Autism Parents, There Are Other Parents Who Have It Worse Than Us Ya Know…
September 5, 2013
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Now Reading: Autism Parents, There Are Other Parents Who Have It Worse Than Us Ya Know…
September 5, 2013
(originally written & published on September 4, 2013)
Ok, now with that blog post title you’re probably thinking this is one of those blog posts where someone says “you should count your blessings” or “consider yourself lucky there are kids with other disabilities that are much worse off than our asd kids”
No this is not one of those posts. I hate that sh-t. I get that often when I vent and complain about autism, or when I lament the cognitive impairments that my son has. People will comment that “dont complain I’ve got it much worse off…at least your kid is potty trained…” or “at least your kid can walk”
The autism mom who writes the Facebook Page Mutha Lovin’ Autism said it perfectly when she wrote this on her page…
Whenever someone shares of themselves, they’re just needing someone to validate them, laugh with them, cry with them….be there. What they don’t need to hear is “at least your kid talks”, “oh yeah, well you’re lucky….my kid does ____”, “just be happy you don’t have to hear ____”.
Somebody always has it worse or better. Always. In this community, we don’t need someone making us feel bad for feeling ANYTHING that we feel. If you can’t relate, just let someone comment that does.
We need a safe place to share. Be careful not to ruin that for others.
I get that there’s tons of things that could be worse about my kid, but it’s my blog and it’s about autism and epilepsy and when I feel like venting I vent.
I wrote this in a previous blog post…
Many of you have multiple kids and some have multiple asd kids and you hear old Autism Daddy bitching and complaining with only one kid and you’re probably thinking
“WTF?, what’s he complaining about? I’ve got it 5 times harder than he does”…
To you folks I tip my cap and say, you win… you’re obviously stronger than me… having one kid like Kyle is about all I can handle…so I’m weak and you’re strong… I’ve only got 1 kid with asd and I’m on antidepressants…
So this is not what this post is about…
Here’s what this post is about…
As many of you know my son starting having seizures in late May 2012.
MAY 23, 2013
Autism Daddy updated their status.
Wed 7:07am — The king in the hospital for seizures, day 3. Today, most likely our last day here, brings on maybe the most difficult challenge… Keeping his majesty from eating or drinking anything between now and 2pm-ish when his MRI under anesthesia is scheduled for. I’m bracing for a long & torturous 7 hours.
And many people were OUTRAGED that they expected my autistic kid to have to wait til 2pm for his MRI! How dare they? They should make special allowances for him! He can’t go without eating!
MAY 23, 2013
Autism Daddy updated their status.
I love you guys. You guys are so angry & outraged on my behalf. 🙂
You guys are making me feel bad. Lol. Like I should be more mad than I am and screaming at the top of my lungs about my kid not having his mri til 2pm today and having to fast all day…but I’m really not, I really can’t be.
Who knows who’s already in front of us in line today and what their stories are?
And there’s a helicopter landing pad right outside Kyle’s room. What happens if some emergency car accident / brain injury flies in at 1:30pm?
What happens? We get bumped out of our 2pm slot. That’s life. Then we take our lumps, lick our wounds…
Our autism kids are special, yes, and you all know that I always play the “autism card” when I feel I have to (like at amusement parks 🙂 but this is one situation where my kid’s situation and autism and seizures and not eating for 7 hours may not be as important as 50% of the patients here.
They have a Ronald Mcdonald House attached to this hospital which leads me to believe that there’s some very sick kids here with parents who have to LIVE here for weeks (or months).
This is one place where autism and epilepsy might not be anywhere near the top of the list…
You know what I mean?
Then in September 2012, Kyle had hernia surgery and was sent home from the hospital same day and I wrote this…
As we left I had a moment that really put things in perspective. We were at a children’s hospital. And as we were walking to the car with the king and 2 bags of supplies for the 7 hours we were there (iPad, books, clothes, water, etc) there was a mom & dad walking near us in the parking lot.
The dad was carrying 2 small plastic bags and his wife said to him “I can’t believe that’s all we have for 7 weeks here.”. And he said, “7 weeks?”. And she said “Yep we were here 7 weeks to the day…”
And all I could think is…Wow…A hernia surgery is nothing compared to whatever those folks had to deal with with their kid.
And autism and seizures are probably nothing compared to whatever caused your kid to be in the hospital for 7 weeks.
