What judgement is like for a special needs parent



As if I didn’t have enough on my plate to deal with, I’m finding myself on the receiving end of some rather unpleasant and heartless comments, especially lately. 
If I said that these people don’t both me, that wouldn’t be quite true.  Am I devastated by what these people say? Not a chance, but that doesn’t mean I don’t feel the need to address these people.

To me, this is a symptom of a larger problem.

That problem is a lack of awareness, compassion and understanding for what families like mine and yours are going through on daily basis. 

Lately, some of the comments I have received have been very hurtful and accusatory in nature.  I’ve committed to not censoring people’s opinions and comments so you can scroll through and find what’s been said, if you’re interested. 



I know that by putting myself out there like I do with this site, I open myself up to these types of situations and that’s to be expected.

Honestly, I haven’t run across this too often, which I think is a testament to the humanity of my readers. 

However, at times there are people who can’t wrap their heads around what my family is experiencing and so it’s easier for them and keeps their world nice and neat if they assume that our story is either exaggerated or simply a ploy to get attention.



While I can generally ignore these people, sometimes it’s hard to do that. 

Right now, when things are this bad, it’s a bit harder for me to roll with the punches, especially when the punches are so far below the belt. 

If I could make these people not only hear but understand and embrace just one thing, it would be this.  Sometimes,  in life things are messy and people suffer.  Special needs families are a perfect example of this. Quite often, we find ourselves experiencing things that even we can’t wrap our heads around.

What I’m trying to do with this site is find a way to articulate these experiences.  That’s not an easy task, especially when dealing with a complex family like mine. 

However, simply because it seems dramatic or unbelievable doesn’t mean that’s the case. 

I bet you that if the average Autism parent tried to describe what it’s like to experience their child having a full blown meltdown, the average person would have a really hard time truly understanding how impactful a meltdown can be on all involved.

One of the reasons I wanted to share the documented issues with Gavin and the behavioral problems we faced, was because I wanted to help people understand what not only what our kids went through but the impact these meltdowns have on the family.  While most of what Gavin has are (or at least were), tantrums and not meltdowns, the principle is sorta the same. 

Meltdowns are very often extremely loud and can also be violent, lead to selfinjurous behavior and can sometimes go on indefinitely.  This is not the fault of the child at all and are usually a result of sensory overload.

Tantrums can present the same way. The difference is more under the hood.  Tantrums are usually a means of manipulation.  A child wants something and can’t have, they throw a fit or have a tantrum as a means of trying to get what they want. 

Look, nothing I do is meant to make me look like some kind of hero. 

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Those of you that know me, know that in fact, I feel quite the opposite. I don’t think and never have thought that I was some kind of hero. 

I’m doing what I would think any parent would do, if presented with the situations that I’m presented with.
I’m simply a father and husband.  The only difference between me and a lot of other people in these types of situations is that I have chosen to write about my experience, that’s it.  Most of the time, these things go on behind the scenes and without the world knowing.

I don’t want people to feel sorry for me, I simply seek to raise awareness about our personal struggles in an effort to help educate others as to what families like mine may be going through. 

The fact that so many parents have reached out to me in order to share how they are so comforted by my site, tells me that I’m accomplishing my goal. 

You don’t have to like what I have to say.  You don’t even have to believe what I have say. My mission isn’t to convince you that what I’m going through is true.  Those people out there experiencing similar things can easily relate to my posts and find comfort in knowing that they aren’t alone. 

One of the things that I know so many parents like me experience, is judgment and ridicule from people who simply don’t get it. 

I don’t honestly know why people have to share their judgmental opinions.  I mean, it’s someone else’s life and has no impact on yours, whatsoever and even if it did, at the end of the day, we still have to contend with these challenges while you can return to your life.

Simply because you have never experienced something doesn’t preclude others from experiencing those things, every single day.

It doesn’t make it any less real for those of us going through it, even if you don’t believe that we are really experiencing these things. As an example, perhaps your family is perfectly healthy. That’s really awesome and I’m happy for you and yours.  That doesn’t mean that mine is.

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There are families out there, like mine,  that have to deal with these types of problems all the time, while also having to face thoughtless, heartless and judgemental people, who feel need to share their opinions of your parenting. 

It happens online, at the grocery store, at the doctors office and in the educational environment.

Families, like mine, have to make decisions inside of impossible situations. Just look at what we had to do with Gavin and moving him out of the house. You are sorely mistaken, if you think for one second that any part of that was easy or continues to be easy.

It’s nothing but pain and heartache.  Unfortunately, it’s the lesser of two evils and the only thing we could do in this particular situation that served the greatest good for the largest amount of people.

These decisions are made because we have to do what we know or at least think is best.  I can’t tell you how many times we have to pick the best of the worst options because there simply aren’t any good options to choose from.

You need to understand that we and other families like ours, are working without a net and with absolutely no instructions. Families with special needs kids, very often don’t even have the luxury of making mistakes because the costs of making a mistake are simply too high. 

