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(originally written & published on November 20, 2011)
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I think Autism Daddy needs to get a thicker skin…. I mean if I’m gonna put myself out there and let y’all in on every aspect of my life, I have to be open to some criticism right? But a comment on one of my blog posts really bothered me yesterday. It was written anonymously by a long time Autism Daddy follower. She references lots of different blog posts so I’ll add links to everything so you can follow along. I’ll put the whole note in its entirety…and then I’ll break it down and defend certain points. Before we begin you should know that she added this comment on my infamous blog post (READ) about who should do the dirty dishes….
Ok, here goes….
“Autism Daddy I’ve been following you since the beginning. From the early pictures you posted that could have come directly from my house. My youngest son is non verbal and on the severe end of the spectrum, the updates you write I could have written myself, I can 110% relate, we are the same age and my son is also 8. The only difference is my son has a seizure disorder and we have an issue with his weight, on the other end, he’s a BIG eater and overweight.
I have older children though, one on the mild end of the spectrum, and typical kids. I work part time as a caretaker for the elderly. I have one day off but that is typically when I schedule one of the kids visit to the doctor/dentist/ neurologist, etc., so in reality it isn’t a “true” day off.
I noticed you talk about the expenses Kyle incurs, from the dentist to the co pays to the cookies he eats…but then I see you talk about how you and the wife go out and spend money without complaining.
If money is a real issue, a supportive wife would find a job, somehow, some way. There are plenty of mothers hours jobs, or babysitting or caretaking like I do the little I bring in helps tremendously.
The dishes I understand that’s not an everyday thing and I know how worn out I feel some days with 4 kids, my severe non verbal and still not potty trained som, AND my job but if she has 5 free hours each day, it really wouldn’t kill her to take 1/2 hour a day to do them.
I know the stress you are going through right down to the school issue, I’ve been there!! But you got it right in another blog post (READ) when you said you and the wife are selfish- Chris above made an excellent point about how the dishwasher should have been handled. I can’t imagine waiting until my partner and I could go shopping alone together, it would never happen!
I know you are entitled to respite use it then and recharge for Kyle. You find sitters to go out to concerts so you two need to get your priorities straight.
I am where you are, our out of pocket dental bill was over $8,000. From when my son was 4, we’re still paying. Now I read you took 2 Days off bc of kyles school issues (READ) ? Why? Can you afford that? And is this really all about Kyle or is it all about you???”
Ok, so let me start off by saying that we are a middle class household of 3… we are not lower middle class, some might say based on my salary that I’m upper middle class but I live in one of the most expensive areas in the US so it washes out and bumps us back down to mid-middle class in my opinion.
We are very fortunate that we do not live check to check and have a decent buffer so if I were to lose my job today we’d have enough $$ to pay the bills for ___ months. I know that we are alot more fortunate than many….
All that being said, why can’t I bitch about how much things cost for Kyle and still go out and blow $ on a concert or a night out a few times a month? Again, I’m bitching about costs for Kyle but I can honestly say that we’ve never denied him of a therapy or a dr visit or anything because of money if we thought it would be worthwhile.
I’ve listed in another post (READ) all the things we’ve tried on Kyle with little or no success. One of those being the super expensive GFCF diet and I bitched about the costs for the 12+ months that he was on it, but we did it. Another time we spent over $2000 to rent a hyperbaric oxygen chamber for one month in our home. I bitched alot, and of course it didn’t help, but if it did help we would’ve probably bought one and I’d be bitching about that too.
And recently I posted all the things that we pay out of pocket for… (music therapy, swim lessons, gymnastics, OT, ABA, etc, etc, etc) and I bitch when I write every f-cking check, but I still write them…
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I’ll readily admit that sometimes we weigh the cost of something to see if it’s worth the cost by how much Kyle will get out of it. Should we pay for a third hour a week of at home ABA therapy at $25 an hour? Will that 3rd hour make a HUGE difference in his life and/ or his development? Or should he go to that special needs “movement” class at the local Y on Thursday afternoons instead that only costs $10 per hour? What would Kyle enjoy more?
