parenting

And It’s Time For Another Reality Check

I was on my friend @Psychmama’s Facebook page the other day and saw that someone had commented on her sharing of the What I Would Tell You post (if you haven’t read it, you really should. Well worth it).

This is the long comment I saw.  And of course, I couldn’t help but respond, because, well… I’m me.  (click to see it full size)

britta 217x750 And Its Time For Another Reality Check

Britta,
Caring and ‘getting it’ are two vastly different things.

You can SYMPATHIZE but you cannot EMPATHIZE if you have never been a special needs parent. And there is a deep and wide chasm between sympathy and empathy in the special needs world.

That would be like me telling a doctor that I care so I should be allowed to do surgeries. I guarantee that doctor would be taken aback and insulted.

See… the big difference between special needs parents and someone who hasn’t walked in our shoes is that we see our kids as normal. They are normal to us. They are our children and we live every day with their disability. That is OUR normal. When people come up and try to do the ‘I’m pretending I’m treating your kid like they’re normal’, it pisses us off. Because the first thing you noticed was not their smile or how much they love to laugh. It was that they can’t walk/talk/eat/fill-in-the-disability. So we slap on the fake smile until we can escape and shake our heads about the people who think they understand, but really don’t.

We don’t want pity for our children. We want our children to be accepted for exactly who and what they are; to be treated like any other child. Not to be marked by their challenges. Unfortunately, yes, we are a ways off, as a society, from being there.

And the old ‘God will never give you more than you can handle’ IS bullshit. Because there are days when we are totally overwhelmed with it all. After your child hasn’t slept for weeks, or months, or in many cases, YEARS, you wake up and think ‘I cannot do this today. I just can’t’. And you dream of normalcy. And you have yourself a good cry in the shower before you go on with your day. Because being a special needs parent isn’t easy.

I won’t lie. There are the good parts. I’ve met lots of wonderful people because my daughter is special needs. But those friendships are not like normal friendships. Dawn and I have spent the last month supporting one of our friends who’s daughter has been close to death in the hospital. Every day we are there to listen, to research, to offer advice, and just to be there while she cries. And then we go back to our lives and cry ourselves because that could be our child in the hospital and part of us is so glad it’s not. But we understand on a level that most people can’t. And that is why, in crisis, we turn to parents who have been through what we’ve been through. Parents who can speak in medical terminology and acronyms, for that is the secret language of special needs.

And being friends with special needs parents brings other challenges. If anyone has so much as a sniffle, playdates are cancelled. They’re also cancelled because their kids or mine are feeling too overwhelmed/tired/anxious/overloaded/overstimulated on that particular day. Parents of normal kids get frustrated when we cancel last minute because of these things. Special needs parents just say ‘Oh, no worries. I totally understand,’ and you know they do, because the next time it will be their turn to cancel.

Special needs kids are wonderful and unique and challenging. As much as I love my daughter, I would never wish a special needs child on anyone. Not because I think they are ‘less than’, but because there is so much that goes on day-to-day that cannot be shown on some TV show. I’m talking about the doctors appointments, meeting with therapists, documenting of medicines, organizing of supports, purchasing of special support equipment, dosing meds, special exercises and the list goes on and on. So much of our days are consumed living with special needs rather than living with a child.

Therapists don’t parent our children. They are not nannies. They give us the resources to help our children reach their milestones. But much of the actual work, still falls to us, the parents. Where you would sit and play with your child, we consider what developmental area we’d like to work on and pick toys or activities appropriate to that.

When you leave the house, what’s the first thing you pack? Diapers? Oh your child is potty trained? Yeah, my almost 5yr old isn’t. Special needs, you know. How about meds? Oh you don’t need to carry a med case? Ours goes everywhere with us. Inhalers, spacer, anticonvulsant, oral steroids, fever meds, allergy meds, pulse-ox, stethoscope, thermometer, and of course My Little Pony bandaids…can’t forget those for when her balance goes and she does a faceplant in the gravel. And then we have to make sure we’re home in time to give her the evening doses of meds (unless we make a special point to pack those and bring those with us). This is all part of normal life for us. Not the glamorized medical docu-drama you see on TV.

You seem to have romanticized being a special needs parent. For that reason I hope you never are, because your world would come crashing down. Being a special needs parent is being vomited on every day (sometimes several times a day) for years. Being a special need parent is wiping feces off walls from kids who should be old enough to know better. Being a special need parent is cleaning up tube feeds that have spilled the entire contents of the feed bag over the floor. That is being a special needs parent. It’s the furthest thing from glamorous.

Is it rewarding, though? Yes, in the way that parenting any child is rewarding. You celebrate the milestones and the successes. They just don’t always come where and when you expect them.

But when you come up to a special needs parent and tell them you would love to have a special needs child, don’t be surprised if the reaction is less than favorable.

Grow Up

You know you’re finally grown up when you can forgive your parents for all the mistakes they made raising you and start making your own mistakes with your children.

