Vista

Chee-Yos

Me: “Vista, what do you want for breakfast?”

V: “Uhhhhh…..Fishy crackers!”

Me: “Hrmmm, yeah, no.  That’s not a breakfast food.  How about some Multi-grain Cheerios instead?”

V: “OK muddy-gain-chee-yos.”

Me: “No.  Mul-tee-gr-… Oh never mind…”

*hands her a bowl of Cheerios*

V: “Mmmmmm….deeeeelicious!  Fresh from the garden!”

Me: “Ummmmm…. *sigh* … Yup mommy picked them special for you”

+++++++++++++++++++++

There are some explanations I can’t get into with her before my morning cup of coffee.  The fact that ‘chee-yos’ don’t grow on trees would be one of those.

 Chee Yos

It’s Her World. We Just Live In It.

Sometimes I look at Vista and there’s this sense of awe and amazement that this little child is mine.

But as each day passes, she’s less ‘mine’ and more her own person.

Sometimes I have to remind myself to step back and remember that the way she reacts to things isn’t necessarily going to be the same way I react to things.

She has her own way of doing things.  And is definite about how her world is structured.

As time goes on, we realize more and more, that she’s not fitting into our world but molding us into what she needs her world to be.

And that’s not without it’s challenges sometimes.

One of our biggest frustrations has been around asking her to do simple things.  Every day tasks.  Using words she knows. And yet there seems to be no comprehension.

We assumed it was her three year old self being, well, a three year old.  Defiant.  Willful.  All the things a child that age can tend towards.

Until we did one of a speech and language assessment with her a few weeks ago.

Her verbal scores came back as expected.   She’s progressing wonderfully in her talking and ability to communicate.

Her receptive scores, those that indicate her ability to take in and process what we’re saying, were a surprise.

Despite the fact she knows the words, the meaning doesn’t always translate when you speak with her.

So when we we’re frustrated over her seeming lack of comprehension, it’s because… yeah… she really doesn’t understand.

Complete *headdesk* moment.

A neuropathway issue.  Apparently it’s not all together uncommon in kids with her types of brain malformations.

But now we know.  And that means we can start focusing on trying to rewire those pathways.  Because a childs brain is an amazing, changing, thing.

She may not understand us, but we’re slowly learning to understand her better.  And changing the way we do things to help her be who we know she can be.

We’ve started adding back in some signing, to see if visual cues help with the comprehension.  But beyond that, we don’t have a lot to go on.

So I’m turning to my brilliant blogging / twitter friends.

Suggestions on what you would do?  What you’ve seen work? What you think we could try?

Steady As She Goes

Friends and family who live out of town have been asking for a Vista update.  So if you’re not in the mood for medical drivel skip over here where Kim is asking the craziest place you ever had a quickie.  Oh come on.  You know you want to share…

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Even though I haven’t been blogging and tweeting much about it, Vista has continued to seizure despite the meds she’s on.  She did really well on her first med, Clobazam, until a growth spurt rendered it useless.  She was on the highest dose do the decision was made to add a second drug, Trileptal.

After the Neuro prescribed the second med, they also decided they wanted to see her in office and reassess.  They’re very concerned at the amount of regression and behavior changes we’re seeing in her after her seizures.  So, getting her seizures under control has become priority #1 in her medical regime.

At that visit we also got V’s latest diagnosis:  Symptomatic Partial Epilepsy

Not a huge shock, since she’s been seizuirning for 3yrs.  What it means is she’ll have to go 2yrs seizure free on meds before they’ll try to wean her off of them to see if she might have grown out of the seizures at some point.

Unfortunately we haven’t made it two weeks yet.

V hasn’t done really well on the Trileptal.  The higher doses make her really irritable and the lower doses still aren’t controlling the seizures.

So, they’ve now added in a third med called Valproic Acid.  She’s only been on it a few days, so only time will tell how this one works.  We’re keeping our fingers crossed that third time is a charm.

The down side about the Valproic Acid is that she’ll need her levels checked.  This means the blood tests.  But really, if it controls the seizures, it’s worth a few needle sticks.