Really feel thankful and lucky right now.
I’m sure that will go away in a day or two when Kyle acts dizzy or has what might be another silent / absence seizure. And then I’ll be stressed and back to my usual “woe is me…”
But for right now I feel thankful & lucky….
And then just this week I wrote this while waiting outside Kyle’s neurosurgeon’s office…
Tues 12:19pm — Successfully playing “The A Card” with Kyle’s neurosurgeon’s office.
He has a 12:30pm appointment. We were shockingly 25 minutes early. We parked, I called the office and said “we’re here, any chance of getting in early cuz as you know Kyle has autism and waiting rooms can be torture for him”
No way to get in early (of course) in fact the dr was an hour late and there’s 3 patients ahead of us…
But they took my cell phone number and will call us when he’s next! So we’re all sitting comfortably in the minivan. Me in the drivers seat writing this, Kyle in the middle row watching Dora and eating Cheerios, and wifey in the third row catching some zzzzs.
And many people were outraged that he was running an hour late. A few people suggested I let Kyle run wild in the waiting room, put on the full autistic show for them, that’ll teach them! and watch how quickly you get to the front of the line after they witness an asd meltdown.
And I wrote back saying…
Guys, he’s a neurosurgeon. 2 weeks ago Kyle was having surgery at this time on a Tuesday. Maybe a brain surgery went long?
Now here’s my point. Here’s what this post is about.
Y’all know I got no problem playing the a card. I play it at amusement parks, I got the handicap parking placard, and just Tuesday I used it at the dr’s office.
But I will readily admit that both dr’s offices and hospitals are different. They are 2 places that very often our autistic kids shouldn’t come first.
Sometimes the typical looking kid sitting next to your asd kid in the doctor’s office could have a much more pressing emergency than your kid…maybe he’s not typical at all…maybe he looks typical but has cancer or lupus or tons of other things…
or maybe he is typical but just has the flu…and your asd kid is just there for a checkup.
So while your kid having to wait might cause him to have an absolute meltdown and ruin his (and your) whole day… medically the flu beats a checkup (and meltdown) so all things being equal the flu kid should see the dr first.
An all out meltdown is horrible…trust me, I know…but it’s really nothing medically…it is a behavior.
and the idea that we should let our kids melt down in the dr’s office just to teach the dr’s staff a lesson or to force our way to the front of the line is ludicrous…and it’s cruel to our ASD kids. In my opinion, if you know you can avoid a meltdown you avoid one at all costs.
Basically just because our kids have autism doesn’t mean that we can always manipulate their situations to our benefit.
And now that Kyle has epilepsy the same holds true. We were at the neurosurgeon’s office on Tues. Kyle had surgery to implant a VNS device in him 2 weeks back to hopefully help reduce his seizures.
It was a tramautic experience for Kyle and for mom & dad. It is surgery after all…but in the grand scheme of things it’s probably the easiest procedure of this surgeon’s week.
So as we are sitting in his office (after sitting in our car) and as it’s now 90 minutes late for our appointment and I look around the waiting room and start thinking. “This guy is a pediatric neurosurgeon. So every kid in this waiting room has a situation that might require surgery, most likely brain surgery. That is HEAVY SHIT!”
And yes I know they might be typical kids who after this surgery will lead happy typical lives while I’ve got autism & epilepsy on my son’s plate probably for the rest of his/my life but right now in that moment in the waiting room they’re problems are equal to or probably worse than my son’s problems…and the look of worry on their parent’s faces beats the look of worry on my face.
And why was this neurosurgeon running 90 minutes behind schedule?, why did he show up an hour late? I was right…because he was performing brain surgery and there was a complication and the operation took an hour longer than scheduled.
But Kyle’s pediatrician is always making us wait too damnit! 🙂 …but you know why? Because he never says no to us… When it’s an emergency he almost always says “bring him right in”…
So when we have a scheduled appointment for a checkup and we he takes us 45 minutes late I think about all the emergency cases he probably snuck in before us.
So the next time you are in a dr’s office or god forbid a hospital and you’ve been waiting a while and your ASD kid is starting to meltdown, take a deep breath and look around the waiting room and think about all the stories behind those faces and think where does my kid’s situation rank?
Ok I’m gonna end it there. I haven’t written one of these long rambling blog posts in a long time. I hope I made sense… 🙂
Over & out…
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).