With my family’s situation, I had become a stay at home Dad out of necessity.  Lizze is not capable of caring for the boys with all of her own health problems. 

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I have to be home.  I have to be the one to drive to appointments, most of which are out of town.  I have to deal with the constant, never ending flow of autism and health related struggles that my kids face.  Things as simple as making dinner is exhausting because I have to cook at least 3 different meals, often times more than  once, because of either food related allergies or sensory processing related food issues. 

Ask any parent that deals with these feeding issues.  Our kids will not eat when they are hungry.  They will go hungry before eating anything that’s sensory offensive. This is a very difficult situation that we face every meal of every day.

Don’t even get me started on the nightmare that often ensues with simply trying to help them through the sensory assault of wearing clothes. 

Too often, even well intentioned people on the outside, make comments like, just go get a job or your kids just needs a firm hand.  One of my personal favorites is, just make one thing for dinner, if they’re hungry, they’ll eat

Don’t you think if it was that simple, we would already be doing that?

I would love the ability to just go get a job.  I crave the financial security for my family and even the adult contact that would come along with working outside of the home.

Unfortunately, in my case and the cases of many others out there like me, it’s just not that simple.

I’m not asking that you believe me.  I not even asking you to understand my situation or the situations of other families like mine. I don’t need your support or even your respect. 

What I am asking is that you keep your judgemental comments to yourself. Neither I nor any other family out there needs to hear your unsolicited advice or negative comments on what you perceive is bad parenting or misbehaving kids. You can’t always take things at face value and in many cases, there is so much going on beneath the surface that you don’t understand. 

Treat people with basic human dignity and just keep your negative thoughts and comments to yourself because you have no idea what someone else is going through and how your comments may impact what may already be a very challenging situation.

Why kick someone when they are already down? Just because you feel the need to say something, doesn’t mean you should. 


This site is managed via WordPress for Android, courtesy of the @SamsungMobileUS Galaxy Note 2 by @Tmobile. Please forgive any typos as autocorrect HATES me. 😉

Check out my #Autism Awareness Store to find really cool and unique #Autism Awareness Clothing and Accessories, designed by me. 😉

For more ways to help the Lost and Tired family, please visit Help the Lost and Tired Family.



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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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AMDuser
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AMDuser

Well said dude

lostandtired
Guest

AMDuser thanks 🙂

AuntMaggieRocks
Guest

Rob,
I recently started reading your blog and posting your posts via triberr. I love your family and your story! You have so many hurdles and you’re jumping each one. I support you, and I can’t wait to see what great things come for you. Take care hun, your family is in my prayers. <3

lostandtired
Guest

AuntMaggieRocks thank you so much for your kindness and support.  I have tears in my eyes right now.  🙂

Mel
Guest
Mel

Rob, I have been reading your post for quite some time and love hearing about your family. Our oldest has RAD, ODD, and ADHD and I can feel your pain sometimes and relate to some of the things you post, especially about the meltdowns. Special need parenting is hard and unless people have been there, most people just cannot comprehend what behaviors can emerge from your child. I love my children so much as I can tell you do as well. Keep strong because your writings are helping others see what many are going through and being an encouragement to… Read more »

Sylvia
Guest

I hear ya and understand!  You’ll not get any judgement from me just support!

Janis
Guest
Janis

A friend shared this post through FaceBook.  As you indicated, other special needs parents will understand meltdowns or, for the Tourette world, “rages” or “neurological storms”:)  I need to share this as well because I know some people currently who may get comfort from your post or, at least, will see that there are many other people struggling with the impact of their child’s medical/special need on the family unit.  At times, it does feel like no one understands….so I appreciate your post.  Thank you.

SarahChierico
Guest
SarahChierico

Hi Rob This post is great and i totally understand how you feel. Many people have no idea what suffering is like as they have never experienced it and so are completely unable to put themselves in someone elses shoes. It is a real sign of immaturity. I read your blog as i have a boy with ASD/SPD but where your post here really strikes a chord is in my work life.  I work with Refugees and often i find that local people who have never travelled outside of our westernised bubble have no idea that it is possible for someones life to have been so… Read more »

LifeInTheRaggyDollBin
Guest

This post has made me so angry – not at what you have written, that’s fabulous but at the other people that judge you.  I have to face these kind of comments on a daily basis too and like you I let them go over my head but they do hurt.  I’m forever having my parenting skills judged by people who don’t know or understand my situation.  The people that think that because my children don’t openly display their autism that it mustn’t be there, or that they have been misdiagnosed. At least blogs like yours (and hopefully mine) let other parents… Read more »

Julie Sparks
Guest

Hang in there Rob.  There are always haters out there.  I have experienced some of that as well.  I do enjoy you reading your stories.  And to someone who thinks a meltdown is like a tantrum, well all I can say is that being broadsided in a car is always a traumatic experience, but when you are hit with a bus (an autistic teen or preteen) it is very different from being hit with a car (a toddler).