On the upside, since her last growth spurt she seems to have mostly outgrown her dairy allergy.  Yay!  Pizza and ice cream for everyone!  We still have to watch how much dairy she eats (too much will upset her tummy a bit), but all the severe symptoms are gone.

All and all, she’s doing not too bad.  She’s growing like a weed (my 3yr old is wearing size 6/7 shirts!), loving summer sun, and content knowing she’s an adored princess.

Vatherbday Steady As She Goes

Neuro, meds, therapy *head explodes*

I can definitely say it is never a dull moment around here.

I can also say I should have never written about how good things were going, because I obviously jinxed them.

First of all, thank you all so much for all your input on the preschool situation. I was surprised by how many of you with special needs kids have decided to homeschool them.  We’ve decided, for now, to keep Vista home in the fall.  This week has proven that preschool would not be a good option for her right now.

Her seizures a week ago have really changed everything.

We had our second session with Vista’s occupational and physiotherapists today at the Children’s Hospital, since her seizures.  She hasn’t had another seizure since we upped her meds, which is great.  Unfortunately, todays therapy session showed regression in her balance and motor skills, as well as behaviour issues.  Even more than last week.  Which is very concerning.  Why is she continuing to skill regress with no further seizures?

After half an hour trying to work with her, her therapists stopped the session and asked me to call her neurologist.  As a parent, when that happens, it doesn’t give you warm fuzzy feelings.

I put in a call to her neurologists office right away and then waited.

The call back didn’t take long.  I’ve discovered when the word ‘regression’ is involved, it never does.

Turns out, it’s not just the therapists who are concerned.

Her neruo is ordering a med change.  This means slowly weaning her off her current meds (goodbye sweet valium chocolates…*sniff*.  I shall miss you), and slowly adding in a new med.  I’m still waiting to hear what that new med is going to be.

And we get to make a trip to the neurologists office.  He’s not happy with the way things are going right now and wants to talk to us and evaluate her. So, tomorrow we’ll find out when that appointment will be.

While I’m happy that things are being done and they’re taking this seriously, the whole thing has throwing Bil and I into a bit of a tizzy.

We were comfortable in the knowledge that the clobazam was working for her and had stopped her seizures and regression.  Now that it’s not, it’s left us on tenuous ground as far as what the future holds for her.  I know we can only take it one day at a time, but when it’s your child who is dealing with all this, that’s a crappy solution.

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And since I’m sick of being all ‘woe is us’, why don’t you head over to the BlogHer@Home site.

We’re giving away, hot off the press, Aidan Donnelley Rowley’s brand new novel Life After Yes!!

You’re definitely going to want it on your summer reading list, so you may as well win a copy, right?

The contest is open to everyone (American, Canadian, Martian, BlogHer attendees, those partying with us at BlogHer@Home, those who have never heard of BlogHer).  All you have to do is leave a comment on this post.  So go…shoo… why are you still here??

Preschool, School, Homeschool… *headdesk*

150x106 Preschool, School, Homeschool... *headdesk*
Image by Getty Images via @daylife

I’m pretty sure Vista’s therapists think I’m a complete flake.

We’re having to make the dreaded preschool decision for this fall.

And when you have a special needs kid, it’s not as easy as just picking one and going.

First there’s finding a place that will take ‘early entry’ (take them when they’re three instead of four).

Then we have to find a place that takes kids who aren’t potty trained yet. And that little criteria pretty much eliminates every preschool in our area unless Vista has an aide. Which at this point isn’t a given.

So at this point we’ve put her name in at both school boards (public and catholic) in the off chance she does get an aide.

But now I’m sort of backpedaling. I’m not convinced that putting her in preschool this fall is the right thing for her after all. She’s going strictly for the socialization aspect, but are there better arenas for that?

This past week of seizures has really made me reconsider. How are other kids going to react to a child who acts one way for a month then has a few seizures and has a complete personality change? Aide or not, other kids don’t react well to that sort of lashing out.

And Vista’s birthday party on the weekend was another event that made me rethink this whole preschool decision.

