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.

Jenna

Three and a half years ago we began our foray into the special needs world. Our steps were slow and tentative, not knowing where this path would take us.

One of the first families I met was Tasha and her daughter Jenna. I still remember walking into the physio room at the Children’s hospital in the city and seeing the halo of blond curls that is Jenna’s trademark. We had no idea, then, that our girls would become fast friends.

A few months later I walked into the building where the local physio/support group for special needs kids was being held in our small town. I was surprised to see the familiar blond halo of curls there. I had no idea that Tasha and Jenna lived out in our area, since we had first met them in the city, but it was reassuring to know at least one family there.

Over the years the girls have grown together. We’ve watched them learn to walk, learn to talk, learn to run, and learn to get into enourmous amounts of mischief for two little girls who look so innocent.

They started preschool together last year, happy to play with the other kids in the class, but also happy to sit and hold hands together during circle time.

As the girls became friends, so did Tasha and I. A bond formed over diagnosis’s, doctors, and treatment plans. It was comforting to have someone I could compare notes with, commiserate with, and celebrate the milestones with.

For the past few years, Tasha’s mom has run our special needs group. She is the rock we all turn to. And Vista knows her as Grandma. She is as much family as anyone we’re related to.

Tasha’s boys go to the same school as Vista. They’ll always stop to say hi to her and give a little brotherly hug.

Tasha and her family have become an important part of our world.

But that world was rocked when Tasha’s daughter ended up in the hospital on last Friday.

A hospital stay for Jenna, in and of itself, is nothing unusual. But it was quickly apparent that this wasn’t going to be her normal get-sick-crash-bounce-back routine.

Since last Friday, Jenna has been in the ICU at the Children’s hospital. She’s on a ventilator. She’s flat-lined several times and been resuscitated several times. And everyday seems to bring a new round of complications. Pneumonia, hMPV, bleeding in the lungs, pulmonary hypertension, sepsis, low hemoglobin, the list goes on and on.

Jenna is a fighter, but she is sick. So very sick right now. And no one is sure if her little body can stand up against the onslaught it’s under.

So if you have a moment, could you send some good thoughts, positive vibes, and prayers their way?

They have a long road ahead of them and they could use all the support they can get.

Paging Dr. Freud

Vista, at the ripe old age of 4, is a master manipulator.

She’s smart.  Waaaay too smart.  And she knows exactly how to play people.

I watch her do it with her therapists when she’s not in the mood to work with them.  She’ll play dumb, bat her eyelashes, cock her head to the side, smile, and give a ‘I don’t know’ shrug.   At which point we’ve now trained her therapists to glance over at me, where I can give a slight nod to indicate ‘yes, she knows this.  She’s just fucking with you right now.’

The other day she was throwing a fit while getting ready for school.  It was only 7:30am and I had already had it.  So I looked at her and told her to drop the attitude.  She stopped, cocked her head to the side and gave me the biggest smile.  In return, I rolled my eyes at her.  “Nice try.  That might work on some people, but it doesn’t work on Mama.”

Without missing a beat, she let the smile drop and told me, “It works on Daddy.”

*snort*

Yeah, my kid’s no dummy.

This morning she was being a typical four year old, running around and not listening to a thing we had to say.  After 5 hours of this, Bil was understandably tired of it and told her “Enough.  You need to start listening to Mommy and Daddy.  You haven’t been listening at all this morning!”

Again, without missing a beat, she turned to him with a straight face and asked him “Why do you think that is?”

That *boom* you heard was Bil’s head exploding.

 

 

Cranky

Vista is slowly coming down from the two weeks of oral steroids she was on over Christmas for her asthma.  It’s hard to say when she’ll be back to ‘normal’.  But it’s definitely showing in her behaviors.

Her teacher commented on it at preschool on Monday.  When ever one of the kids would approach her she would scream and throw a fit (see: How to win friends and influence people).

Aaaaand that would be why we’re thankful she has an aide in class with her.  To deal with the situations like that.

At home, though, there’s no aide.  Just us.  It makes for some long days.  Add the fact that the steroids interrupt her sleep patterns and you have long nights too.  And I’m one of those people who NEEEEEED to sleep.  I love my sleep.  I covet the sleep I used to get pre-kid.  Lack of sleep = very cranky Jenn.

And that in a nutshell is why I haven’t been on the interwebs lately.

Cranky kid + cranky parents = not fit for human interaction.

But we’re slowly getting back to normal around here.   Whatever normal means.  If someone figures that out, let me know.

A Special Christmas

I’m over on the Ruckus Media blog today talking about how we don’t have a ‘traditional’ Christmas with our special needs daughter.

