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.
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.
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.
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.
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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 society through some sort of work. I wish I had a magic wand.
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.
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” to be what our society has deemed a “normal” typical 24
year old. I never know what kind of day we are going to have as I know you are
aware with your 3 children you can start off down one path and end up on
another by the end of the day or the road map can constantly change throughout
My husband and I had to redefine our definition of family
many years ago. We now have a wonderful support system in place with people “who
get it”! For those who have children
living with autism we ALL have 1 thing and 1 thing only in common…the label.
Other than that our journeys are each different. This is why blogs and websites
like yours and others are so important and crucial to survival, emotionally!
You need a place to ‘get it out” so to speak and allow others on ‘Similar’
paths to do the same and in doing so this now becomes your family, those “who
get it” and support you and understand your frustration, the ups and downs, the
challenges, thou we don’t live in “your world” or walk along “your path” we
each now for sure the challenges, frustrations, and disappointments along the journey. I often say, “God puts us where we need to be
at the time we need to be there with the people we need to be with.” We may not
understand it, we may even question it, but we always must remember to stand
tall and proud for what we believe and never give up or allow our energy to be
drained by events, words or opinions that, if we let them can become cement
blocks tied to our feet! If it, whatever “IT” may be doesn’t move us forward positively,
ignore and move on. What we go thought
today is preparing us for a tomorrow we are yet to know!
I’m working on an
article to go out on our blog Monday for you Rob. Blessings to you and your family
sending peace, strength and comfort for you as you travel along your path
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. Because of this approach, we have found out extremely important things like serious, life threatening food allergies.
The reason I use the words on this blog is because my purpose is to educate. I don’t look at my boys as labels and I look at a diagnosis, if needed, as a way of helping my kids through whatever it is they are experiencing.
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 helping people and personally saved many lives before suffering a major back injury that eventually ended my career.
I’m not sharing that because I’m want recognition. The point is that things are rarely as simple as they seem.
I worked 80 hours a week as a medic after my injury, in absolute pain.
When things got bad at home, I had no choice but to make the change to being a stay at home Dad. I did all kinds of things from building and fixing computers to consulting on projects, in order to make ends meet.
Do donations help? Absolutely. They help me to be able to continue what I’m doing. Donations not only help my family but they help me to help others as well. They help with server costs, software updates and the building of a better support community for others out there in need.
Through Lost and Tired, I’ve found a way to help people, even though I can no longer run as a fire/medic. I’m also teaching my kids that importance of show compassion and helping their fellow man, regardless of our own personal struggles.
Of course I want to keep building this site. Of course, it’s nice to receive all the awards I have in recognition of my efforts……..but it’s not about awards, or having a popular site.
With this blog, I’ve found a way to not only emotionally survive what I’m going through anyway but also help my family and others as well.
I’ve built myself into a really good position with this site to be able to partner with companies that want to help or get good PR. Because of what I do, almost a dozen people now have tablets for their kids, that wouldn’t otherwise have been able to afford it.
Because of what I do, I’m able to give away gift cards for apps that can be used to help children on the spectrum.
I’ve built a support forum in order to help even more people and families connect with others that share similar commonalities.
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 all.
I never wanted to be in this “club”. I don’t believe any of us does. Until my son’s diagnosis I was alone. I had no explanation or
understanding of why my experiences as a parent were so much different
than others’. His diagnosis was like a physical blow, and I will grieve for a long time to come. But now that I have joined the “club”, coping on a daily basis has been made easier by the simple fact that I am not alone. And blogs like yours reinforce that. Blogs like this are where I can turn to for understanding, solace and advice. I feel a sense of community, and I can relate to your experiences, your fears, your exhaustion, and your love for your children. I love mine too-that love and determination to help him is why I sought out help for him and eventually wound up in the club.
Please keep doing what you’re doing, and believe that you are doing the right thing. You are helping so many people. Those of us in the club see the naysayers and the trolls for what they are.
@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
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.
myopinion32 thank you very much for share your story and you support. 🙂
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 tone of “something has to give” or “someone has to do something about this”.
2) You chronically post about how dire your financial situation is. You can’t afford gas for the cars, you can’t afford to go anywhere or do anything. Again…no solutions are discussed. Readers are left with the feeling that you are indirectly seeking donations (by the way, I love your brand new bright orange “DONATE” banner at the top right).
To the outsider, the answer is simple. GET A JOB! If your wife is for some reason so incredibly debilitated that she cannot physically get out of bed to help the family so you can work during the day, you could get a night job. There are tens of millions of single moms and households in America that have child care issues, and work overnight shifts at a variety of places. You could stock shelves at home depot or walmart. You could work in the food industry. There are tons of places that will hire you for shifts when your family is asleep. YOU CANNOT KEEP SAYING THAT YOU HAVE TO BE A FULL TIME STAY AT HOME FATHER. It’s a really poor excuse that a ton of others have overcome. Would you be tired? Of course. Would it suck to take care of the family by day and work at night? Yes. But you would now have some extra money to take care of your family properly!
