Sunday, November 20, 2011

I Need a Thicker Skin: All About Autism, $$, Wives, Jobs, Priorities & Dirty Dishes


get it?  armadillo...thick skin... :-)




(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!



When I was thinking about writing this blog post I had alot of other things I wanted to say...and they were all excellent points...:-) but I can't remember them right now... You know why?  Cuz it's 8:19am and the wife and I went out AGAIN last night to see a bar band with a bunch of old high school friends and we drank alot and were out til 4am!  So I'm writing this slightly hungover and on less then 3 hours sleep.  I'm letting the wife sleep in because she drank more than me...  She's got a rough week coming up with Kyle not in school due to the holding breath nonsense so she needed a good night out...

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....  :-)


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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64 comments:

  1. 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.

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  2. 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.

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  3. 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. ^_^

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  4. I guess the comments like that are meant to be helpful but unsolicited advice is worth what you paid for it.

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  5. 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! :-)

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  6. 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.

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  7. 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. :)

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  8. 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..

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  9. 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.

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  10. 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.

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  11. I think some folks are getting off track just a little!! :D

    The original poster made what she said was an assumption based upon what was written. Don't we all do that to some point? How are any of us to know what Autism Daddy's salary is, or what point he was trying to make without it being explained? A response above did the same thing the original poster did, made an assumption that Autism Daddy or others in a position similar should be devoid of fun, nowhere in the original post did it say that.

    The original op said she was offering a solution to what she thought was a financial problem. Maybe we all need to take a moment, realize what is being read, then comment! :D

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  12. Wow- Just gotta say... we hear ya! I gotta get DH to subscribe to your feeds. I know He would join in the cost points. Cost is the tangible exhaustion on this road. Good job in keeping it real.

    To each their own-- no room for judgement on this path. It's survive & conquer, baby.

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  13. Hey guys,

    Thanks for all the positive feedback!

    I don't know if you saw it above, but the original anonymous commenter that started this ball in motion :-) commented above at 10:04am 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 yesterday 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...

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  14. Last comment, I swear! you are all saying I have no right to judge, and yet my words are getting twisted horribly and now you are judging me! You are doing to me (making wrong assumptions) just like I did to AD. (ugh). I am not mad angry, or bitter. I had my typical older 3 children prior to my severly affected ASD son, I didn't get the mild ASD dx on my older son until he was 8 yrs old. If he were my first child I wouldn't have had a second one because of the care he requires. I am not jealous, I go out too! LOL but I don't come to fb bitching about copays then spend hundreds on concerts, that was my only point.
    I don't have to work, it's actually my choice to work some mornings each week outside of the home, my husband makes good money, I joke and say my time at work is my respite, it really is!!
    Again I THOUGHT AD had money issues, he doesn't, case closed!
    As far as the poster who said I "had no free time but have time to write here" NEVER did I say I didn't have free time! My husband is with the kids at the playground and this is what we do, he takes them Sunday mornings to give me free time and I take them Wed evenings to allow him free time. My husband works 60+ hours a week so I don't have to, he says he doesn't understand why I work but as I've explained above it's a respite for me.

    I like having a little extra pocket money also, again it's not much at all, just under $200 on a good week, enough for me to get extras.

    We are lucky we have help from the state I live where income isn't considered - and every Friday evening a nurse comes in for 4 hours which is when we go out, either by ourselves, or to give the other kids 1:1 time.

    I have a feeling that at this point no matter what I
    write, someone is def going to judge me as I've judged AD. Oh well...back to my free time :-)

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  15. So then those people who DO have monetary problems are not entitled to enjoy their lives ?? is that the point made here ?? someone please clarify..

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  16. My biggest problem with the blog is listening to you complain about small co-pays and trying to find waivers to get the state to pay for things when money clearly isn't an issue. My little one attends a special ed preschool where half of the families live below poverty, and they still can not qualify for any state respite care, services, etc if they make over $709 a month!

    Perhaps the fact that you seem to be out of touch with the reality that many states do not have any type of waivers, etc and these kids go without services everyday. While you complain about a co-pay, many of our families spend years waiting on lists to even hope to get services they really can't afford. Imagine a world where you can to afford the $2000 to rent the latest gadget for your home and maybe we can talk.

    I also get frustrated as you blast your family for not being willing to take Kyle more often although how often do you take their kids? It goes both ways...but you tend to fall back on the crutch that your child is too demanding for you to return that favor but they should jump at the chance to help you out? That makes no sense...

