Autism, Aspergers, Rob Gorski, Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia, Google+

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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. 

About the author

Lost and Tired

I'm Rob Gorski and I started this blog in January 2010 as a means of sharing my family's real life journey raising 3 boys on the #Autism Spectrum.
It's important for people to understand what Autism can really be like and the impact it has on the family. We aren't a TV show and there are no actors. This is our struggle, our journey...and it's all true.

I am "Lost and Tired" and
this is "My Reality #Autism".

Permanent link to this article: http://www.lostandtired.com/2012/09/14/i-dont-need-your-help-to-feel-guilty/

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  • 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 work and couldnt just drop everything to take it to him he would not and i had to take it but my point is they never intentionaly at our school district deinie a child food In the summer time our middle school offers FREE LUNCH to any child under the age of 18 5 days a week

  • http://www.lostandtired.com/ lostandtired

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

  • 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!!

  • Lost and Tired

    Amen

  • 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

  • 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 she could give me some notice! Ok, thank you for giving me the opportunity to rant about this :)

    • http://lostandtired.com/ lostandtired

      megenporter79 you rock on with your bad self.  :-)

  • 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 paid up.  Why was this kid denied food, when the bill was just a few days behind?  That’s weird.  I find that people who get overly preachy are directing attention away from their own shortcomings…they would be well served to get over themselves and join the world of mortals…

    • http://lostandtired.com/ lostandtired

      @Aspiemom well said. :-)

  • Kelli Stapleton

    Nailed it Rob!

  • 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. No time for a shower. When I go to sleep it’s because she’s been screaming for 5 hours and finally passed out at 5am and I’m too tired to do anything but survive. People have no damn idea.

  • DEBTHELL

    so true

  • 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 manage to scrape together every day. I’m lucky though–my children DO qualify for free/reduced lunch program so I never have this worry. however, I do know at my son’s school (I homeschool the other one) that they NEVER let a kid go hungry.. the staff of the lunch program gives to the child whatever the child needs, regardless of “Cost” and let the parent settle up later. They often have “extras” that go to waste anyway. And no, it’s not too far fetched for a parent of an autistic kid (I have classical autism myself) to think that his or her child was “picked on” by adults because of their autism alone and refused food. It could be as simple as because the child had autism, he or she could not adequately explain the lack of money situation at home, or “my mom gave me the money but I lost it” or what have you that other typical children can do. It may be straight-out descrimination.The fact is, we do NOT know. NONE of us are in that child’s home to know what the parents are like and what the school did or didn’t do. Why is it so easy to judge another based on our own selves and actions? We’re not all alike, we’re not all capable, especially in this economy. If you’re family has three sources of income, get on your knees and thank God right now–I know folks who are ACTIVELY looking for a job and can’t get one. And are in desperate need of one.  JUST ONE. Be thankful not judgeful that you have a better life than others.

  • http://www.whynotfathers.com/ Carlyoung

    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.

    • http://lostandtired.com/ lostandtired

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

  • 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 deciding who got to eat – the kids or me.  I was already walking to work since gas cost too much.  THAT is a hard hard place to be in….I hope the critical folks on this comment thread never have to make it.

    • http://lostandtired.com/ lostandtired

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

  • 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. Regardless of all the stuff we have to do, the bills we have to pay…our number one priority is our kids. Has nothing to do with autism or special needs or any of that….its about a kid! 

  • http://steasetonblog.blogspot.com/ DLaubacher

    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/….

  • http://lostandtired.com/ lostandtired

     @Carlyoung I hope you are feeling better. :-)

  • http://www.whynotfathers.com/ Carlyoung

    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 needs additional training.  Now where did I put the phone bill?

  • 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 and suffering that life brings to us all.  

    • http://lostandtired.com/ lostandtired

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

  • 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, they become invisible.  I am responsible with my money and pay my bills and try not to add too many bills so that I can live within my means. I'm not perfect in that regard at ALL but I can see how it comes down to a choice of "buy milk and bread for the week for our house or pay this school lunch bill?" Maybe they don't qualify for the reduced lunch bill or free lunch program, etc but that doesn't mean they're rich and so may be facing a choice like that.Anytime someone judges someone based on a narrow set of details, I cringe. I cringe even when I do it. I'm not perfect and I judge people all the dang time! "I wouldn't treat my kid that way!" or "Sheesh, what was she thinking when she looked in the mirror this morning? Gee, I ain't gonna wear clothes that fit today"? Things like that. They're judgements of others. Who knows, maybe those are the only clothes the woman owns to her name because her house burned down last night. Who knows.. maybe that mom screaming at the top of her lungs is screaming because the child in question has RAD and is slowly driving her mad and manipulating the situation so that is exactly what I think about the mom. We never know what the full circumstances are, even when we DO know the person involved. Thanks for the reminder!

    • http://lostandtired.com/ lostandtired

      @HeatherESedlock well said. :-)

  • 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 understand and feel compassion.  
     
    (Re the initial new report, I have to think that was a miscommunication.  I know no one, in all my travels through many school systems, who would knowingly withhold lunch from a child.  I know many instances of miscommunication, however, especially with children who are young, shy, or otherwise less able to make their needs known.)  

    • http://lostandtired.com/ lostandtired

      @dotdash thanks dot. :-)

  • 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 takes away that one worry away from my head. 

  • 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

      @chefaimee

    • 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.

      • http://lostandtired.com/ lostandtired

        @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.