There were about 10 kids there (ranging in age from 2 – 10). These were good kids. Well behaved kids. Kids who weren’t wild and screaming and acting like idiots. Kids with LOTS of parental supervision. Ten kids is a VERY small preschool class. Only one school, in a small town south of us offers a class of that size.

And Vista lasted one hour with 10 kids before the meltdowns started. Before the pouting defiance started. Before she was miserable and overwhelmed. To the point where we didn’t open presents at the party because it would have been too much for her.
To the point where she didn’t even eat a piece of the special no-cheese pizza we ordered for her or her birthday cupcake because she was so stressed.

She latched on to her BFF, Gracie, as soon as she arrived and wouldn’t let her out of her sight. But Gracie isn’t going to preschool next year. So who would be Vista’s anchor in the sea of toddler chaos?

As much as Vista needs the socialization and to learn how other kids her age play, how much is she really going to get out of it if she’s completely overwhelmed with the situation?

So maybe we’ll keep her at home for another year and let her be a kid for a bit longer.

And maybe we’ll throw schooling right out the window.

More and more people out here are moving to homeschooling, sick of the bullying that goes on, sick of the substandard education that’s provided as a result of over-worked and under-paid teachers.

And Vista with her follower copy-cat mentality, poor coordination, but bright mind would be a prime target for bullies. I know. I was too. It ruined my early school years. I don’t want my child going through that.

What a choice. Schooling, socialization, bullying, questionable education vs homeschooling, butting heads, and losing my sanity.

Which would you choose?

 Preschool, School, Homeschool... *headdesk*

Here We Are Again

It’s 11:30am and I just watched Vista crawl up on the couch in the living room and fall asleep.  I waited a few minutes then went over to her, gently picked her up and carried her to her bed and tucked her in.  She barely stirred as I walked with her down the hallway.

And now we wait for the chorus of “Oh man, your three year old naps?!?  You are so lucky!!”

But right now, I’m not feeling really lucky.

Because for us, that nap doesn’t mean she’s tired, that nap means her seizure meds aren’t working.

She had two seizures over the long weekend.  One on Sunday while she was out with her respite worker, Dorothy and her family.  Then, yesterday, we were over at her Dorothy’s house (as over the past year they’ve become very good friends of ours), and just before dinner she came and sat down next to us and had another seizure.

She seems to know when she’s going to have them as she always manages to be sitting down when she has one.  On Saturday, she crawled onto Dorothy’s lap, told her that her head hurt, then had her seizure.  I don’t know what her warning is… I suppose I won’t know until she’s older and understands enough that we can ask her to describe it.  But it does help calm the fear that one day she’ll have one while walking down a flight of stairs or something.

So here we are at today.  She slept for 14 hours last night after her seizure.  Which is how we confirm if it was a significant seizure or not.  Minor seizures don’t affect her.  But when she sleeps from 7pm to 9am (her normal sleep time is 9pm – 5am)…yeah, it tells me we have a problem.

And now she’s sleeping again after only being up for two hours.  Which means I probably missed a seizure while she was outside playing.  That’s three in three days.  And that?  Is not a good thing.

So here we are again.  Waiting for a call back from her neurologist and probably playing the medication game.

Part of me wants to sob in frustration.

Part of me is worried about the effects these seizures might have on her speech and motor skills again.

Part of me wants that magic cure, dammit. Something we can do so she’s not having to go through this anymore.

But mostly right now, I just want her neurologist to call back so I can find out what then next steps are to getting her well again.

1095 Days

Dear Vista,

I can’t believe it’s been three years already.

You’ve been through more in your three little years than some people go through in a lifetime.  And yet everyone always comments about how you still manage to smile through it all.

It’s such a special talent you have, that smile.  We can be anywhere, and you’ll find the grumpiest person and flash that special smile at them, and they can’t help but smile back at you.  You make the world a happier place.

I can’t even begin to tell you how proud I am of you.  It makes me glow inside to hear your doctors call you their ‘little anomaly’ as you do everything they say you shouldn’t be able to do.  Like walk.  And talk.  And never mind the fact that you already know your alphabet, numbers, and colors, and are trying to get us to teach you how to spell.  You soak up all the knowledge we give you and more.

I know this hasn’t been an easy road for you, but you’ve walked it with such grace for one so little.