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  17. Ok that wasn't me ^^ the "original" poster lol just wanna clarify :-)

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  18. Hi AD.. first of all this is not an attack on the original post, totally got that it was a misunderstanding. Just making a general observation.

    I just wanted to say that I completely understand your situation. I hope that your wife is not feeling offended by all the comments people are making. I also have a severly autistic/non verbal daughter. She goes to school until 1pm every day. We get free services, we also supplement a lot. I dont work, I don't have to work. My husband makes enough money for me not to have to work. I enjoy my mornings and recharge. Go to the gym. Meet friends for lunch. Don't always do the dishes either. And guess what? I am constantly being judged by people... What am I doing on my free time? Maybe I should be making and laminating pecs? maybe at least volunteering at my daughter's classroom? Leave me alone! I just wanted to tell your wife that there are other Autism mommies out there that do the same. Because our husbands get it, and support that! Happy mommy, happy family you know.. and that is true under any circumnstance.

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  19. Two Posts up....stop complaining and do something about it. you think the states that have those waivers didn't have people FIGHTING for their children? Make noise, get your needs met. Also us New Yorkers get all these fancy services as we pay $12,000 a year in property tax ON TOP of income tax and sales tax so yea we can complain about the cost of things

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  20. Ok, it's me again, the "original" anOnymous. Now I'm aggravated with the other rude comment by the other anonymous poster. I may have missed the post where AD complained about family not helping more, but anonymous' reply asked if AD offered to sit for their children, really? How would this be possible when Kyle is the equivalent of 5 kids? I know bc I have my own "Kyle".

    I also wanted to say that I liked the response above me as far as volunteering for her daughters classroom, I've had family members ask me this and I laugh bc I need a break, are you kidding me?!? Lol but just wanted to add I'd love it if a family member, ANY family member helped us out now and again, they do let us know when they donate to autism speaks though! Lol - if you don't laugh you'll go insane! :p

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  21. Everyone's story is different. All of our journey's are difficult. I have a sister-n-law who has 8 kids, I have 2 with Aspergers. I don't think either one of us would want to trade places. We all have our level of stress. We are just doing the best we can. Blogging...writing is a great release. Don't ever edit yourself...just write what you live.

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  22. My Autistic son would say "Why can't we all just all just get along?" Just my 2 cents - I wouldn't tell or defend my income to anyone - Autism Daddy shouldn't either. His wife does have a job AND she works for free, although I'm sure the bennies are good. ;) Hang in there everybody - don't take your eyes off the ball to compare yourself to anyone - this is your world series folks - wishing miracle plays to you all. xxoo

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  23. OMG! No wonder your wife dislikes you posting all this. But I see that you're doing it to get money for his treatment. However, posting stuff like that picture of the sink full of dishes would be embarrassing. That's not the kid's fault. You shouldn't let them pile up like that! Shame on you! Do them as you dirty them and they won't pile up. Same with laundry! That's so unsanitary! Don't blame autism for that or your dirty car. You're doing too much extra curricular, drop it down a notch and do your dishes!

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  24. WTF! It's not Kyle's fault or autism fault your minivan is a disaster! Don't eat in the car. Clean that sucker up. You give in so easily and think giving him whatever he wants will keep him satisfied and your drive easier but at what cost? Anybody learning anything when you spoil him?

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  25. To the woman with the overweight autistic child, you obviously are the overweight problem. Stop giving in and control the food/snacks/treats intake. Ridiculous

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  26. Ok, that's it. I've disabled anonymous comments on this blog. So if you want to say something nasty...or positive... you'll have to sign in...

    The person who left the last 3 comments today from 3:39pm - 3:50pm is the straw that broke the camels back...

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  27. Anonymous @ 3:39, 3:44 and 3:50. Parents of severely autistic children, struggle to get out of bed in the morning. Keeping kids alive and from burning down the house or hurting themselves or others is the primary objective, not dishes. Have some grace please!!!! Everyone has different priorities, clean dishes are yours. Leave autism daddy alone unless you want to go clean his house, then I'm sure he'd be willing to have you over. I know as a parent of a severly autistic child and a second with PDD along with 2 NT's I could sure use help. Autism Daddy, thank you for your pictures. They make me realize I'm not the only one struggling daily and living in this battlefield. Thank you!

