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.
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.
We asked our waiter, Patrick, for another round and he brought out Nic and Dre’s glasses of wine. He apologized to Nic; they had run out of the Pinot Grigio she had been drinking so he substituted a different one for her.
She took a sip. “This is a chardonnay.”
Patrick looked confused. “No, it’s a pinot grigio.”
Nic took another sip. “Nope. Definitely a Chardonnay.” She handed the glass to Dre for her opinion. “Definitely a Chardonnay” agreed Dre.
He paused. “I’ll be right back,” Patrick said, disappearing behind the bar.
A minute later he came back with another glass and a bottle of wine. “You were absolutely right. It was a chardonnay. I am SO sorry for the mistake.”
We all had a great laugh and high-fived Nic on her stellar wine tasting abilities.
Patrick poured her a fresh glass out of the bottle of pinot grigio. There was about a quarter bottle left. He put it on the table. “I’ll just leave that there for you,” he said with a smile.
This was a simple mix up. Not a big deal in any way. But the recovery from the mistake? Amazing. Two days and and a few drinks later, I still remember our waiter’s name. We even tweeted the Hilton telling them that Patrick needed a raise (and he really does). That quarter bottle of wine probably cost them $5. Good publicity? Priceless.
This is the area where a lot of companies in the customer service industry fall flat.
Issues happen. They do. Nothing ever runs smoothly all the time.
But it’s how you recover that will make or break your reputation these days of social media.
Take for example my flight to get home from NYC on American Airlines.
All I wanted all day was just to get home so I could cuddle Vista, and smother her in kisses, and tell her how much I missed her. I’d been away from her for a whole week. That’s about 6 days too long for me.
It was going to be a late night (my flight wasn’t due to arrive until after 9pm), but Bil and Vista were going to make the drive into the city to pick me up. I couldn’t wait to see her. I breezed through my flight from Newark to Dallas. And then the day started going downhill.
First one gate change. Then another… …and another… The depart time on the flight kept getting later. 6pm…. 6:40, 7:00, 7:10, 7:50, and on and on.
With each time bump I got more and more upset.
I. Just. Wanted. To. Go. Home.
I was tired. I missed my daughter. I missed my husband.
By the time the depart hit 8:30pm, I did the math. By the time the plane lands + get my luggage + make it through customs, carry the one…. and…. it was going to be to late to bring Vista into town to pick me up. And no way I could afford the hour and a half cab ride to our town, IF I could even find a cab to take me. I was heartbroken. I sat in the airport wiping away tears of frustration.
I. Just. Wanted. To. Go. Home.
Resigned, I called my parents, and asked if I could stay at their house in the city until Bil could get in to pick me up in the morning.
Another gate change.
A change in terminals.
The flight got later and later.
And through all this there was no communication around WHY our flight was so delayed.
Finally at 9pm, we got on a plane. And sat there. We all looked around the plane. We’re we EVER going to get home?
The plane did, eventually, take off. By the time we got in, it was almost midnight. I had left the hotel at 9:30am.
And what did American Airlines do to make up the huge delay and hours of treking around the Dallas airport?
Not One Thing.
Not the offer of a complementary beverage. Not even a cookie.
Not only that, but they didn’t even bring enough customs declaration forms on board. Not even enough for half the plane.
Don’t you think during the HOURS of delays they might have been able to get that one thing together?? Yeah, you would think. But no.
As we say on twitter. #EPICFAIL
How much does a cookie cost? Weigh that against all the tweets that went around with their ID in it complaining about the flight delays, lack of explanations, and lack of recovery.
Service companies take note. Social media rules these days. Put your best foot forward and when things do go sideways make sure you have a recovery plan in place.
There is a particular brand of women I don’t tend to be friends with in real life. I have no patience for them. I don’t want them around me.
Yet I find it harder to escape this type when I’m online. Social media tends to breed them.
I’m talking about women who are The Victim.
These are women that have a pervasive ‘woe is me’ attitude… about everything. And they’re too busy crying about how life has done them wrong to change anything.
I know everyone goes through their ‘things’. People are entitled to bad days, bad weeks, even bad years. Sometimes shit happens. Even I’ve had my fair share of downer moments on this blog in the past few years.
But it’s when you’d rather sit around feeling sorry for yourself, wallowing in your own self pity, that I tend to tune out.
My friends in my day-to-day world tend to be women of strength. Women who, in some cases, have been dealt a pretty shitty hand lately. And they’ll talk about their frustrations and what’s bothering them. Sometimes they even have a good cry over things. Then they pick themselves up and move forward. Because life does not stop. They are women who choose to focus on what is right in their lives and make the best out of what they can’t always control.
Then you have the other category of women. I sometimes wonder how much of their constant personal drama is locked into a cycle because they feed off the attention of others. They surround themselves with people who will pat them on the head, tell them how life has dealt them a raw deal, and constantly confirm to them how wonderful they are, over and over and over and over,… and over and over and … yeah, well… If you’re that type, I probably stopped reading and commenting on your blog about 5 ‘overs’ ago.
Anyone who knows me, knows that I never expect people to agree with me on everything (just like I don’t expect everyone to agree with this post). My friends regularly have discussions on differing opinions. I love that. I feel it helps me learn, grow, view the world as I might not have thought to.
By surrounding yourself with people that will only agree with you, and attack anyone who says the least little thing outside of the acceptable rote responses, you are locking yourself into victim mode.
What I’ve been considering, lately, is how much I contribute to this by not saying anything. By not commenting that ‘hey, I’m sorry you’re having a rough time, but look at your wonderful healthy kids, your great job, your nice house,’ am I just as bad as those people who smother The Victim with the protective shield that drips with venom for the naysayers?