The other thing that is a bit unusual is how you almost WANT to put a medical diagnosis on everything. I have two children…one on the spectrum, and one that’s not. It amazes me at how often behavior that you would think is autism related is really just normal kid stuff. For example, your little guy didn’t want to go to school because another kid in his class is having tantrums. RIGHT AWAY, you post that it MUST be PTSD. It can’t be your kid just being a kid, because there cannot be normal behavior in your house. Let’s make another doctor’s appointment to get the PTSD documented, and further stigmitize the child while wasting time , money and gas in the process. This is just one of MANY examples that you’ve posted over the years. Everything needs a trip to the doctor, specialist, or hospital and involves rare, arcane and sometimes unheard of diagnoses.
Listen: there is no doubt that your family has some hurdles to cope with. You are blessed in many ways, but you obviously have your hands full. Wanna know what a real man does? Suck it up, work 27 hours/day, do what you have to do for your family, and stop the “poor me…someone has to do something” nonsense. Things will NOT get better for you until YOU make them better. That’s just a hard fact of life.
And if you don’t like criticism or oppositional points of view, you really shouldn’t host a website for the world to see.
@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 and what they are going through IS the parent as we live with our children day to day. We’re probably better at seeing things than doctors themselves at this point. I am fortunate. I don’t need financial assistance and have a good job. HOWEVER when my son was younger and going through more developmentally speaking, I lost a job because he was kicked out of daycares or constantly having issues that caused interruptions to my job. Well that does suck and I’m lucky I had one. I paid 20,000 out of pocket (b/c I do make a decent living) paying for his therapies that insurance would not cover – I was allotted that luxury b/c I had the financial means and not everyone does. My son is now at the point of being mainstreamed with some ongoing issues but I feel his early intervention therapies paved the way. I am very involved in the autism community and have seen so many cases where people have more than one child on the spectrum and they are BURNED OUT and not as fortunate as I was. If the man didn’t get any sleep, you’d see his health go downhill fast – especially for a stock job at wallmart you say? If he worked part time, he would not get benefits and not nearly enough to sustain – the system is jacked up in that way – if he worked, he could lose any benefits he’s getting that he desperately needs – the ends would not justify the means if he lost medical disability for the kids b/c he was working part time at night…it’s so easy to sit back and judge isn’t it? If you could get in there and take over for 1 week and have actual solutions for him AFTER that point, I’d have more respect for your heartless post. I have ZERO respect for it right now and people like you repel me to no end. I am so happy my 2nd son doesn’t have the same issues. No one understood a thing when it came to my spectrum son when he was younger and at his worst. I lost friends..my parenting skills were judged and you know what? The HELL with those people. If I had more than one? I’d have a mental breakdown and fully admit this. I have so much admiration for those I see that deal with much more than I had to. I don’t know how they keep their sanity and will always carry much respect for them. As for the donations, there’s no law against him asking for help and I don’t think that he’s taking advantage of a thing. You are obviously free to skip it.
Anyway for this mother that has one on the spectrum and one not, I felt very compelled to let you know that you are NOT in this man’s situation and it’s very VERY easy to judge when you’re not. I used to be like you at one time. My blinders are long gone after my experience as well as those I know and what they go through. I don’t have extra money to donate but I will always be supportive to those going through this. My prayers are with them. It’s mentally and physically exhausting. And quite frankly, I don’t care if YOU don’t like criticism to what I feel is a post rather brash in tone. I personally feel you are a judgmental jerk.
@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)
myopinion32 no need to apologize. You were very well spoken and my wife and I were cheering you on. 🙂
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).
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 see that they’re not alone and that we’re all in it together and need to support one another.
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 traumatic, there is a culture of disbelief in the UK of refugees as most people here have literally never seen a war or poverty. This culture causes those who come to our country to seek safety to suffer more than is necessary for longer than is necessary, and for their mental health to deteriorate not as a result of what they have left behind but more from the Asylum system and press and ignorant opinions of people here. We work so hard to educate and to help overcome this ignorance and give people a chance to meet our clients and to see that the are real human beings who were just dealt a different hand of cards in their life. MOst people once they see and meet someone are changed forever.
Education is the key to compassion. your blog is great as you are seeking to do this even though you have so much else on your plate and so many other things to achieve everyday. Be encouraged because even if you are able to encourage one other parent and improve their life through this blog then you have succeeded.
Thank you Sarah x
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.
I hear ya and understand! You’ll not get any judgement from me just support!
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 other parents.
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
AuntMaggieRocks thank you so much for your kindness and support. I have tears in my eyes right now. 🙂
Well said dude
AMDuser thanks 🙂