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  28. I think you have the same nut I had. AD, thanks for being you and like Erin said, thank you for letting us know we arent alone in our daily struggles

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  29. You and your wife rock. I have 1 son who is on the milder side of things and is considered high functioning. Most days it's a struggle for me to get the dishes done let alone everything else. Let those people who say you aren't doing something right walk in your shoes. They wouldn't last 5 minutes :)

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  30. I'll be happy to sign in. Thanks for sharing your life with the world!! As the mother of a 6 year old boy on the spectrum, there's not much I hate more than people who either criticize my use of time or people who tell me how busy they are. Unless you have more than one child with special needs and/or more than one job outside the home, I don't believe you. :~)

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  31. Logged in and not afraid!

    Autism Daddy how you have fooled so many people is beyond me! All your loyal FB followers say how remaining anonymous is cowardly cracks me up because YOU are doing the same thing Ferris!! lol!
    Oh where do I begin? How about where you complain endlessly about Jakes expenses and yet you NEVER complain about throwing down a couple hundred bucks on a concert! Or how about the housekeeper you have? A HOUSEKEEPER when you have a SAHW?? WOW! Haven't heard a word about what you spend on your own prescriptions but that poor little boy of yours, HIS expenses are just too much!
    So much in fact, that you created a paypal "DONATE TO HELP PAY FOR ABA THERAPY FOR KYLE" when what you and your wife waste should be going towards him!

    Ask for donations for your concert tickets or late night drinking binges, see how that works out for you ;-)

    You are something. Supposedly a very supportive husband and dad then where do you find time to come here and update so frequently?? Where is your son while you're on here "ranting" and your wife is reconnecting with ex-boyfriends? That poor little boy :-(

    I feel so bad for him, not because he has Autism but because you are using him as a pawn, as a way to make cash, exaggerating his issues (as if they're not bad enough) to apply for waivers. It all makes me sick, and seeing other posts I know I'm not the only one who could see right through you.

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  32. kellycody, should I assume that it was you who wrote the other 3 nasty comments this afternoon?

    anyway, for somebody who hates me you sure do read my FB page ALOT!!! Some of the things you are refereincing are from status updates from months ago!

    I mentioned that we get a housekeeper in once every 2-3 weeks one time! I didn't see you comment on it way back then....

    applying for waivers, my wife reconnecting with old boyfriends on FB, you know it all... but how come you've never commented before? How come I never saw a nasty comment from a kellycody on Facebook before? You obviously read everything I post?

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  33. As a PP said, in the words of their son - "Can't we just get along?"

    The fact is, it doesn't matter what state your finances are in, whether your wife works, husband works... whatever. This is one man's perspective and one man's priorities. If you disagree, or are outraged, as some of you seem to be, then don't read. Move along and be happy and content with how you handle life.

    Harsh comments and judgemental attitudes are not going to make you, or AD, any better off. The way that you do things, I hope, is right for YOU. That doesn't mean that it's right for everyone. I personally work from home, only a little, and couldn't handle much more with how my son is and the appointments I attend etc etc. It works for me and DH... I know it wont work for others. I do prioritise me and my DH spending quality time together on occasion. I also prioritise me, DH and DS spending quality time where we can forget about AUTISM for a few hours over the other stuff. That's my way and while there will be some who disagree, I know in my heart though, that I do the best for MY family and I trust the general population do the best for THEIR'S.

    Stop being so judgemental and condescending!

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  34. I wrote a new blog post on a different topic but at the end I came up with another reason for the wife and I to try to go out NOW on date nights as often as possible... You can read it at http://autism-daddy.blogspot.com/2011/11/how-and-why-we-take-our-severe-asd-kid.html?m=1

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  35. I hesitate to post anything on 11/30 since it seems that things have died down here, but after reading all of the comments, I feel not only compelled to reply, but required to do so.

    Let's start out with the first thing anonymous posters can complain about with me - I'm not an Autism mom. Yup, I said it. Clearly I'm someone who doesn't even have a right to this debate, but I'm throwing my two cents in anyway. I do, however, have a special needs daughter and I understand co-pays, dirty dishes, nights out and upper - or mid - middle class Americans still looking for financial help. Okay... let's get to it.

    First off - Way to go AD for posting! I think it's great that you put it all out there and explained your situation and view. You didn't have to and you could have chosen not to respond to Original Anonymous (OA), but you did. I like it.

    Second - Way to go OA! It is H.A.R.D. to admit you're wrong! Not only did you say that but you explained why you were wrong and apologized! Hard to do when everyone was clearly calling you names that weren't actually said out loud, but we all know they were saying. (BTW, in full disclosure, I was one of those people and I was calling you those silent names, too, until I saw your response. I totally changed my tune when you responded, though. I should get points for that.)