I also know the road ahead is going to be filled with even greater challenges.  But remember, your daddy and I will always be there to walk it with you,  and to carry you when you get too tired.

You looked at me yesterday morning and asked “Can I be your baby?”  And I told you that you would always be my baby. My very special little baby, no matter how old you get.

I love you so much.

Happy 3rd Birthday, my little princess.

The One Where The Roll Of Toilet Paper Turns Into A Polar Bear

I’m not purposely ignoring my blog. I’ve been honestly busy. Not in a ‘woe is me, I shant have a moment to myself’ sort of way. More of a ‘GoDaddy hosting sucks balls and half the people I know have been hacked so I’ve been spending hours restoring blogs’ sort of way.

But there’s been lots of stuff going on that I want to write about.

Like we had Vista’s first appointment with the preschool treatment program at the Children’s hospital. And the team of specialists (OT, PT, Speech, Psychology) rock. I was seriously impressed. And that takes a lot. They get her and immediately zeroed in on her weak points and we’ll find out this week what their planned therapy strategy is going to be for the next couple months. This makes me oddly giddy to have a great group of people working with her.

And since we’ve had Vista on her anti-seizure meds, she’s been talking more and more. And the results of that? Freakin hilarious!

Conversations with Vista:

Vista: “My boobies are up here and mommy’s boobies are down there”

Me:  “uhhhh… did I seriously just get dissed by a two year old?”

Vista: “What happened to my leaf??

Me:  “I don’t know.  What?”  (having no idea what she’s talking about)

Vista: “It turned into a wolf.”  *big pout*

Me:  “…….”

Vista:  *pointing to a roll of toilet paper*  “POP-A-WEASEL!”  (aka ‘pop goes the weasel.  aka Vista’s version of abracadabra)

Me:  “…….”

Vista:  “There!  Now it’s a polar bear.”

Me:  “……”

Vista:  “Wahhhhhhhh wahhhhhhhh”  *fake crying*

Me:  *immitating her because I’m really mature like that*  “Wahhhhh wahhhhh”

Vista:  “No!  You can’t cry!!  I want to cry!!”

Me: “……”

Yeah, life is a barrel of laughs around here.  Because, really?  If you can’t laugh at yourself, who can you laugh at?

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”?

In A Good Place

While Vista napped this afternoon, I sat in my favorite chair in the living room, surrounded by a sea of scattered toys, jotting down updates and notes in her Care Notebook.

Next month will be her third birthday.

Three years of test results, assessments, letters from doctors, and all her Early Intervention visit records sit in this binder.

I have pages full of names and numbers for doctors, nurses, and therapists of all kinds. Lists of things to ask and review with her pediatrician at our appointment tomorrow.

It has been a hard fought battle to get where we are today.

But I finally feel like we are in a good place.

A place where we’re being heard.

A place where Vista is getting the support she needs.

When I noticed she woke up again with tremors, something she hasn’t had since starting her anti-seizure meds, I was able to place a phone call to her neurologists office, discuss it with them, and get her meds adjusted over the phone.

Thursday I’ll be attending a parent orientation session for a 9 week preschool child development treatment program that Vista’s been accepted into.  This will give us access to an Occupational Therapist, a Speech Language Pathologist, a Physiotherapist, a Child Psychologist, and a Social Worker, on a weekly basis.  These people will work with Vista and give her, and us, the tools we need to help Vista with some of her sensory and behaviour issues.

We’ll be working with this team and with Vista’s doctors to try and qualify for government funding so Vista can have an aide to help her at school.  She may qualify on a medical diagnosis because of her seizures, but that’s going to be a wait and see game.  I’m hoping it’ll go through, so she can go to preschool a few days a week in the fall.

And thanks to the wonderful people at the Calgary Cerebral Palsy Association, Vista now has a bike to ride this summer.  It’s wonderful to see her be able to do some of the peddling on her own as she squeals “Look at me, Mommy!  Look at me!”

I’m looking, baby girl, and I’m so proud of how far you’ve come.

V1 In A Good Place

V2 In A Good Place

V3 In A Good Place

V4 In A Good Place

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