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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It can be lonely, make your own village

17 Sep

One of the big pieces of advice all those “10 Tips for Special Needs Parents” always seems to give is “Join a support group”.

Which is all well and good if you can.

But to be frank, most support groups are labeled.  Down Syndrome Support Group.  Autism Moms.  Cerebral Palsy Parents. It’s hard to find a local “Ultra Rare, 1 in 100,000 Births Club” or “Generic Special Needs Support Group” out there, so there is a whole population of us out there wandering loose, uninformed, scrabbling for any sort of information on our rare or undiagnosed situation.

Yet those writing about special needs support swear that one thing to do is find a support group.  They talk about their Moms Nights Out, which include pictures of ladies with smiles and glasses of wine.  They show their walks and runs and how they light up the night for their cause, while we rare and undiagnosed sit in the dark, wine-less.

The most surprising thing for me was to find that many parents, as much as they want their child to be accepted and included, will exclude other parents for not having the right diagnosis.  “Sorry, this is our private club, you can’t join.”  I could see all the similarities we had as special needs parents.  They saw the differences.  We didn’t have the code word, there was no magic handshake, no sharing of information, no wine nights out.

If you’re there, cast off in the cold, I’m here to tell you – feck ‘em.  Make your own damn village.

Support doesn’t have to come with a label.  It doesn’t even have to come with shared experiences.  What I’ve learned is that it just needs to have caring and interest, ears to listen and shoulders to lean on.  Some of my most supportive people in my life don’t have a child with special needs.  Some who have rejected us do have children with special needs.  Life is funny that way.

When I realized that not having a diagnosis excluded me from all the local support groups, well, I was annoyed.  But when my husband went “You don’t even like them, why do you care if you’re friends just because of your kids?”, I thought “Wow, he’s right.  Eff them. I’m fabulous and they should want to be my friend.”

(Yes, all that ego-boosting therapy DID pay off!)

Over time, I learned that support came in all forms.  It came from friends I met at the coffee shop in the mornings.  It came from those friends I made in college, who let me ramble and sometimes even get bitter with them.  It came in the form of fabulous therapists and teachers and school staff who proved that helping Maura was the first priority, who showed love for my child, and made otherwise unbearable situations bearable. It came from family who accepted Maura instantly as just another part of the clan, equal to the rest of us.  It came from my older children, when they showed concern for their sister when she was sick, and annoyance with her when she was being a bratty little sister.  It came from my husband, who was in this 100% with me.  It came from strangers online, who did understand what I was going through. It came from my older kids friends, random teens who walk into my house and accept Maura for who she is, and let her join in.  And eventually, it even came from other special needs parents, those more open-minded fun ones who could see all the similarities we went through despite our different labels.

I still don’t have a labeled support group.  But what I have is a great group of people around me, and it is enough.  My village is fantastic one, full of clowns and fools and people who get me. It’s all good.  Because at the end of the day, well, I am usually too tired to cry anyway, and would much rather laugh over things.  Or talk about anything else but special needs and instead discuss addictions to Pinterest or Doctor Who or books.  Most of all though, my village is very doesn’t need a code word or label to enter it.

My village is varied, just like my life.  My support group is wine with friends, internet groups, and old college roommates.  I may not have a labeled group to help raise awareness and do fundraisers with, but I have people ready to loan me an ear and hand me a glass of wine.  And at the end of the day, that’s what I really need.

 

 

 

 

Flashback Friday – Erasure #fbf

12 Sep

As I did my suburban mom Target run last night in search for a Thermos container for Maura’s lunch of choice, organic mac and cheese (a sentence solidifying my suburban  mom status) – this song came on the radio.

 

So yes, I sat in my car to sing along with Erasure.

And posted this fact on Facebook.

And had three Jennifers reply in similar tones of excitement.

Erasure takes me back to the early years of college, being at Friday night dances in the student union, whipping my hair around.  Which probably explains my need for a chiropractor now.  But I was young, and out in the world for the first time, and had managed to find a great group of friends, most named Jennifer, all equally quirky and fun, and we laughed too loud and danced too well for the more conservative people on campus.

Me at 18.  I loved that outfit.

Me at 18. I loved that outfit.

We use to talk about the weather, making plans together, days would last forever…

 

I left for college at 17, young and worldly, being a girl from Chicago (well, practically Chicago).  I was all shades of young and optimistic and safety conscious.  I had a strange wardrobe that included a bit of retro throwback dresses, flannel shirts, and one kick-ask little denim mini skirt.  I did not have cool purple velvet shoes like my roommate.  I still envy those purple velvet shoes.  I did end up with a pair of fake Doc Martens that I got for five dollars at Gabe’s. Ah Gabe’s – where everything was name brand, cast off seconds, or had a hole in it.  Seriously, I had a shirt with the word “seconds” stamped inside of it.  Didn’t matter – it was awesome, name brand, and under $5.

I can see that girl I was so clearly, all the insecurity, the tiny waistline, the red lipstick, working custodial to earn cash, carrying her shampoo and soap to the bathroom in a McDonald’s happy meal bucket she swiped off little siblings.  And I can still see her in me, especially when I look at my collection of red lipstick that I don’t wear enough of.  I miss the tiny waistline.  But that girl I was, with all her big dreams, had no clue what was in store for her.  Even with my imagination, I couldn’t have imagined life would take me in so many directions.  The summer I was 20, I had given up on men and decided I’d live in a loft in Chicago with a cat and work for a publishing company as I wrote my first novel.

Six months later I was engaged.

Why yes, we were theatre people, why do you ask?

Why yes, we were theatre people, why do you ask?

 

Twenty years later, and here I am, singing along to Erasure, still wearing Doc Martens (only I can afford a real pair now) and red lipstick, and still have a ton of friends named Jennifer.  Because I met them all in college, and we danced along to Erasure on Friday nights in the student center.  Sure, maybe it was just our little group dancing, but we danced, and were carefree for a little bit.  I may have danced on one of the coffee tables in the student union, and may have gotten chastised by the night manager for dancing on said table, and may have said in reply “Hey, I clean these tables, I can dance on them!”

Such a rebel I was!

So today, I shall listen to some Erasure and salute that little college gal that I was, who doesn’t always seem that far away when the music starts playing…

 

 

 

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