CharlieOz
Guest
CharlieOz

While I’ve never been cruel, I’m certainly one of your more inquisitive supporters that I’m sure this post is directed at.  I’m not the typical “Rob cheerleader” that blindly puts up supportive messages to every one of your posts. If you were to step back and take an impartial view of some of your posts, you’d see what some others see: 1) You constantly speak about how dire your housing situation is…homicides, shootings, and all kinds of bad things happen in your neighborhood.  You never seem to formulate a reasonable solution to this…you just leave the post hanging with the… Read more »

myopinion32
Guest
myopinion32

@CharlieOz  – Sorry but you are a judgmental ass. So much of one, I felt compelled to say something. I can completely respect opposing viewpoints but this one is over the top and so out of line. I have 1 child on the spectrum myself and 1 not. This guy has THREE. Someone needs to be a stay at home parent for that. Why? Because federally funded daycare centers will not take these kids. Each child is very unique and differing on the spectrum as well as their satellite disorders. The best person that can tell you about their child… Read more »

myopinion32
Guest
myopinion32

@CharlieOz- I also love how you say you’ve never been cruel and refer to yourself as merely an “inquisitive supporter”…lol. An inquisitive supporter would ask questions – nothing you said was supportive! You made judgements pal. You were very cruel in my eyes. I shouldn’t wish bad things but I wouldn’t be upset if 2 more landed in your lap for the sake of karma.  (Sorry Rob..I have been in so many situations of judgment that I lash out when I read things like this)

lostandtired
Guest

myopinion32 no need to apologize.  You were very well spoken and my wife and I were cheering you on.  🙂

myopinion32
Guest
myopinion32

Hi Rob, 
I felt lost and tired myself at one time…this phase will pass as they get older – hang in there and keep writing. So much of what you say resonates with me and I just have one child on the spectrum. There are many that just don’t have a clue. My prayers are with you.

lostandtired
Guest

myopinion32 thank you very much for share your story and you support.  🙂

jaybee
Guest
jaybee

Thank you for putting yourself out there in this blog. Thank you for showing others what it’s really like to parent children with Special Needs. I have a son, 6, who was recently diagnosed with ASD and ADHD. It’s amazing how cruel and heartless people can be. I’m dramatic, ridiculous, a liar. Things can’t possibly be as difficult as I make them out to be. I can’t possibly worry about my son regressing and losing skills, about his future, about what will happen when I die – what will happen to him. I’ve blown this way out of proportion, after… Read more »

lostandtired
Guest

@jaybee  wow,  that’s really inspiring.  I love your outlook and for what it’s worth, while I wish this club didn’t have to exist, I’m glad to have people like you to call fellow members and friends

lostandtired
Guest

I wanted to add something to the mix here.  My goal with this post was to not only provide insight into my family but also the countless others dealing with their own personal struggle.  @myopinion32 was so right because we need to remember that everyone on the spectrum is different and can present with different parenting challenges.   As far as getting a job goes, I have one, I write.  I’m currently in between freelance jobs but I’m working on it.  For the record, I’ve paid my dues.  I was a fire/medic and damn good at my job.  I loved… Read more »

lostandtired
Guest

I also want to touch on something else.  The concern brought up over diagnoses.  For the umpteenth time, read the post again, I never said Elliott had PTSD.  I was trying to explain what he was acting like.  I said PTSD like symptoms.  Get over it already.   Yes,  the boys have diagnoses.  Do we seek them out? Only if necessary and in their best interest.  We follow the advice of our pediatrician and the boys therapists.   In my opinion, if something is wrong or seems wrong, as a parent, I want to make sure everything is okay.  … Read more »

Kimberly McGuiness
Guest
Kimberly McGuiness

Rob, thank you for your post and creating this blog and all your efforts which go into keeping it going and what it is today, it is always greatly appreciated!  I just had a conversation with a good friend of my other day about people “that just don’t get it” as you know my daughter, now 24, is living with deaf autism. Some days she is more deaf than anything, some she is more autistic than others some days she is a combination of the 2 and whatever else triggers her that day and then there are days she “seems”… Read more »

Cecilia Boyle
Guest
Cecilia Boyle

Keep posting please! It helps so much. I stopped trying to get people to understand, I just assume now that if they are not actually raising a special needs child, they cannot understand. But I also take people for their word when they are struggling with a different life situation, if they tell me they are struggling who am I to question that.

Lise Almenningen
Guest
Lise Almenningen

My boys are 18 and 20. They are both on the Spectrum, but in very different ways. Getting acceptance for the fact that some serious was going on was so much easier for the outspoken and at times very rude son than for the quiet (supposedly lazy) one. I’m on the Spectrum myself and feel certain that has brought extra Challenges into their lives but also greater acceptance. What I find most difficult to deal with is the lack of friends. They both want to be accepted and liked for who they are. Both of them want to contribute to… Read more »