I’d love to hear about what you’ve changed up about your holiday routine to make your life a little less stressful this time of the year!

You can also head over to Ziggity Zoom for some free holiday printables for your kids!  (Free + Christmas+Keeping your kids busy = Awesome).

 


*Disclaimer: I haven’t been paid or otherwise compensated to talk about Ruckus Media or Ziggity Zoom.  I just think they’re great companies.  So there. 

Grifting vs Gifting

Way back in July I wrote a post about someone.  I took it down a few months later because, thankfully, it no longer seemed relevant.

Today, I republished it after it was brought to my attention that this person is back to her old patterns.  Same person, different name.

I kind of dread Christmas, in a way, for this reason.  It’s a holiday filled with generosity and giving.  It also a holiday filled with scammers, grifters, and con artists.

I’m not saying this person is any of those things.

I’m just asking you to do your due diligence before you donate.

If you really want to do good, there are lots of registered charities and organizations that would love your donations (your local food bank would be a huge one, this time of year).

But please be cautious of people who constantly ask for money on the internet.

I understand that desire to help, but it’s easy for people to create false identities and stories online to take advantage of people’s good nature.

The only reason I post this is to save my friends (who I know are all generous beyond belief) from being taken advantage of during the holidays.

========================

So here we go again…

First we have to set the story

nomoney Grifting vs Gifting

settingthestory Grifting vs Gifting

motherdying Grifting vs Gifting

Then comes the ‘ask’…

donate Grifting vs Gifting

And when that doesn’t get anywhere, you simply (and subtly) tweet each child’s wishlist

amazonwishlist Grifting vs Gifting

The request for retweets about her plight

retweet Grifting vs Gifting

Annnnd…the inevitable discrepencies

job2s Grifting vs Gifting

 

So, the money at her job is pretty good, but she’s so broke she can’t afford gifts for her kids, but can afford a new kindle, buy books for her kindle,  and is saving her gift cards to buy the even newer model (rather then buying gifts for her children)…. To each their own, I guess.

kindlebrandnew Grifting vs Gifting

kindlebooks Grifting vs Gifting

kindlenew Grifting vs Gifting

kindlemoney Grifting vs Gifting

What We Have Here is a Failure to Communicate

It’s hard when you’re trying to discipline your child by telling her that she’s lost TV privilages for the rest of the night and she helpfully suggests you should take away her dinner too.

*headdesk*

Trying to figure out a way to discipline a special needs kid who is completely oblivious to the fact they’re being disciplined?  Well, lets just say it’s an exercise in futility.   No matter what you say or do, there’s only one loser in the situation and it’s ALWAYS the parent.

It’s hard not to get even more frustrated trying to get them to understand they’ve done something wrong, when it’s obvious they have a complete lack of understanding around the entire situation.

Sometimes it makes me wonder if my kid will grow up to be a complete sociopath.  How can you have remorse when you don’t get that you’ve done anything wrong?

All this came up today after she purposely broke another one of her toys.  Why?  Because she didn’t want it anymore.

This is a common occurrence and it frustrates us to no end.  We’ve tried to explain to her that if she doesn’t want to play with a toy, that she can bring it to us and we can give it to another little boy or girl who doesn’t have toys.  But that hasn’t yet sunk in.  We’ve tried making her throw the toy out after she’s broken it, but she’ll happily do it.  She just isn’t that attached to anything.

And midway through the discussion on why she broke her toy, she burst into hysterics because she wanted her old white bed back. Yeah.  Six months after we redecorated her room and moved her into a big-girl bed and we’re still experiencing fallout from it.

Oy.  There are days when being a special needs parent is, well…special.

 

This and That

So much going on and yet I still manage to avoid posting here.

There was that whole Halloween thing.  We carved pumpkins.

halloween This and That

Guesses on who picked out which pattern?

Vista’s doing well in pre-school.  She still has her aide with her and I really think that’s made all difference.  There are still challenges though.  There always will be.  But there easy to forget when your kid brings home school pics that look like this:

Vista schoolpic This and That

We’re still waiting to find out when her spinal MRI is.  If we get it by next summer, I’ll be thrilled.  In the mean time we have to check in with the doctor once a month so he can check her reflexes to see if they’ve magically returned.

We’re still waiting on results from genetic tests too.  It’s been a year and a half.  They’re telling me it could be another year still.  Two and a half years for one test.  Awesome.

I’m finding when you’re a parent of a special needs kid that patience is a virtue.  It just doesn’t happen to be one of MY virtues.

