in the community.

In addition to her aide, V will be working with a physical therapist, an occupational therapist,  a behavior consultant, and a learning support teacher.  They’re also going to be adding a speech therapist into that mix, as well.

It means our days are booked solid.

But?

It’s so worth it.  We’re already starting to see small improvements in her behavior.

The fact that I’m not so stressed and butting heads with her all the time, also means the quality of my relationship with my daughter has improved dramatically.

And that makes us both happy.

Holding Pattern

Warning: This is a boring Vista medical/health update and also a bit of a novel. If you’re not interested, you should go check out @Psychmamma’s pretty snow pictures instead icon smile Holding Pattern

Sooooo… yeah.  Way back in November I wrote about how Vista hadn’t been doing well.  I originally suspected her sudden weight loss, rash, lack of appetite, etc were due to the new anti-seizure meds she started at the end of October.  Of course, being just a mom, I was pooh-poohed, and told it was just viral.  I wasn’t convinced.

I really wouldn’t have fussed it too much, had it not been for the 10lb weight loss (which left her looking frail), and the fact she stopped having bowel movements altogether.

I finally took her into our family doc, who is awesome.  We decided to rule out EVERYTHING it could be, until the only option was the meds.  He ordered abdominal xrays checking for a blockage or obstruction, as well as a blood panel checking for diabetes, cancer, thyroid, you name it.  These all came back normal.  All of them.

It was time to call her neurology team and tell them she was still not well.  Every other possible explanation had been ruled out, and, as it was right before Christmas, I wasn’t buying a virus that had lasted two months, especially when all her blood counts had come back normal.

They agreed, and we decided to keep her on her meds over Christmas and bring her in early January to discuss options. Then the nurse mentioned that perhaps we could try splitting her med dose.  She didn’t think it would make a difference, but it would be something else to try until we went in to see them.

So, rather than the full dose in the evening, she now gets half in the morning and half at night.  And guess what?  Rash? Gone.  Bowel movements?  Returned.  Weight loss?  Stopped.  *poof*  All her symptoms magically disappeared.

We’re still not sure why she was reacting so badly to the full dose (she is still solid in her status as the ‘little anomaly’) but we’re just happy to have it figured out.  For now, we’ll leave things like this as they seem to be working.

Our project now is to get her to put some of her weight back on.   At 38lbs and almost 3’6″, she’s too slim for her big frame.

The other thing we had going on during this, is the first part of her pre-surgical testing (in preparation for the possible eventuality of brain surgery for her epilepsy).  This was a neuropsych evaluation that tested her IQ, cognitive abilities, and other brain functions.  We got the results right before Christmas, and the results were… interesting.

She has problems with impulse control (so telling her not to do something can actually make her do it.  Doh!) and executive brain functions (these are to do with planning, abstract thinking, troubleshooting, stuff like that).  These are consistent with her abnormal EEG and the spiking they saw in the back of her brain.

So, what does this mean?  Essentially, that V could be a danger to herself.  She can’t stop herself from touching a hot stove if her brain decides to do it.  It means, as we already knew, she requires constant supervision.  It also means that we’ll need to change some of the ways we parent her, because they’re not working and they’re not ever going to work.

The neuropsych team has written a recommendation that V have a behavioral aide with her, so I will be putting all the papers together tonight to get the application in place for that.  That will take some of the stress off us, I think.

They also recommended further testing.  When she’s older they would like her to have a MRI neuropsych eval, that would fully map her brain functions.   The next step, as far as the surgery goes, though, is a 5 day hospital stay, with her hooked up to an EEG machine and video monitored, while we pull her off her meds and hope she seizures.  Yay.  There’s no date set for this test, yet, and I’m, quite frankly, in no hurry to do it.

For now we’re in a holding pattern.  As long as her meds keep working for her, and we have no more adverse reactions, we’ll keep things as they are.  And keep our fingers crossed.

Where’s The Line?

Mama bear instinct. Most mothers have it. That need to protect, not only our own children, but any child we see being neglected or abused.

I used to be very vocal in my judgment of parents who weren’t, in my view, perfect.

That, of course, would be before I had a child with special needs.

And let me digress for a moment and say something about those two words ‘special needs’. I’ve always hesitated to use them in regard to Vista. Outwardly she appears normal. Most people passing her on the street would never guess she’s anything but. She looks just like your kid, and your kid, and yours. Only she’s not.