Our parents weren’t perfect.  Just like we’re not perfect parents now.

And you know what?  That’s OK.

Because we’re only human (your parents too… hard to believe, I know).

 

Sudafed Is My Gateway Drug

I keep coming to my blog wanting to write something.  Something cute and fluffy with cute and fluffy things in it.  Like a post about my dogs and cats and how cute and fluffy they are.  Well, make that dogs and cat.  Because the other cat may be cute and fluffy but she’s dumb as a post and I’d rather she was stuffed and sitting on my fireplace mantle, but since she’s Bil’s cat, that hasn’t happened yet.  Nor have I fed her to the local coyote pack, although I’ve been sorely tempted on more than one occasion.  But then Bil would get all whiney about how I killed his stupid cat, and blah blah blah… so, she’s still alive.  For now.

Where was I?  Oh right.  Cute and fluffy.

Yeah, not feeling so cute and fluffy. Well, maybe fluffy, but I totally blame the local bakery for that.

I’m like my own version of the seven dwarfs, lately.  Bitchy, whiney, sneezy, wannabe doc, fluffy, zombie, and doped up.

And all I really want to do is whine about how hard this parenting gig is, right now.  We’re starting to rack up frequent flyer miles at our local ER.  And you know it’s bad when the doctors look at your kids chart and start discussing your opinion on possible treatment options.  I’m still waiting for my medical degree to magically appear in the mail.

Remember how, before you ever had kids, people would tell you how hard it is?  And you’d look and them and think “ZOMG…shut up and get over it.  It’s a kid.  How hard can it be?”

Yeah.  Totally eating crow now.

The universe thinks it’s funny.  Me?  Not so much.  I find it’s sense of humor rather lacking, these days.  Along with the amout of sleep I’m getting.  Which tonight I can fully blame on the Sudafed I took before bed.  That stuff makes most people drowsy.  You know the whole ‘don’t opperate heavy machinery or you might poke someone’s eye out and then you’ll be sorry, but it won’t be our fault because we told you not to do it right here on the box’ warning?  Yeah, doesn’t apply to me.  Apparently, Sudafed jacks me right up.  Like RIGHT up.  Like holy hell I haven’t slept tonight and WEEEEEE I feel fucking awesome jacked up.  So… uh…yeah, not taking it before bed EVER again.

And I probably shouldn’t be allowed to blog while under the influence of sinus cold meds either.

I don’t see a warning for THAT on the fucking box.

Parenting Expert

It’s been my experience that many people who consider themselves ‘parenting experts’ are those who have managed to raise one or or more perfectly normal little children.

It’s rare to hear a parent of a special needs child refer to themselves as an expert in anything.

We quickly learn that what works for ‘most kids’, rarely, if ever, works for ours.

And so we’re left slogging through trying to come up with something, anything that will work.

Because what works today, probably isn’t going to work tomorrow, or an hour from now.

I can’t even begin to communicate the level of frustration that brings.

And yet for the solutions we do find that we manage to make work we are look down on and called out by parenting experts and even other parents.

YES MY CHILD WEARS A BACKPACK LEASH SOMETIMES WHEN WE GO OUT.

According to one of the parenting experts on twitter, this means I’m treating my child like an animal.

*insert tears of frustration here*

Never mind the fact that Vista actually LIKES to wear her backpack.  She often brings it to me and asks to wear it around the house.

Never mind the fact it’s an easy, no fight, solution to walking around busy places with lots of people.

It was suggested I use a ring-sling as a harness.  That would be great for 5, 10, maybe even 15 minutes.  But for a 1 or 2 hour walk with a 45lb Amazon 3yr old? With a child who often can’t bare to hold hands because of the feel of it? A child to whom a gentle guiding hand could cause a complete meltdown because I touched her?  A child who will wonder off and not even consider where mom and dad are?  A child who would walk off with a stranger without a second thought?  Uhhh….yeah….

But I’m treating her like an animal because I put her backpack leash on her.

Well parenting experts, you come spend a day with me.

You go through the 2 – 3 hour battle of the meds in the morning.  These meds are not optional.  She must have them.  Not taking them could result in seizures that could kill her.

You take a child with sensory issues, epilepsy, and other brain issues, for a lovely walk in a crowded place with just a ring sling.  Don’t forget the behind-the-head headphones to help her block out the sounds.  And a package of wipes just in case she accidentally touches something and starts screaming about her fingers being dirty.

Then come home and start battle #2 of the meds.

Now it’s time to fix dinner.  Don’t forget the bowl you serve it in cannot be warm or it’s considered hot and no food will be eaten.

Oh, no, you don’t get to eat dinner too.  No, this is where you sit and help the child with their spoon or fork, because at 3 years old they still aren’t able to manage it.

Now it’s time for battle #3 of the meds.

Tired yet?