Tricky Treats

Part of the fun of watching your kids growing up is watching them become more aware of holidays and the excitement that brings.

This is the first year that Vista’s really talked about Halloween.  She’s over the moon whenever she sees a pumpkin (which might include trying to walk off with the pumpkins decorating the local coffee shop… oops!).

But I’m discovering that the older your kids get, the more work Halloween becomes.

First the costume.

Vista originally wanted to be a butterfly or a lady bug.  And because I’m the obliging parent I dutifully looked for those costumes.  And proceeded to veto both.  Call me crazy, but I don’t think my daughter needs to wear a mini-skirt tutu to preschool.

We finally found a costume that satisfied both of us (cute enough for her, decent enough for me – with the option of being worn over a winter coat… welcome to Halloween in Canada).

Enter Little Red Riding Vista.

littleredridingvista 498x750 Tricky Treats

Either that or she’s a level 60 mage, casting a spell.  We’re not sure which.

Anyway, with the costume issue checked off, I moved to the next thing on my list.  Treats for her to bring to preschool.  Which as any parent with kids know, this is a WHOLE lot harder than it sounds.

I was planning on doing up little treat bags for each of her classmates.  Simple in theory.  Until you factor in that Vista’s friend, J,  who is also her classmate, has a severe anaphylactic nut allergy.  And when I say serious, I mean I’ve seen this kid react after touching something that had been played with by another child who’d eaten peanut butter earlier in the day.

Oy.

So I checked with J’s mom to see what candy I could bring.  I mean, surely there was lots of candy out there that’s peanut free… I just had to avoid the peanut chocolate bars, right?

Uh…yeah… wrong.

I had no idea that Halloween is so dangerous for kids with peanut allergies.  J’s mom knew of only a few candies that were safe for these kids.

So off I trooped to the local store.  And I read label, after label,… after label.  Peanuts, traces of peanuts, may contain nuts.

*headdesk headdesk headdesk*

Are you kidding me?

In this day and age everything has nuts in it??

Back home I turned to the great Google in a quest for peanut free candy.

Low and behold, I find out that Canadian company, Allen Candy (their Easter bunnies have been a staple in our house for a loooong time) makes peanut free candy!  YAY!!

They have Allan Intense Jubes & Jellies, Allan Chewy Rascalz and Allan Fruit Buddies*, all peanut free and enough to make great little treat bags for pre-school kids.  Double YAY!

Now that that’s out of the way, the only thing left is to top last year’s jack-o-lanterns…

026 750x498 Tricky Treats

* For those of you also looking for peanut-free Halloween treats, Allen Candies can be found in retailers like Wal-Mart and Loblaws

 

 


Disclosure – I am participating in the Allan Candy Company program by Mom Central Canada. I received compensation for my participation in this campaign. The opinions on this blog are my own.

 

 

As The Seasons Change

Ahhhh… October. The changing of the leaves, the return of the pumpkin spice lattes, pulling the winter wardrobe out of storage…

What? Not everyone gets to experience the joy of packing away all the summer clothes and pulling out your winter outfits that have been packed away for the past…ummm…three months…?

It’s SO! MUCH! FUN! *cough*

I just love having to go through every single shirt and figure out if it still fits Vista or if it can go in the donate pile. Love it, I tell you! I can’t think of anything I’d rather do with an hour of my life. *sob*

Vista on the other hand is beside herself with joy. She’s a firm believer in the theory that a girl can never have too many clothes.

Every shirt she pulls out needs to be ooooooohhh’d and awwwwwww’d over.  Then it has to be hugged.  Like you would hug a long lost friend.  Then she has to exclaim “Oh! My favorite shirt!  I’ve missed it SO MUCH!!” over Every. Single.  Shirt.

It’s a loooooong process.

Don’t even get me started on the absolute elation when she discovered the pile footie pajamas.  She’s a footie girl, through and through.  There might have been squeeing  (on her part) and a few advil popped (on my part).

On the bright side, since she so excited about the new-ish clothes, she’s more than happy to help put everything away in the drawers.   Child labour for the win!

The wardrobe change over does tend to highlight exactly how much your kid has grown over the summer, though.

I put a size 5/6 shirt on her this morning, thinking it would still be fine on my 4 year old.  Uhhh, yeah… that would be a negative. Unless of course I was looking to send her to school in a belly bearing crop top.  Oy.

I am thanking my lucky stars I stocked up on a bunch of size 7/8 winter clothes when they went on sale last spring, otherwise I’d be taking out another mortgage just to keep this kid in clothes.

Have you started the great clothes swap with your kids yet?

 

 

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