    • http://lostandtired.com/ lostandtired

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

  • 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 just forgot or didn't realize he was suppose to give the money in his backpack to the lunch lady? I can see this happening even with a NT child. I know it was really common even in high school for kids to forget to tell their parents that their account was low so then they completely ran out. When that happened we werent allowed the regular lunch but would instead get a pb and j with a plain white milk until we had money back in our account. I think all schools should do something similar especially in elementary school. 

  • 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 wasn't yet mobile, I carried a chip on my shoulder about how I was going to be the great parent. My kids would never act that way because I was going to parent them in a way that would make them perfect. Boy was I WRONG! As I have matured and come to know Christ, I have mellowed out with my judgement. I try to be understanding of what is going on in others lives by imagining myself in their shoes. One of the reasons I enjoy your blog so much is because of the authentic honesty. You are not afraid or ashamed to write your true feelings. It is also clear that you love those boys more than anything else in the world and for every ounce of sanity you lose in parenting them and their needs, you gain an ounce of love and compassion with their successes or stinkin' cuteness. I too never know what day of the week it is. When I sign my kids in at church or the dr. office I have to stand there and think about who I am giving information for. What is left of my brain is mush because I have 4 special needs kiddos and my husband and myself have our own special needs. There are many days that all I can do is just survive while waiting for the other shoe to drop. But then God in His infinite grace and mercy let's me watch my lil guy run down the street chasing after the dog with his back pack on. He is so stinkin cute. I get to have a heart to heart with my oldest about why we are trying to keep her safe and protected from the evils of this world. I get to see how my lil girl can do something in a workbook that is 2 grades above her. I get to see my kids help each other if only for a second. All of these things give me hope. Hope that someday we will all gather as a huge family for the holidays and just because dinners or at least I will have survived their childhood without being committed into the institution and I finally have some peace and quiet. Even though I would probably be bored and need something else to do!

  • 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 hair dyes and brand name sneaker kind of kids… but if they were, perhaps THAT would show me as a bad parent when they dont have a lunch but have all that other stuff… i dunno, just saying. im trying to raise them with level heads and an understanding for responsibilities, even though i have an ASD child i raise the twins the same. but if my phone gets cut in the process of raising them, for not paying the bill, i wouldnt be surprised…as for lunches…. my kids pack lunches, it is far cheaper, but in the event a lunch is forgotten, the staff will call and inquire about buying a lunch at the cafeteria and paying later… then calling to remind you when you forget to pay. the cafeteria probably throws out more food than what a whole classroom could eat, there is no reason why the child should go hungry. unless the parents routinely IGNORED (not forgot) the bill and the child was  NOT being cared for in other ways, then other than that, it is purely a case of OOOPS was that TODAY?if i worked there and saw that hungry kid with no lunch i would share MY LUNCH with him, but that is just me. and i can afford to do without a half a sandwich and a bowl of fruit cocktail.

  • 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 their children?!?
     
    How arrogant is it to assume that because you were delinquent in depositing money, someone else will pay for your child's lunch. While it's not the child's fault, the funds have to come from somewhere.  Where does the school draw the line?  5 free lunches?  10?  50?  Who pays?  The other parents?  The principal?
     
    If people have children, they have an obligation to care for them.  If they don't have the money for school lunches, they should make alternate arrangements with the church, social services, or send their kid to school with a bag lunch.  To do anything else is irresponsible!!!
     
    And to theorize that the child in this story was treated differently because he has special needs is crazy.  Do you really think the school would have provided free lunches to a non special needs kids, but they intentionally treated this child differently because he's autistic?!?  Let's be realistic.
     

    • 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 your child, as they have no clue what to do about the tantrums and how to avoid them. Private daycare runs on large $$$. 
       
      And being realistic, whatever your child has, must not be autism as you clearly don't understand what it take to have just one child on the spectrum!

    • 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 old and let me tell you something you might not know. I have two children with autism. One is diagnosed with Asperger's, ADHD, Oppositional Defiance Disorder, and Bipolar disorder with psychotic tendencies. My other child has classical autism (rediagnosed after previously being diagnosed with PDD/NOS) and ADHD. I have my priorities straight. My children come first and formost. Needs come before wants. I was raised correctly. My parents did their job in making sure I understood how to budget money. Every month, my father still calls me and asks me "Have you paid your bills yet?"Why? Because I have a habit of figuring out what the bills WILL cost, and spending the difference first before actually paying the bills and my math skills are just not good enough for that to work out the right way as planned. For some reason, just because I went through $50 in gas the previous month, doesn't mean I won't go over my $100 budget for gas this month.. so that happens. And then up pops a car repair bill that I don't have any savings to dip into, and so on. You can see, being the obviously intelligent person you are, how that can snow ball into not having enough money for other things. So, I experienced huge problems in July that I'm just now getting under from here in September. By October, I'll be back on track.Does that make me a bad parent? You betcha. It does. I'm supposed to be responsible enough to make sure the bills are paid FIRST and savings are accumulated if possible before buying whatever else. (In July, I bought a few things that were not necessary). So yep, I'm a horrible parent for that. That *is* my fault. No one else. And no, the school shouldn't be required to feed my kid. No, taxpayers shouldn't be required to feed my kids.My point? What does blaming have to do with anything when a child is standing before you, hungry, and sometimes without the cognitive function to understand "there's no money in the account because you have an irresponsible parent?" A child cannot eat your blame for lunch. And the point is still the same as the OP: we do NOT know that the parent in that original article was as irrespossible with money as I was/am. So? Your point becomes even more invalid. and these are my words ™

  • Chloe123

    Rob, you and Lizzie are AWESOME, AWESOME parents!

  • Kibblet

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

  • http://www.danoah.com/2012/03/death-knocked-and-i-had-to-answer.html/3/ Grandma K

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