And since we’ve had little or no success with all biomedical treatments I will readily admit that cost plays a part in keeping us from trying a new one… but if I had first hand knowledge from an ASD kid in our life that we know personally HUGELY benefitted by being on this supplement or doing this treatment I’m sure we would dive in and try it no matter what the cost… and I would bitch about the costs…
So I’m never denying Kyle of anything if i think it will benefit him, so why can’t the wife and I go out and have a good time as much as possible if we can afford it? Why can’t we be selfish? Listen, I’m not a husband who drinks or smokes. The habit of smoking costs a FORTUNE by the way. I don’t disappear on Saturdays to play golf (which is very expensive), I don’t go out after work partying very often, or play poker or anything like that.
For the most part the wife and I like to do things together. Movies, dinner, concerts, going out to dive bars to see rock bands, etc. What’s wrong with that? And there are times where we ask ourselves… “Is this sitter worthy?” meaning is this event worthy of paying a Kyle-sitter $10 an hour for? Sometimes we determine it is and we both go out… Sometimes we determine it’s not and we save money… And sometimes we determine that only one of us goes out… like there was a local bar band that we both really liked and we would take turns seeing them… my wife would go with her autism mom friends one time… and I’d go another time with some old high school friends the next time…
Now let me jump into a couple of other areas of your note.
We know that we have only one kid, and he’s a severely autistic kid with ADD and ADHD. We have no other kids. And I know you mentioned in your note that you have multiple kids with 2 on the spectrum.
I said in another post (READ) that I don’t buy into that “God only gives you what you can handle crap” but maybe I buy into it a little because we readily admit that we couldn’t handle any more. We decided to not have more kids after Kyle because we were fearful for more asd kids (READ) and were afraid that we couldn’t handle it. So yes, many of you have multiple kids and some have multiple asd kids and you hear old Autism Daddy bitching and complaining and you’re thinking WTF?, what’s he complaining about? I’ve got it 5 times harder… To you folks I tip my cap and say, you win… you’re obviously stronger than me… having one kid like Kyle is about all I can handle…so I’m weak and you’re strong… I’ve only got 1 kid with asd and I’m on antidepressants…
When it comes to my wife getting a job… I honestly don’t see what job that she could get for the 5 hours a day that Kyle is in school that would bring in enough money after taxes to make it worth her while…and what kind of job that she could get that would be so flexible with the weekly drama that is life with Kyle….not a week goes by where she isn’t called about something… picking him up early because of an illness… going in early for a meeting…. dropping him off late after an early morning doctor appointment… It never ends…
And as to why I took off 2+ days this week because of the Kyle recent school issues? Can I afford to waste 2 vacation/ sick days? For something as important as meeting with a lawyer, or attending an emergency IEP meeting…you bet your sweet ass I can! That’s what partners are for!
And when it comes to washing the dishes and buying a new dishwasher….ugh I’m so exhausted about this one… I said early in that blog post that we were messy before Kyle and we are even messier with him in our lives…so dishes aren’t a priority… a clean house is not that important to either of us… and Kyle is not the kind of asd kid that needs everything in its place so he is fine with it. and shopping for a new dishwasher isn’t a priority either…. Guess what, we still haven’t bought a new one!
If I think of my excellent points I’ll add them in later… For now, that’s all… now I’m off to dirty up some more dishes…. 🙂
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THE END!
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Added 2/20/13
If you read some of the comments below from when I first posted this back in Nov ’11 you’ll see that the original anonymous commenter that started this ball in motion 🙂 commented and explained her side of the story… and as with most things online, it was all a big misunderstanding… She did not mean to be harsh… I was just reading it that way.
I said to someone before I originally wrote this that every time I re-read her original comments it bothered me less and less but I still wanted to write my “rebuttal” just in case others felt the same way…
Anyway, long story short, I don’t regret writing this post cuz now you all now ALOT more about me… but I am in no way angry at the original commenter…
Forgive and forget…
THE END #2
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If you’re gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20? This way I can make a little money to help pay for my son’s after school & weekend therapies. This blogging thing has been awesome & life changing for me… but I must admit that it’s taking up a lot more time than I ever thought… so if I can make a few bucks it’ll make it easier for me to justify….Love you all! Thanks!!
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View Comments
This is why I read your posts!! Everyone is differant and deals with things in their own way. I think you and your wife are doing a great job with Kyle. There is no right or wrong way. Adult time is very important in any relationship.