Oh well, you still have to give the kid a bath and put her to bed.   Don’t forget that no water can get anywhere near the face or it’ll be an epic meltdown.  Oh, and brushing her teeth will require a specific tooth brush (her choice, it changes daily.  But don’t use the wrong one or…yeah, epic melt down).  Oh, and if you pick the wrong toothpaste?  Then you’ve just extended bedtime by half an hour while you calm her down.

Yeah, good luck with that.

If you make it through the day without ending up in tears yourself, then maybe I’ll consider your advice.

But only maybe.

The Neverending Story

I was going to post a really hysterically funny video of Vista today. At least Bil and I found it hysterically funny. But then again, it’s well known to the world that we have a sick and twisted sense of humor.

I know, you’re sitting there going ‘OK, well, if this video is so damn funny, where is it??’

Well, here’s the thing.

I’ve decided not to post it.

The video was something along the lines of this, with a little less Will Ferrell, less scripting, and a lot more of me doubled over laughing in the background.

But after having CPS called on us last November, we’re quite frankly a little gun shy about putting anything out there that might smack of anything less than perfect parenting.

And then I think about that and it REALLY. PISSES. ME. OFF.

I’m not perfect.  Show me a parent who is.  And yet, here I am trying to live up to some impossible standard because somebody who knows nothing about me decided he should get some say on how I parent my child.

Now every time I’m out with Vista, I’m crossing my fingers that she doesn’t have a meltdown, and that someone won’t decide to stick there nose into something that is, quite frankly, none of their business.

I’m finding a lot of things don’t get done these days.  If I drive somewhere and Vista falls asleep before we get there?  Rather than wake her up, take her in the store, and chance an outburst, I turn around and go home.  Because?  It’s not worth the risk.

I walk around on egg shells hoping that no one will find fault that’s not there.

And I thought at first it was just in this small town we lived in.  I even tossed the idea around of moving somewhere new.

But then I realized, it’s not the town.  It’s me.  This… thing… has pervaded to the very core of my parenting philosophy.

And now it’s invaded my blog.

It’s like I’m living in Fantasia and being hunted by the Nothing.

This need to censor is at direct odds with the person I am naturally.

I am irreverent.  I am risque, at times.  Ditto for controversial.  That’s who I’ve always been.

I’m not someone to toe the line or follow the norm.

And yet I find myself doing exactly that, because I will do anything to protect my child from ignorant people who think they know more about her than I do.

 The Neverending Story

Before You Judge My Parenting Skills…

When you see my child having a complete throw-down temper tantrum in the store, please don’t assume she’s just spoiled and throwing a fit because I won’t buy her something.

When you see my child crying and me standing there not comforting her, please don’t assume it’s because I’m an unfeeling parent.

When you see my child sitting in a restaurant watching a DVD player or playing with an iTouch with headphones in her hears as she watches videos, please don’t assume we are bad parents who sit our child in front of the TV all day.

When you see my child walking through the mall with a backpack leash on, please don’t assume it’s because I’m a lazy parent who can’t control my toddler.

We live in a reality very different from yours.

A store with lots of smells and noise quickly causes sensory overload for my daughter.  She screams and yells and lashes out and throws herself at me because she has no other way of dealing with her overwhelmed senses.

When she is crying and upset, sometimes it is also because of sensory overload.  For me to pick her up, touch her, comfort her with words, would just add to the sensory stimulation and make the situation worse.  So I stand next to her.  Not touch her.  Not saying anything.  And wait for her to start to calm.  Then I quickly try to refocus her attention on something pleasant for her.

You may see me at this point hand her the iTouch.  It’s not because I don’t want to deal with her.  It’s because after two years of trial and error, we have found an iTouch loaded with coloring / counting / alphabet games and her favorite videos is an effective escape for her.  She is able to focus on it and shut out the external sensory stimulation and therefore calm herself.

A restaurant with loud background music, people talking, weird lighting, is especially overstimulating.  Without a DVD or iTouch to block the sounds and sights, we have less than 5 minutes before you will she her with hands over her ears screaming “TOO LOUD!” over and over.  Then she will start yelling and signing “All done.  All done!”.  Her way of letting us know she needs to get out of that situation and it is too much for her.  Yes, we could lock ourselves in our house and never take her out to a restaurant.  But we want to experience things in her way.  So we choose to use distractions to allow us all to enjoy a meal out without disturbing the other patrons.

And when you see us walking with Vista and she has her backpack leash on it’s not because we have no control over her.  Exactly the opposite.  But to hold our hands in a mall setting is too overstimulating.  The sights, sounds, lights plus the added sensation of touch is too much.  So we use the leash instead.  The clasps on the backpack that go across her chest and hold it tight to her back, also act as a compression which helps calm and focus her.

So the next time you see my child, any child, acting out; the next time you see parents who are not parenting the way you think they should; stop and consider.  What is going on behind the scenes that you have no information on.  Just because kids look normal, doesn’t mean they live in the same world you do.

I don’t know anything about your life.  Please don’t assume you know anything about mine from seeing one two minute interaction with my child.

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