    Third & Final Point: Autism-Daddy is a blog. It's a place to rant and complain and cheer and share and lament and sympathize and empathize. It's a personal opinion. It's private so the entire world doesn't know exactly AD & AM & Kyle are. That's okay. It's a place for AD to share HIS thoughts and maybe say something that might help someone else. And you know what's great about the A-D blog? It might help someone else figure out something they want to do or try (rent a hyperbaric chamber for their kiddo or add in an occasional date night to a dive bar) and it might help someone else figure out something they don't want to do (give up the thoughts of the GFCF diet or make sure that NO. MATTER. WHAT. someone in their family gets the dishes done before the pile up in the sink.). Either way, it could potentially help - that's a bonus of reading a blog written by a man like AD but not the point of his blog.

    If you want to read every post and agree with AD, that's okay! If you completely disagree with AD on most or even all of what he has to say, that's okay! If you want to comment about how you agree or disagree, that's okay, too! Those are all choices. We each make our own choices, but we can make choices for others or force other people to agree with our choices. If you're going to comment, be strong enough in your convictions to say who you are. If you're not willing to add your name to a comment, perhaps you don't feel strongly enough about it to defend yourself if disagreed with, in which case you need to decide just how strongly you feel about it. [And again, yes, A-D is an anonymous blog, but he's not making judgments about other people, he's discussing his own life. It's a totally different situation.]

    The only other thing I'd like to say is my name is Sam Zavitz and I have no problem with anything anyone would like to say about my comments. Those are your opinions and you are 110% entitled to them, just like I am entitled to all of the mine that I just stated.

    Rock on, Autism-Daddy, rock on.

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  36. Man - a seriously long 'power to the people' comment and I made a typographical error. Totally not cool.

    In the second to last paragraph, it's supposed to read, "We each make our own choices, but we CAN'T make them for other people."

    Typo fail.

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  37. AD and "original anonymous" way to go to clarify with each other. I am happy to read that. and, AD, I am loving everything so far as you've nailed our situation on the head dang near every post. we do live paycheck to paycheck, but we also do make time and money to do things for/by ourselves. as far as insurance, our daughter has CHP here in ny and God willing she will have Medicaid soon. I do feel guilty sometimes not having a job, but your explanation warrants praise. there is no job locally where I could benefit working pt and dealing with our daughter's issues at the school. my husband works 2 jobs to make our ends meet and wants me to stay home. and of course, you have every right to complain when writing checks out. just because you have a buffer and a decent income doesn't imply that you are loaded with money. to me, it implies that you have been smarter than myself when it comes to money :) sure, we could be sitting a little prettier in my opinion, but obviously my frivolity was my downfall. not your fault so I won't tear you down for it. all in all, this was a fabulous read, and I am glad I stumbled on your blog today!

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  38. Single AM here. I have to work and am constantly worried that I may loose my job due to all of the unexpected crap that can come up with autism and epilepsy. Then there are days when I am not mentally "there" because I am consumed with everything I need to plan and do with my asd-child. It is TOUGH and adds a whole new level of stress to an already stressful life. The ideal situation is to have a stay at home parent who can manage and deal with all of the autism related stuff, which we know is a full time job in itself. Then the other parent can focus on making the money, providin benefits, etc.

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  39. Right on autism Daddy!

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  40. I personally admire every single thing you and your wife do for your son. It's perfectly okay in my book to bitch about it all day and all night and you continue to do everything for him. I completely understand that you want to go out with your wife. Hubby and I go out 2x a month for two hours each. I know parents that NEVER go out. What I don't understand is how in the most expensive place in the U.S. you are paying your sitter $10 an hour. We pay $15 in the 'burbs of Cleveland. Keep up the work, A.D.!

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  41. I am surprised you felt the need to defend you and your wife's spending habits because honestly it is none of anyones business. I have one NT child whose 2 and i don't always get my dishes done every day and some times I complain about the money i spend on his doctors appointments and other things, I am a single mom with very little income and no help from his dad but either way its still money you work for and like you said you've never denied Kyle of any thing he needed or that could possible help him. I tip my hat to you AD.