Dear God people and their holier then though opinions. I swear there is something in the air recently! I just got over dealing with someone like this over at The NT MoM. Why do I complain about cost of things if I don't work. Oh thats right, because like your wife, there is no job where I can work for 5 hours where I will make enough money to make it worth putting the little one in daycare and screwing myself when it comes to taxes (the one year I worked after having our son we got a smaller return and we lost money by me working).
You wrote it perfectly! Who knew once you had kids, especially ASD kids, you were no longer allowed to be human or have fun.
I applaud you. It's not about who has it worse and who has it better. It's about being able to come together and learn. Maybe the person who wrote that will learn a bit from you AD. ^_^
I guess the comments like that are meant to be helpful but unsolicited advice is worth what you paid for it.
Your points were well stated! I think you & your wife are doing an excellent job! You know, smetimes I think we complain about the cost, for more than one reason: Yes, it is the cost of the issue at hand, but also the fear inside knowing that there is a VERY REAL possibility that this will not help our child despite our overwhelming hope and longing that it will-and guess what, that HURTS!! My husband & I do not get the chance to go out much, not b/c we don't want to, but because finding a sitter who knows how to deal with our son is the issue. We have one for during the day, but not one for the evening/night hours. I say Kuddos to your and your wife fo taking every opportunity you can to get away and take the time for yourselves! Stay true to who you are...ALWAYS! :-)
Hi AD, that was little old me who caused all the controversy :/. I was looking at your page and had no idea that my words bugged you. I was just saying I thought you had financial issues (since I read about the copays, cookies, etc.). I made an assumption that you were struggling financially, my error. That's the problem with blogs, at least for me
I take info that I see and run with it. After what I read by others on fb I came across as angry, I wasn't angry in the least- from my point of view I saw what I thought was a problem (money) and I offered a solution.
I didn't want to come across as better or stronger since I have more kids I win, this is def not a game to me that I would have chose to play. I'm sure you'd agree.
I know exactly what you and your wife go through, I'm on anti-anxiety pills suddenly developed GAD and panic attacks after his severe autism dx and after his life threatening seizures.
I once had a lady tell me "at least you have other normal kids". I was enrageD!! Was that supposed to make me feel better? She had one little girl with fragile X, so to her, even my situation seemed better :)
I know she didn't mean any harm and probably didn't realize the enormity of her statement. But believe it or not, her one little sentence?? It lives with me all these years later.
I can assure you having other typical healthy children doesn't replace the one with severe autism, it struck me very hard, I used to be angry, I did fall into a depression at the time of diagnosis, but I'm not angry anymore. I have accepted what is and have heard that statement "God doesn't give you anymore than you can handle" more times than I can count and my favorite one?? "God gives special children to special parents". I guess I do buy into that a little too- but why is it some days I feel like banging my head against a wall too? :-/
AD I really wasnt insulting you or your wife. I made an assumption that was incorrect I thought you had financial issues. I'm glad you don't, because that would be another burden.
I also totally understand your point of your wife not working, I work part time. Mostly mornings but I can't tell you how many times I've had to call out or rearrange my schedule bc of my son. Getting calls he doesn't look "right" from the school nurse and that I should get him, or they "think" it's his ears again, and when questioned if they actually checked his ears and they tell me " he wouldn't let me" was the best one yet- they just didn't want to deal with him or maybe just didn't know how, maybe they had genuine concern, who really knows the motive??
I've lost time from work for both genuine reasons when he was sick and other reasons when he didn't keep his clothes on. I've paid that damn co-pay sometimes 5 times a week only to find put his ears are clear, he wasnt sick and I get fed up too.
Again I didn't mean to insult you or come across as angry, like you I take things one day at a time. When my son goes an entire day without incidence, I wonder what's wrong with him, anxiety starts to creep in, and I ask myself why he didn't bang his head today, why didn't he have a single crazy moment (throwing things off the shelves), etc and while he's sleeping peacefully i sit over him and watch him breathing, like you would do with a newborn baby- sometimes I break down and cry, sometimes I take a selfish moment and catch up on TV shows that have been on the DVR forever and watch a marathon of my favorite shows....but I get where you're coming from, I typed before I thought in my last post.
I still think highly of you and your wife, and your precious son.
