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I have to make a teal pumpkin

22 Oct

A couple weeks ago, a friend of mine posted about how she cried when kid-safe candy was found for her kids.  Another day on Facebook, a friend dealing with a very rare disorder shared the fears and frustrations of raising kids on a limited diet.  I remember when another friend’s son had his first anaphylactic reaction to peanut butter (the first time he tried it).

Needless to say, Halloween is a holiday that causes a bit of a panic attack to moms like them.  Moms who have to spend hours researching foods online, reading labels in stores, food prepping in the kitchen.

We’ve always been lucky in the food department.  Maura has no allergies, no food limitations, no food aversions.  She can eat whatever she want…well…that’s edible.  She enjoys a wide variety of foods, loves fresh fruit and eats her veggies happily.  I can place a full bag of candy in front of her and not have to pick through to weed out something that she might react badly too.

I am aware of how lucky we are, and aware that not everyone is in our shoes.

I will also admit, when I heard about The Teal Pumpkin Project, my first thought was “well dang, where am I supposed to find a teal pumpkin?”.  There was a moment of “I don’t want to have to do yet another extra thing…” in my head.  Which immediately left as soon as I went to buy Halloween candy.  I found myself doing my usual selection of variety packs of fun sized stuff, making sure there were plenty of nut-free options.  Then I started looking for non-food variety packs.  Because despite that momentary feeling of “not one more thing to do” that I had about finding a teal pumpkin, I knew that teal pumpkin or not, I could still have non-food selections.  Which I found in a huge pack of glow bracelets and necklaces (thank you Target).

Then I realized that I’m just going to have to have a teal pumpkin.  I can’t not do it.  Not when a friend on Facebook posts a link to the project with “Please do this!”.  Not when I’ve watched friends spend their kids childhoods making sure they eat safe foods.

So I’m going to make a teal pumpkin..  It’s going to be awesome.  My plan is to find a fake white pumpkin, paint it teal, then coat it in fabulous teal glitter so that sucker shines out into the night.

Because every kid should be able to enjoy Halloween.

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IEP Season

14 Oct

Maura’s IEP is coming up.  At the sight of those letters – short for Individualized Education Program - every parent of a child with an IEP just shuddered.

So the idea that I’m here, going “Eh” over the IEP, is amazing, even to me.

Back in Michigan, we had to fight for everything for Maura.  Not just us as parents, but some of those working with her had to fight to make sure she got what she needed, what she actually needed.  Not just what the barest of minimums forced them to give.  I went into every IEP knowing how so many people had our backs, were going to make sure Maura had as much as they could give her, and I appreciated every one of them for working with us, and for Maura.

But it was draining.  And disheartening.  I cried – and I never cry at stuff.  IEPs made me cry.  I had to make sure I did my homework, had The Binder with all of Maura’s stuff in it, I would contact people by email, then print out every email conversation and put it in the binder.  I had a book to guide me through the legalities of the IEP.  I talked to people, to outside therapists and other parents, to find out what they thought Maura would need, what their kids were getting, what worked for them.  Then, when the day of the IEP came, I’d arrange for babysitting, because I knew I’d be there for hours.  Seriously.  Four hours once, with fourteen people. They never had a conference room big enough for Maura’s IEPs.

Why so long and so many?  Because at the time, the school didn’t have children with special needs, not like Maura’s.  It was her and one other student her age with the same levels of disabilities, and they weren’t sure what to do with them.  We were the proverbial guinea pigs the entire time we were in Michigan – for the new special ed preschool program, for the new resource room in the elementary school they had to create to handle a child like Maura, for inclusion to this degree.  It was a bit scary, I can admit that.

So four hour IEPs that left me feeling unsure became the norm.  Battles with the special ed director became the norm.  Ranting about the special ed director (who at one point told me my signature wasn’t necessary for the IEP) became too much of a norm.

To sit here, four years later, and have an IEP looming and the thought of it doesn’t make me want to drink?  That is still a gift I can’t get over.  I cherish the idea that I don’t have to worry and wind myself up and gird loins for battle.  I love the idea that an IEP doesn’t have to mean instant crazy-making.  I could hug each member of our current IEP team who make all this non-craziness possible.  I wish that every parent could have this good of an experience.  And I will never take it for granted, because I know that this could all change.  I could go back to the old ways, the tension and the tears and the loins girded for battle.

I’d rather not though.  I’d rather keep our new nice IEP ways.

Oh, I’ll have notes.  Suggestions as to how to help Maura grow and mature.  Questions as to why she’s being such a pill at school (go figure, she’s an angel at home!).  Questions about her future in this program (which I’m not doubting, she’s earned her place in the life skills program, just that she’ll be transitioning to middle school next year.)  And a couple apologies for being a slacker parent this year (though in my defense, I never even saw the paperwork sent home the other day, just the mangled note saying “Please send completed forms back…” – Maura beat me to her folder and took care of the forms for me.  Oops.)