    PS On days where I feel like my son is going to make me pull my hair out I think of the struggles you go thru with such severe autism and it helps me to find my balance. :)

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  42. Wow, Autism Daddy, that was great and EXACTLY what I would have said. Personally, I think, any parent who chooses to work when they don't absolutely have to in order to get the bare necessities, I mean, give up the cell phones, the cable, the internet, etc. whatever it takes, to be home with their child or children needs to get their priorities straight...I salute you and your wife for realizing how much more you are giving your child by giving him his Mommy when Daddy's at work. :>)

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  43. Ummmmm, wow.
    I must admit I have not read every 'rant' on this blog but I do read particular ones that are of interest to me. I read my way through all of these postings and I find myself wondering when anyone felt they had the right to judge/condem/criticise/comment on/ attack/give advice to anyone?
    Yes, AD invites comments on his blogs but I don't think that is an open invitation to tell him what he is and isn't entitled to or how he should or shouldn't live his life.His perspective is his perspective and he is entitled to it.

    Why are people attacking other people on here? Pain is pain, what hurts me may not hurt you, what you can tolerate I may not, what you agree is right may differ greatly from my version of right and wrong. When did it become a pissing contest, the ASD parent with the biggest load to carry was the winner?

    It's your life, you live it and no one else does. How every individual in this world thinks, feels and copes varies dramatically and shifts and changes with life's eternal tides. No one has the right to tell anyone else anything.

    A major part of being a human being is honouring yourself and what makes you who you are. We all need different things in life to fullfill us and make our lives enjoyable and more then a mere existance. Selfishness is a part of being. If it were at the neglect or harm of your another person then that is one thing, but if there are no injured parties as a result of this selfishness why is it an issue.

    Just the opinions of an Aussie ASD Mumma.

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  44. Just a quick comment, I read all the post here and have worked my way through almost every one of them (still a few to go) I'd just like to say one thing.

    There is no such thing as "The Pain Olympics" No one is worse off than anyone else regardless of where they fall on any spectrum so having just been launched into this Dx with my son and the challenges he brings with him are just as valid and head banging on the desk hard as anyone else's issues.

    If AD and AM can find some simple pleasures ore power to them who gives a figs arse if it costs money, everything does today so get over it.

    Grrrrr life is bloody tough enough without this crud.

    Jennifer who doesn't have a website yet.

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  45. Well said. I have a severly autistic boy neaarly 7, I am lucky and have a supportive husband. I would love to go out to work, but what could I get that is that flexible, and I also have major back issues to contend with.
    As for you going out with your wife to a concert or other things. I think it vitally important to still spend time as a couple, particularly in our situation. It is too stressful in a marriage when you have a child with a disablility (particularly autism), and it would be very easy to end up being a statistic of divorce. Keeping the marriage, and friendship you have going is vitaly important. Dont let others get you down. You are doing a great job. xx

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  46. Hi. I have been following your blog for a few months now. I have a nephew who has autism , and I wanted to understand more about both the condition and how it affects the lives of the parents / carers and other family members. He is my brother's son and I live in a different city , so I am not as hands-on in my nephews care as I would like to be , but do try.
    I love your blog, as it's a daily reminder to me about what my bro and sis-in-law have to deal with on a daily basis. We are in Ireland and there are cuts to everything- SNA's , school places , therapies, you name it, the Govt. have crucified it. I see my bro / s-i-l struggle to provide my nephew with the help he needs. Anyway, I digress - you answer the questions that I would love to ask but am afraid to i.e. what will happen after we are gone. You say how it is - i.e . people keep telling us about the next Big Thing - I have stopped offering new diets, therapies etc. and now just give my support. I also spoke to my bro about you , as I felt that he needed a male outlet as his wife has the Autism Mummies etc, but he has nothing like that. I know that your blog is not just for males:)
    I guess I just wanted to say thanks and keep up the good work . xxx Slainte agus go n-eire an bothar leat (cheers and may the road rise to meet you)

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  47. Due to my Autistic son's many trips to the Dr's and Therapies, and other treatments and expenses... My wife and I have a nickname for him between ourselves.. we call him "Co-pay"

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  48. I think you have your priority in order. You work hard your wife is able to be there for your son. The topic of my working is something my husband and I have butted heads about. Yes I would love to work . The money would help. Who is going to hire and keep me on when I am at beckon call to my son, his school his babysitter. Then I pay for a babysitter, My child is only 5 and in school for 2 hours a day. I have to drop off and pick up if I want him in a great district and a babysitter is cheaper in a bad district. I did this My boss did not understand, nor did he understand my taking time to care for my child when necessary due to the fact if my husband does it I don't pull enough money to pay my rent. Some situations need a parent home. I think you do a good job. you are handling it so it must be what you can handle. Atleast I keep claiming that.

