I don’t need your help to feel guilty

      42 Comments on I don’t need your help to feel guilty


It’s been a little while since I have been inspired to really sit down and write something with the hopes of really getting my point across. Having said that, I feel compelled to address something that I feel very strongly about.

The other day I shared something I found on Fox News. It was a story about a 5 year old little boy with #Autism who was denied lunch because his parents were a few days behind on the payments (see: FOX News: School Denies Autistic Boy Lunch Over Billing Issue).

I had to ask myself, how does something like this happen? 

How can a grown person, look at a child and deny them food? Does this have anything to do with the child having #Autism or is this just the way we treat our future generation?



The school calls is an oversight. Maybe it was, maybe it wasn’t.

Regardless of what happened, I was really surprised to read some of the opinions from my readers.

One in particular really rubbed me the wrong way.



A comment was made that the parents were irresponsible for not paying the lunch bill on time and that somehow they weren’t making their child a top priority. I’m paraphrasing here, you can read the comments in question at the above link.

It was insinuated that these were bad parents.

Personally, I found this to be quite an arrogant thing to say.

Not only did it show a complete lack of compassion but also a complete lack of understanding for what it takes to be a special needs parent. We also have absolutely no idea what else is going on in this family’s life.

The commenter never stated whether or not they had any experience in special needs parenting and honestly, I doubt they do.

To me this shows just how much work we, as a special needs community need to do in order to better educate the masses.

Should the parents have paid the bill on time? Of course.

However, there is an entire laundry list of past due bills on my desk. They are left unpaid for a multitude of reasons. However, none of those reasons have to do with being lazy, irresponsible or being a bad parent. I have no idea why these parents were behind on the bill but I’m willing to bet it didn’t have anything to do with bad parenting.

What people don’t seem to get is just how all encompassing, special needs parenting is.

Speaking only for myself, I don’t even know what day it is half of the time. We have been known to miss appointments, be late on school related bills and even live out of a laundry basket in the living room because the clothes never make it to the dresser. 

Does that make me a bad parent? If so, than I guess I’m guilty as charged.

While I’m far from the perfect parent, focusing on my weaknesses ignores all of the things I do right. I would like to think that the things I manage to accomplish, far outweigh the things I drop the ball on, although it never feels that way.

I can go days on end with only minimal sleep because one or more of my children can’t sleep. I can also drive hundreds of miles every week to and from appointments for my kids.

Let’s not forget the hospitalizations and or medical/behavioral emergencies I deal with all the time.

I know that these things are not foreign concepts to many of you out there as you experience these things for yourself.

I could go on and on, listing example after example of how and why something like getting behind on the school lunch bill could happen. However, I don’t think it would make any difference to those out there casting judgement without any knowledge or first hand experience of what life can be like as a special needs parent.

I’ll leave you with one final thought.

When you feel the need to judge a special needs parent for something they missed or a mistake they made, remember that we judge ourselves harshly enough already. We don’t need any of your help to feel guilty, we do a more than adequate job on our own. 

Take a second and answer the poll

As an Autism parent, do you think you've become so used to the high levels of stress in your daily life that you've normalized it or no longer realize it's there?

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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Grandma K
Guest

The world really lacks when it comes to lessons in EMPATHY!!

Kibblet
Guest
Kibblet

There is something we Quakers say when someone hits it spot on: "Friend speaks my mind." You did. 

Chloe123
Guest
Chloe123

Rob, you and Lizzie are AWESOME, AWESOME parents!

AngelFire
Guest
AngelFire

I am a special needs parent, and my children are my TOP priority.  I work 2 jobs, my wife works 1, and we find time to care for the kids (without daycare or special provision) and pay the bills.   I think the absolute most important bill on my to-do list is feeding my children.  Groceries, snacks and money in their school lunch account is at the top of my list.  How can any parent send their child to school with a zero balance is beyond me!  What do they do…rely on hope and the kindness of strangers to feed… Read more »

kat13
Guest
kat13

Special needs children are different. With what you might be having is a child with some medical needs and not neurological needs. Medical needs almost always covered by insurances, where neurological needs are practically never. It also depends on the carrier, and the area…    So the point is that parents of children with autism end up buried under medical bills. And trust me I had myself worked myself 4 jobs just to make it happen so there is some food on the table. And being a single parent that isn't easy with 2 kids and 1 on spectrum.    Daycare centers deny… Read more »

HeatherESedlock
Guest
HeatherESedlock

 @angelfire While I agree wholeheartedly with you that feeding the child falls primarily on the parents' shoulders, I disagree with your assumptions and arrogance and judgemental attitude. If you want to state that you, as a parent, has never faced the challenge of deciding between feeding your child (whether that's the school lunch program or at home, both come from the same category), I have no problem with that. Kuddos to you. It takes more than luck to make that happen. I recognize that. Not everyone has the same skill set as you, however. I have classical autism. I'm 35 years… Read more »