The IEP will be a meeting as to how we can all help Maura grow.  As it should be.  And I am thankful for it, and this program Maura’s in, every single day. Because I know it could be worse.  I have been there.  And I never want to go back.

 

I’d wave a white flag, but someone colored on it…

18 Sep

I’d like to give up.

I can’t.

But I’d like to.

The past couple of months have been one long example of Maura’s budding need for independence, yet her inability to distinguish what’s dangerous or off-limits, and what’s not.

Like the time I walked into the kitchen to find her standing over the watermelon with the biggest knife she could find, ready to cut it.  Because she’s into learning how to cut her own food.  So yes, of course in her mind, she can easily transition from butter knife to butcher knife.

<sprouts grey hair instantly>

Or the time I came home from taking a teen somewhere, to find the eldest explaining to me how Maura decided to pour herself a glass of white wine.  In a wine glass.  Because she was into using the wine glasses, and hey, that’s what Mom puts in her wine glasses!  The eldest saw her walk by with the full sparkling glass and on instinct, checked it out.  Thank goodness. Maura was not impressed with his brotherly actions.

Part of me was a bit impressed she used the right glass. Another part of me was territorial – that is my wine kid!  Yet another part had to laugh at this new irony in my life, that I can trust the teens with the liquor, but not the little girl.

All the wine has been moved.

Maura's idea of a "tea party" one day

Maura’s idea of a “tea party” one day

 

As did all the beers, when she decided a few days later she wanted a hard lemonade that was in the fridge – again, while I was taking a sibling someplace, and again, caught by the eldest sibling, who again, took it from her.

*sigh*

She also thinks she can use the microwave.  Luckily, she hasn’t figured out that she’s supposed to push buttons yet, and I can hear the clattering before she has time to push any buttons.

Still…

*yipes*

Then yesterday.  Yesterday as she played outside with her dolls.  Happy sounds of dolls on adventures.  Her enjoying fresh air as I kept one eye and one ear on her.  Our yard is pretty safe, my biggest worries have been if she decides to swing off a tree branch yet again, or trips on the steps down to the patio.

My mistake was going to the bathroom.  No, I’ve never learned that lesson.  I came out to a teen hosing down the grill because somehow Maura turned on the side burner and pine needles that had gotten caught under the lid (which was still closed) were smoldering.

<spots more grey hairs>

I can actually imagine what other people must be thinking, that somehow, I must not watch her enough.  Or my house isn’t babyproofed enough.  That I need to work harder to keep her safe.

I understand.  I get that.  I do try. But at this rate, to keep the girl completely safe, I’d have to contain her to one room of the house – which, let’s face it, would be a bit of imprisonment, and is frowned upon in these states.

I could just hover around her at all times, but then I’d turn into a news story, and people would talk about how I should have asked for help before snapping.

I could ask for help….and I do have help in the form of the other siblings, my husband, and friends. But we all have to use the toilet at some point.  Or leave to buy groceries.  Or take care of other people in the house.  Or – if I may be so bold – take care of ourselves.

I could take her everywhere with me.  But again, there’s that news story potential.  “Local mom found sitting in wine aisle, rocking a bottle, as her special needs daughter sat next to her, eating a bag of chips.”

I could work very hard to make the house very Maura proof.  We could all learn how to eat raw food with spoons, get rid of any sharp objects, the stove, the microwave, scissors, any sort of sharp object, all liquor, medicines, household cleaners, and any other thing she could ingest – oh, and paper.  Because she stuck paper in her ear last week as well. We’d have to go very minimalist to rid the house of every potential “danger”.

But the catch is, I don’t want to do all that.  I want to keep her safe, but I want to be able to let her be more independent as well.  I could park her in front of the tv for hours – she’d be good with that – but I want her to go outside and play and use that adorable imagination of hers. I want to be able to use the toilet without worry, but I also want my family to live as normalish of a life as possible.

I could put her in a proverbial bubble, but I want her to mature and learn about the world around her.  Maybe not to the point that she’s stealing my wine, but to the point that she can be trusted.  That she understands limits and dangers.  If we’re going to hang out together, forever, she needs to learn these things.  I just need to learn how to let her learn these things without harming herself.  Knock on wood, we’ve been pretty lucky so far.

So no easy answers here.  We just keep going along, doing the best we can, all working hard to keep an eye on Maura and teach her what is and is not safe, just like you would a three year old.  And she is capable of learning, she does understand.  She hasn’t tried to cut open the watermelon, and has learned that wine glasses are good for apple juice and lemonade.  The grill incident?  I don’t even think she meant to turn the knob – I think it was a case of her dolly sliding down the grill and hitting the knob.  So it’s just another time to talk to her about how that’s not a choice for playing with dolls on.  She will understand.

Meanwhile, I have now shown the reason behind my coffee addiction.  I need my wits about me at all times to keep up with this child as she learns!

I love you too coffee!

I love you too coffee!

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