And I guess that’s why I don’t speak up. I don’t want to become a target for the whiners posse who are posed to attack anyone who doesn’t agree fully with everything The Victim says. I don’t feel like causing huge internet drama through one comment.
And so, the next question becomes, as my hand hovers over the unfollow and delete buttons, why don’t I just eradicate these people from my online life like I would my real life?
Possibly because I have learned that in this day of social media that a simple unfollow, a quick delete, a removal from my blog roll (blog rolls are meant to be dynamic, people. Sheesh. Who I read changes on my mood), can cause just as much drama. Because for The Victim, anything that can cause drama means more attention for them. Booyah!
So either way I’m left feeding the addiction for these people. And I do believe it’s an addiction. To attention. To blog stats.
So what to do?
Cause drama, or sit back and watch it?
It’s 11:30am and I just watched Vista crawl up on the couch in the living room and fall asleep. I waited a few minutes then went over to her, gently picked her up and carried her to her bed and tucked her in. She barely stirred as I walked with her down the hallway.
And now we wait for the chorus of “Oh man, your three year old naps?!? You are so lucky!!”
But right now, I’m not feeling really lucky.
Because for us, that nap doesn’t mean she’s tired, that nap means her seizure meds aren’t working.
She had two seizures over the long weekend. One on Sunday while she was out with her respite worker, Dorothy and her family. Then, yesterday, we were over at her Dorothy’s house (as over the past year they’ve become very good friends of ours), and just before dinner she came and sat down next to us and had another seizure.
She seems to know when she’s going to have them as she always manages to be sitting down when she has one. On Saturday, she crawled onto Dorothy’s lap, told her that her head hurt, then had her seizure. I don’t know what her warning is… I suppose I won’t know until she’s older and understands enough that we can ask her to describe it. But it does help calm the fear that one day she’ll have one while walking down a flight of stairs or something.
So here we are at today. She slept for 14 hours last night after her seizure. Which is how we confirm if it was a significant seizure or not. Minor seizures don’t affect her. But when she sleeps from 7pm to 9am (her normal sleep time is 9pm – 5am)…yeah, it tells me we have a problem.
And now she’s sleeping again after only being up for two hours. Which means I probably missed a seizure while she was outside playing. That’s three in three days. And that? Is not a good thing.
So here we are again. Waiting for a call back from her neurologist and probably playing the medication game.
Part of me wants to sob in frustration.
Part of me is worried about the effects these seizures might have on her speech and motor skills again.
Part of me wants that magic cure, dammit. Something we can do so she’s not having to go through this anymore.
But mostly right now, I just want her neurologist to call back so I can find out what then next steps are to getting her well again.
Mama bear instinct. Most mothers have it. That need to protect, not only our own children, but any child we see being neglected or abused.
I used to be very vocal in my judgment of parents who weren’t, in my view, perfect.
That, of course, would be before I had a child with special needs.
And let me digress for a moment and say something about those two words ‘special needs’. I’ve always hesitated to use them in regard to Vista. Outwardly she appears normal. Most people passing her on the street would never guess she’s anything but. She looks just like your kid, and your kid, and yours. Only she’s not.
Did you spend an hour this morning laying in bed with your child, not cuddling them, but restraining them while they shrieked and screamed and fought to get their hands free so they could punch and hit and attack you, as you softly talked and sang to them, trying to refocus their attention and calm them down? No? I did. But you’d never know that to look at my daughter, happily playing an hour later, while I still struggled to suppress the anger and frustration I felt over the incident. That was before 7am this morning. And that is not an unusual way to start or end my days. But, she looks normal.
And that exasperation may have come through as I snapped at her as she dawdled to the truck, fiddling with her umbrella in the rain, this morning. “I’m wet, you’re wet, group starts in 10 minutes… LET’S GO!”
But all you would have seen is me snap at her. And I’m sure the words “What a bitch” would have flitted through your mind as you walk past and felt sorry for my daughter at having such a horrible mother. You wouldn’t have noticed the long sleeve shirt and jeans I was wearing to cover the bruises left from her lashing out yet again. Nor would you have noticed the cap I was wearing to hide the fact the hour spent restraining her had used up the spare moments I might have had to grab a shower or even actually run a brush through my hair.
And yet, there you would have stood in judgment because that mama bear instinct is to protect the child…not the parent.
I don’t condone the actions of the parent. Did she cross over that invisible line of what is acceptable in private, never mind public? Yes, probably.
But consider this, if you will. Every mother out there has had one of those days where they’re at their wits end with their children. Where they just want to escape and can’t handle one more second of the whining/fighting/arguing/tantrums/crying/insert your child’s favorite button-pushing behavior here. Now imagine having those days EVERY DAY FOR MONTHS ON END. That can be what having a special need child is like sometimes. At some point, if you don’t have the supports in place to help you deal with this sort of stuff (like I’m lucky that we do), you will lose it. And sometimes that happens in public.
I’m not saying the child in this story Janna wrote about was special needs. I don’t know. I have no idea what issues the mother might be dealing with. Because Janna’s instinct was to protect the child and say “I can do this better”.
Rather than approach the mom with an accusatory sentence of “I don’t think you should talk that way to your son,” as most of us (myself included) instinctually would, why not go up and say “Is there anything I can do to help you?”
Find out what is going on that has brought them to the point that they have completely lost it in public.
And they may not want your help, and there may be nothing you can do.
But never think you can do it better until you know what’s really going on and have walked a mile in their shoes.
We are so quick to judge and hate each other. Would it be so bad to hold out a hand instead and say “I understand. Let me help”?