DeeBrake
Guest
DeeBrake

i guess i must be a bad parent too. that laundry hamper thing, the running around while tired, the oops missed that appointment thought it was thursday when it is friday… unpaid bills. ya, that too, they usually call me and say whats up with the bill. so i guess i must be a bad parent…. HA YA RIGHT!!!! i am not superwoman but i am doing the best i can and i think my kids have it good (in my opinion) they may not be the DS carrying cell phone using 8 year old with a $20 allowance and… Read more »

JenniferWhynott
Guest
JenniferWhynott

Well said. Often times I imagine I look like a basket case when I am at the store with 4 kids in tow that are big for their age. People expect them to act older than they really are. I usually have one in a meltdown or on the verge of one and 2 that are bickering or flat out smacking each other. I AM THAT MOM who is counting to 3 in the next aisle while you shake your head at my bad parenting. I also know that when I was younger and had just one precious child who… Read more »

EmilyReviewsCom
Guest
EmilyReviewsCom

I'm not sure how most schools work, but I know that in middle school and high school students would bring cash or else a check in to give to the lunch ladies. We didn't get a 'bill' mailed home to our parents or anything – we just had them send in a $20 bill or whatever and then when we were within a few days of running out the lunch lady would tell us to tell our parents to send in more. If this is how the elementary school system works too, I would think it is quite possible that the kindergartener… Read more »

chefaimee
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chefaimee

Angel Fire – go be a bitch somewhere else. Btw, our school district doesn't send any notice home until the account is already negative; not particularly helpful!

Bill Numan
Guest
Bill Numan

@chefaimee

AngelFire
Guest
AngelFire

 @chefaimee So I guess if you don't get a reminder that your mortgage is due, you don't have to pay the bank?  Part of being a parent is making sure that your kids are fed…not blaming everyone else for not reminding you to have money in the account.

Rob Gorski
Admin

@AngelFire @chefaimee you missed the whole point. The point was that sometimes things happen. When you're a special needs family, things tend to happen much more often. Many times these things have nothing to do with a lack of responsibility.

Rob Gorski
Admin

@chefaimee while I don't happen to agree with her opinion, please keep it clean and respectful. 🙂

kat13
Guest
kat13

I am glad my daughter isn't in that school!! However, we had several incidences that we paid, but my daughter wasn't served. I finally gave up on it as it is unreliable in terms I can't guarantee that my daughter eats what is served or if she is served at all. Her special needs assistance are super generous, so if she happens not to have any, they are sharing their plate and is it super nice of them, but they are not required.     So since there are many issues what she eats, I just pack it for her every day. It just… Read more »

dotdash
Member
dotdash

JenniferWhyNott and DeeBrake said such wise things.  As a parent and breadwinner, I *always* feel stretched thin, and things fall through the cracks.  Bills don't get paid, dentist appointments don't get made, meetings get missed, thank you letters go unwritten.  Yes, we all have to try, but we also have to forgive ourselves when things fall through the cracks — and we have to forgive others.  For every person in the grocery store who glowers at a tantruming kid, there are many more who wish they could help.  For every person who judges or criticizes, there are many more who… Read more »

Rob Gorski
Admin

@dotdash thanks dot. 🙂

HeatherESedlock
Guest
HeatherESedlock

I didn't read the others' comments on here so I'm probably going to repeat a few things already said. I have a tendency to be repetitively redundant anyway. :)As an adult with autism with two children on spectrum, I can *easily* imagine how someone can neglect to pay their bill. Oh, all sorts of situations raise to mind… including the ones mentioned directly in the blog. First and foremost in my mind when I read the original article this post is about "What if his parents couldn't afford it that week?" There are times when my pennies are so stretched,… Read more »

Rob Gorski
Admin

@HeatherESedlock well said. 🙂

dotdash
Member
dotdash

 @chefaimee Angelfire, you know what is sad?  I knew from your hard-edged comments that you were a dad, not a mom.   I'm not saying it's universal, it's just that most often, posters who come with that tough, unforgiving attitude are young and male.  And I apologize to all the many many dads out there who have just as much empathy and understanding as any mom.  It's just that somehow more men feel entitled to write freely with that tough-as-nails judgmentalism.   They should stop expressing themselves so freely until they have seen and experienced a bit more of the sorrow… Read more »

Rob Gorski
Admin

@dotdash @chefaimee that's very interesting. Most Dads don't speak up at all. It would be nice to find a balance.

Carlyoung
Guest

Due to illness, I have been largely absent this week from commenting.  I think that we all carry guilt like a huge steel cross member for some giant erector set.  We feel guilty for bills unpaid.  We feel guilty for things unsaid.  So many things.  To me, it is unconscionable for a child to go hungry.  The school shouldn't hold the child responsible for a debt the parent owes.  There has to be compromise to ensure that the child eats. Without knowing more, I would say that the district likely has a policy regarding this, and that the cafeteria worker… Read more »

Rob Gorski
Admin

 @Carlyoung I hope you are feeling better. 🙂

DLaubacher
Guest

So true…we do judge ourselves tough enough already.  That whole scenario just seemed so wrong – it does make you wonder how adults in charge could let any child, special needs or not, be left unfed (in a public school…where their tax money already goes for funding??)  hmmm/….