As I read aloud your blog to my husband early this morning, we snicker to each other over the points you make that relate to us. Autism Daddy and Autism Mommy you guys are great parents and are doing an excellent job of raising Kyle. As a parent of a child who has severe autism, non-verbal, seizures & OCD and a child who is neuro-typical, I love that you are finding harmless ways of decompressing the life that is autism by writing a blog and going out on dates with your wife listening to bands with friends you both have and letting the freakin dishes go. :)
I applaud you too, AD..
i am one of your FB followers from a far away country (not Azerbaijan btw-but close ) where 90% of the population haven't even heard of Autism...And autism or anything which is not typical in a person is regarded as a stigma..On top of dealing with this most probably life long diagnosis of my only son,we have to make sure that no body knows so there won't be a queue of people right out side our house on the following day who have come to see the 'abnormal' child..I have been taking advice from parents all over the world regarding the issue and I had to tell them about this 'nobody knows' issue when they asked me to form support groups within our tiny island etc etc and they were (kindly) telling me that a child with autism is a gift from god and stuff plus that i should come out with his diagnosis in front of everyone etc etc...Wish i knew better English (FYI English is not my mother tongue) to explain to them that it is not because I am ashamed of my son that i do not go out in public and accept the diagnosis..i am too weak at heart to handle so many things at once...wasting all my strength on combating their queries,stares,sympathy is the last thing i want to do right now..I need to conserve my energy to deal with this 'thing' my son was diagnosed with...Around this part of the world life is difficult enough even without being given a diagnosis to live with which you have never ever heard of beforehand..
My point is that we all have our limitations,abilities when it comes to coping with things that bother us..some might just get stronger and stronger while some like ME would fall apart and need time to get back on our feet..But that doesn't make any of us vulnerable for criticism..
Around here there are no therapists..no autism specialists,etc etc...We sought help of a pediatric psychologist and at the same time we learn through internet about various modes of therapy and are implementing them at home as much as possible....We were never told where in the spectrum that our son stands but i think it's severe...Dealing with all this sometimes drains us out completely so we too chose to spend a bulk sum for getaways to recharge our selves...we even save money for recharging purposes...Around here there aren't even 'non fattening' antidepressants for the mom.. so expensive holidays are our only resort to keep our selves sane and functioning for the sake of doing anything fruitful for the sake of our son...Does that make us selfish.?? I don't think so..
After the initial and prolonged grieving period I have come to the conclusion that though we might be parents with a child with severe autism but our lives need not stop there...We should do as much as possible to make our son's life better but we being devoid of any fun or being house bound is not going to help him in anyway...it will make things worse for him and for us and no body will be happy..
AD as i see it you dont have to answer or explain your self to anyone..it would just use up the energy and the happiness we have saved up within us for the future...
Sorry for the language errors but i think i have made my point..i love reading all your posts ... they just assure me that i am not the only one..
Very well said! =D
To NT mom, I don't have a holier than thou attitude. There are jobs where she could work, if money were an issue. They don't have other children, if there were younger siblings that she would have to pay for daycare I never would have suggested it, obviously.
Knowing what I DO know from AD blog, he stated his wife has 5 hours of free time per day at the time Kyle was in school, so a job like myself HHA or there are other jobs, housecleaning, running errands/laundry for someone who can't get out, making a loudly extra (and I do mean a little) or in some families the parents work opposite shifts if they need to for financial reasons.
I think a lot of the other reactions to my original post were from angry bitter people. Just as I made an assumption that AD was struggling financially by commenting on having to pay copays, & the cost of cookies Kyle likes, etc.,When he said he'd do anything to get Kyle to gain weight, to me that 44 cents a cookie is nothing!!! But then in the next blog I see they spent a lot on concert tickets, maybe someone can see where I was coming from.
Now that its been explained that the complaining was coming not from lack of money but just sheer frustration, I get it.
Hi there - I read your blog occasionally, and hope you know that you are phenomenally great parents, dealing with a challenging situation. Sounds like you have developed the best possible strategy for handling your son's challenges. Most people (myself included)couldn't come anywhere near your level of commitment, love and self-deprecating humor. You're amazing - pat yourself on the back and go see some more bands! p.s. my daughter just started working in neuroscience, learning more about autism, and I will recommend your blog to her as a great parent's perspective. God Bless.