Did you spend an hour this morning laying in bed with your child, not cuddling them, but restraining them while they shrieked and screamed and fought to get their hands free so they could punch and hit and attack you, as you softly talked and sang to them, trying to refocus their attention and calm them down? No? I did. But you’d never know that to look at my daughter, happily playing an hour later, while I still struggled to suppress the anger and frustration I felt over the incident. That was before 7am this morning. And that is not an unusual way to start or end my days. But, she looks normal.

And that exasperation may have come through as I snapped at her as she dawdled to the truck, fiddling with her umbrella in the rain, this morning. “I’m wet, you’re wet, group starts in 10 minutes… LET’S GO!”

But all you would have seen is me snap at her. And I’m sure the words “What a bitch” would have flitted through your mind as you walk past and felt sorry for my daughter at having such a horrible mother. You wouldn’t have noticed the long sleeve shirt and jeans I was wearing to cover the bruises left from her lashing out yet again. Nor would you have noticed the cap I was wearing to hide the fact the hour spent restraining her had used up the spare moments I might have had to grab a shower or even actually run a brush through my hair.

And yet, there you would have stood in judgment because that mama bear instinct is to protect the child…not the parent.

That’s why I struggle when I read posts like this one that Janna at The Adventure of Motherhood wrote on the BlogHer site.

I don’t condone the actions of the parent.  Did she cross over that invisible line of what is acceptable in private, never mind public?  Yes, probably.

But consider this, if you will.  Every mother out there has had one of those days where they’re at their wits end with their children.  Where they just want to escape and can’t handle one more second of the whining/fighting/arguing/tantrums/crying/insert your child’s favorite button-pushing behavior here.  Now imagine having those days EVERY DAY FOR MONTHS ON END.  That can be what having a special need child is like sometimes.  At some point, if you don’t have the supports in place to help you deal with this sort of stuff (like I’m lucky that we do), you will lose it.  And sometimes that happens in public.

I’m not saying the child in this story Janna wrote about was special needs.  I don’t know.  I have no idea what issues the mother might be dealing with.  Because Janna’s instinct was to protect the child and say “I can do this better”.

Rather than approach the mom with an accusatory sentence of “I don’t think you should talk that way to your son,”  as most of us (myself included) instinctually would, why not go up and say “Is there anything I can do to help you?”

Find out what is going on that has brought them to the point that they have completely lost it in public.

And they may not want your help, and there may be nothing you can do.

But never think you can do it better until you know what’s really going on and have walked a mile in their shoes.

We are so quick to judge and hate each other.  Would it be so bad to hold out a hand instead and say “I understand.  Let me help”?

The Next WWE Diva

I’ve always held this theory about kids.  The cuter they are, the more evil they turn out to be.  So far my darling Vista isn’t turning out to be an exception to this rule.  Extra cute, with a side of exceedingly spoiled, add a dash of attitude, a splash of stubbornness, with a midline brain defect for good measure, and you have a recipe for disaster.

I’m currently sporting the latest look in forehead bumps after she headbutted me while I was taking her out of the bathtub. Yes, it was a calculated move on her part.  Yes, it hurt.  Yes, I’m a big pansy. What of it?

Bil and I have been struggling for a couple months with how to control these outbursts.  She will be cuddling with you and then suddenly hit you.  She bites when she gets frustrated (that one we nipped in the bud as soon as it cropped up, so now we’re only dealing with her biting things and not people).  If you try to stop her from hitting, or throwing things, it only amplifies the outbursts.

wwe The Next WWE DivaPart of this I know is just her being two years old (thank you terrible twos) and coming from two very stubborn, opinionated, independent parents (damn you genetics!).  The other part of this, we suspect, is coming from her malformed corpus callosum.  We suspect she may have face processing difficulties, which means when you make the ‘mad face’ she doesn’t recognize it as such and smiles and hits you again. At this rate we’ll have the next WWE Diva on our hands in no time (really, is two years old too early to train wrestling moves?)

We’ve tried various methods of dealing with this.  Time outs, restraining, teaching alternatives (“don’t hit, pat nice” which has been semi effective)… you name it.  Nothing seems to be really, truly working.  We’re getting frustrated, she’s getting frustrated.  It’s not a good situation.

So, this is where we turn to the experts (ahh… that would be you, dear internet).

How do I say this?  HAAAAAAALLLLLPPP!  *ahem* Which translated means:  What the hell worked for your kids and what are we doing wrong?

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