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  49. I know other posters have said this, but none of us has the right to judge how any other family deals with this situation. In my family, my now-ex husband went out all the time, until late morning, to escape the stress of our severely disabled son. We lived far from family and couldn't find a sitter we trusted. I tried to do date nights at home, but he insisted on going out with single friends. You can see where that led. So keep doing what you and your wife have to in order to nourish your marriage. Neither of you wants to end up where I am. There is no way to explain divorce to this wonderful young man and now I handle him alone 99% of the time. Go to your concerts, stay connected. Kyle will benefit from it and you and your wife will be able to support each other. And please don't stop posting--your blog is so helpful.

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  50. You just live your life the way you see fit and everyone else can keep their comments, suspicions and nonya-business questions to themselves.

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  51. I quit my job when my son was being diagnosed. We lived pay check to pay check. I decided to take in a few home day care kids to supplement the costs of living. Would I do it again? Yes..You do what you need to do to survive! Go to your concerts, bitch about money, do what you need. I do the same things! Its how we cope and for a tiny moment in the heat of the moment at that concert you forget about all the issues with your child and focus on you! and that is ok!

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  52. You are doing a great job! You are a better parent to your son because you know how important it is to keep yourself sane! Have a drink for me :)

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  53. Go for it! If I could I would too - sometimes you have to be a little selfish. It would be different if you didn't have the money but you do and it's your business how you spend it anyway.

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  54. Seriously...its no one's right to judge what you do with the money you WORK for. YOU AND YOUR WIFE ARE AWESOME PARENTS THAT DESERVE A NIGHT OUT. I so wish that I had the ability to go out sometime. The ex could not handle the situation and left. . And yes ...my dishes are sitting in the sink right now. and NO my house is not filthy...but it's not spotless either. ....and YES I am on the computer. I can see what my child is doing from here...so that is ALL THAT MATTERS.They will get done when they get done. People need to mind their own skeletons.

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  55. Lots of reaction here. She called you out...for being human. Every special needs parent laments what it might have been like if their child was 'neuro-typical'. You need to vent once in a while. She took to your blog to vent and did what is only human, compared her situation to yours. No point in splitting hairs over details. All pain is relative. It's clear that this blog is an outlet for your everyday stresses. Treat it the way you would a friend, only pay attention and spend time on the ones who are willing to be supportive. All others are just wasting your time. You choose what needs correction or reflection in YOUR life, for YOUR family, not anonymous readers/posters. No one is handing out ribbons for who has the best or worst situation. Lets just hold each other up, we're all in the same boat.

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  56. Why is the autism community so quick to judge each other. We ask that others don't judge us, or our children, and yet we are guilty of doing the same to other parents of autistic children." My autistic child is more functioning than yours so he's not a true representative of autism" (yes I have heard this before).

    Take autism out of the picture in this particular scenario, people who cry about expenses and yet have money are kinda dickish for lack of a better word. When you bitch about money, you are giving off the impression that you are in need, or that paying for these therapies is a financial hardship. That contrasts to other posts where you discuss expenditures, so you are setting yourself up for people to point that out.

    So AD.. take your wife out.. have a great time with your buddies.. and I sincerely mean that! Its whats going to keep you sane, keep your marriage in tact. I applaud that.. but bitching about kyles expenses.. yeah.. kinda setting yourself up.

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  57. I love your posts, they are so real. I am an older widow raising 2 special needs kids. I need all the humor I can get. We are very isolated, the internet is my main mental health support. Keep on keeping on....

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  58. Dear AD,
    You are a better man* (I'm a woman but you get my drift) than me because my response to said comment would have been "eff you, I hope you get the worlds worst wedgie from your judger macjudgey pants." Seriously. "Putting" your life out there on a blog doesn't excuse basic bad manners from readers, and I was taught that if don't like the state of someone else's business (or dishes) roll up your sleeves and lend a helping hand or get the eff out of their house and business. Good blog, thanks for sharing your reality with us. =)

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  59. I've been following you for sometime now. I do not have a child with ASD , but my daughters best friend is an 8,year old non verbal ASD little boy. The connection they have is nothing I've ever seen before. They do everything together and can't be away from eacother for more then a weekend. I don't normally comment on your blog but this one seems to have hit a.soft spot for me. I don't feel you need to justify why you do what you do. Keep doing what you and your wife do. My hats off to you both.

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