LisaGallegos
Guest
LisaGallegos

Our one job as special needs parents is to take care of our special needs children. The parents knew they were late, did they know that the child would be denied lunch? Probably not or maybe they did, was it their job to ensure their child ate? Yes it is….and who knows maybe this is a case of the child never ever eats.If you knew the parents weren't giving him lunch at home either would you be upset? Or is it just because the school denied him lunch that bothers you? I say this from experience because we've been late.… Read more »

oizys
Guest
oizys

I’ve been late to pay the bill.  It had nothing to do with being lazy and irresponsible and everything to do with being a single mother with 1 income and poor health insurance.  When the choice is taking a kid to the hospital or being a day late with the lunch account, what do you do?  My ex husband was laid off from his job.  My kids rely on me alone – there is no family to ask – for everything.  It’s a hell of a heavy burden.     When things were worse I was in the position of… Read more »

lostandtired
Guest

@oizys very well said and let me say that you are a true inspiration.

Carlyoung
Guest

As a father of 3 special needs kids, and the spouse of a special education teacher, I know all too well what it means to do without.  There have been months where I have had to decide between purchasing the medications used to treat my chronic illnesses, and putting food on the table, or paying the light and heat bill.  As parents of special needs kids, we judge ourselves harshly enough without someone else judging us as well.  Thank you Rob for putting this out there.

lostandtired
Guest

@Carlyoung thank you Carl for everything that you do to make the world a better place. 🙂

HeatherESedlock
Guest
HeatherESedlock

I think y’all are missing the point. The point was made, we do NOT know why the lunch bill was “not paid.” What if it was and the school’s lunch provider’s records were WRONG. How would you feel judging then from your moral high ground?Sometimes times are that tough. Be thankful you *have* the ability to WORK for a living. It’s no easy feat raising two special needs boys on a budget because I”m unable to work. My doctor refuses to let me work and believe you me, I miss it dearly! I could earn far more than what I… Read more »

DEBTHELL
Guest
DEBTHELL

so true

DEBTHELL
Guest
DEBTHELL

When I am out sleep walking in walmart I have been known to on multiple times freak out and wonder if I even brushed my hair. I say she’s fed and alive. I’m doing my job. That’s about all I can handle. I had no recollection of weather I paid the internet bill this month. I had to go look. I am so sleep deprived I’m in tears. I was in the shower and I have a damn rash from not bathing enough. Though I recall bathing.. but it’s not a priority. when I wake up it’s because she’s screaming.… Read more »

Kelli Stapleton
Guest
Kelli Stapleton

Nailed it Rob!

Aspiemom
Guest
Aspiemom

I have four kids, one with autism.  We get behind once in a while.  The school doesn’t let us know what is up until there is a negative balance.  We have no way to track what is in the accounts, although the kids can request a balance (they never do).  Also, a couple of our kids are old enough to get stuff off the ala carte table, so they can spend more if they want, which I have a problem with.  In any case, we get the notice, we send a check in, and the last day or two are… Read more »

lostandtired
Guest

@Aspiemom well said. 🙂

megenporter79
Guest
megenporter79

Ok, I just have to comment on this because I have been told multiple times that my daughter is going to be denied lunch if I don’t come back and pay THAT day. The problem is the freaking lunch lady never gives me the notice until my daughter is ten dollars in the hole, so if I innocently forget the check at home the day after I get the notice, she starts threatening my daughter with starvation! why not give me the notice when she has ten dollars left?! I give the woman $80 at a time, so you think… Read more »

lostandtired
Guest

megenporter79 you rock on with your bad self.  🙂

Kristy Mann Taylor
Guest
Kristy Mann Taylor

I’m glad I never saw the comment you speak of because it would have sent me over the deep end. In this life that was CHOSEN for us, it is so very easy for something to be “over looked”. To them I say: walk a BLOCK in our shoes and THEN you may open your mouth. Until then u

Lost and Tired
Guest
Lost and Tired

Amen

AliciaCross
Guest
AliciaCross

wow I have never hear of a child not getting a lunch because the bill instead pay but here in Ma. as far as I know all children a fed, even in the summer. I think that is so wrong, this child is too young to understand what is happening, I am sorry if that was my neno I would have a cow!!

lostandtired
Guest

AliciaCross That’s my thought as well. Deal with collections but don’t let the kid go hungry.

AngelaMcDonough
Guest
AngelaMcDonough

I have to say my son sometimes takes his lunch sometimes he buys it and sometimes he either forgets his lunch money or he gives it to other kids cause Seth my youngest is just gullibill that way but The school always lets him charge it and if he forgets to tell me at the end of the yr i get a bill for what he has charged but the have never never never deined him food My older son Cody forgot his once and they begged him to eat one of there lunches because they knew i was at… Read more »