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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.

 

 

 

 

Stress and worry and anxiety – or, you know, a normal day

11 Sep

I love Maura.  I love her dearly.  She has changed me in so many ways, good ways, happy ways, kick ass ways.

But as they say, magic always comes with a price.

The price for being Maura’s mom, besides all the fabulous kick ass stuff?  The not so pretty stuff.  Like the stress.  And the worry.  And the slightly screaming case of anxiety.

I’m pretty open about it all to friends, because I’m not ashamed of it.  Why be ashamed of it?  Living with Maura, dealing with her issues and all the nonsense that comes along with those issues is stressful.  I do worry about her.  And it all causes my natural tendency towards anxiety to sometimes spin out of control.

What, have I made this all look too much like a cakewalk?  Because I do that you know.  I put our best faces forward. I tell the jokes, and laugh at the nonsense, and do my best to ignore the stress and the anxiety and hide the worries.

Many moons ago, when I was in my pregnancy phase of life (aka my twenties), I spent a lot of time with baby blues.  I didn’t think it was post partum depression because there was so much more going on around my life to explain away feeling down.  And it wasn’t that bad, honestly.  But with Maura, I could see, even before giving birth, that I was dealing with something more.  After she was born, it didn’t get better, but it wasn’t awful either.  I told myself it was a mild case of PPD, and my husband was lovely and supportive and made sure I got out of the house when I needed a break.  And things seemed to get better.

Of course, the timing was off.  Because as the fog of PPD started to lift, we were informed that there might be something….off….with Maura.

And that’s when I hit depression like a brick wall.

I had spent so much of my time trying to keep my head above water, and then I was handed a sack of rocks to hold while treading the waters.  Yet most people didn’t notice.  I was still The Good Mom, taking kids to soccer practice and making sure they were clean and fed and loved.  No one saw that I had gone on auto-pilot.  I was going through motions while inside, a voice in my head screamed “There’s something wrong with the baby!  Fix her!” .

Several months or so after we were told that there might be something wrong with Maura, I looked up one day and realized I’d been ignoring my other children for that whole time. And I got slammed into the brick wall of mommy guilt.  So I tried to do better by those kids while taking Maura to doctors trying to pinpoint the cause for her delays.

Eventually I broke.  There were panic attacks, sure.  But apparently hyperventilating in my kitchen over something that wasn’t a big deal wasn’t a big enough wake up call for me.  Nor was hyperventilating over other things enough.  Nor was my messy house enough, or inability to make decisions, or urge to just run away from it all.  No, what did it was my husband asking me to get some help so I could be happy again.  Not that I was going around being outwardly unhappy.  I was just sort of frozen, unable to move forward with anything, and hiding my head in books and crafts.

So I made a call.  I saw a therapist.  I tried different anti-depressants.  I discovered that my system was quite sensitive and some of them made me nauseated.  I joked that being nauseated didn’t make me happy, and happy pills were supposed to make me happy dangit! I kept going to therapy.  I discovered that Prozac in a very low dose helped stomp down the screaming anxiety.  I figured out how to start digging the house out of its horrible state.  I learned to let some things go, and grew a backbone when it came to confrontation.  I cut through bullshit, and realized that life was too short to let my anxiety keep me in a choke hold.

I got better.  I weaned off the Prozac.  I was doing good.

But the problem is, I still had Maura.  I still had a natural tendency towards anxiety.  There was still stress, and there was still worries.

See, being a special needs parent, it’s like you have PTSD – except you never are “post” the traumas or the stress.  There is always something trying to rear its ugly head at you.  There is always something to set you off, make you worry, make those alarm bells scream in your head.  If Maura gets sick, I go into High Alert Mode and don’t sleep well because I worry that maybe this will be the illness that triggers seizures again.  If she acts off, I keep a close eye on her.  If she’s still awake at 11 pm, well, I’m not going to sleep any time soon either.

It’s an ongoing crisis.  It’s like having a low hum of anxiousness always playing in the back of your brain.  It’s living life knowing that one of your worst fears is your child dying before you, but your other worst fear is your child outliving you.  It’s having a moment in time when you realize just how much of your world is no longer “normal”.  It’s trying to live in the now, but worrying about what happens in five years, ten years.

It’s a never-ending cycle.

So when, after a move (which is stressful enough) internationally (which is even more stressful) and having to place Maura in a new school after a not great inclusion experience in the past (which just brings up all sorts of bad feelings) there was one day last summer when I had to drive over the bridge.  In the rain.  Which is actually quite normal in Seattle.  And was quite normal in Ireland.

I couldn’t do it.

I just couldn’t do it.

I pictured us spinning out of control, horrific crashes, and started hyperventilating.  I had to leave the highway and cancel the appointment I was taking Maura to.  Then I cried because I was disappointed in myself.

Being the jerk that I am, I tried to keep going along.  I thought that maybe I just needed to give myself a little more time to adjust to the big deal international move.  That maybe my anxiety would calm down.  Sure, there were days I couldn’t manage, and decisions I just couldn’t make.  Sure, I would think of something and the panic would pound in my chest and I’d have to control my breathing and calm down.  But I was certain I could manage it still.  Then my husband surprised me with a trip to Paris, and I realized my anxiety was so out of control, I was scared to death of getting on the flight.  Because, you know, plane crash, horrific So scared, I began to hope that maybe I would get ill and then couldn’t go. To Paris.

And I realized that my anxiety was getting the better of me again.  I mean, to give up going to Paris?  I had lost my damn mind.

So I ran to my doctor and said “Help!”, and she said “How?” and I said “Prozac?”  and she said “Here’s your prescription”.  I said hello to my little friend  again, then got my happy ass on the plane to Paris and made memories with my husband.  It wasn’t a cake walk, getting on that plane, but I was able to do it and didn’t cause a scene that required air marshals to tackle me in the aisle.

And you know what?  It’s okay.  It’s okay that I need a little Prozac to keep my anxiety more at bay.  It’s okay that I need some help dealing with my stress.  Anyone who thinks otherwise, who thinks I should just suck it up and deal, well, they can come spend a week in my shoes.  And then another week.  And another week. And another week.  Because this life of mine and the things in it?  This is for the long haul.  It’s a never ending cycle of stress and worry and anxiety.  There will be bad times, and there will be good times.  I’m just going to ensure that I have more good times than bad, and if that means taking a little bit of Prozac, or needing to talk to a therapist, so be it.

I will also highly recommend it to others going through this special form of never-ending PTSD.  We’re so quick to get help for our children, get them the therapy they need.  Just make sure you get the therapy you need too.

Me, in Paris.

Me, in Paris, which was therapy itself.

 

 

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