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| This is Paul Rudd, not me… 🙂 One of my fav movies by the way… |
(originally written & published on January 21, 2013)Â
A few days ago I wrote a post called “Not Much Teaching Going On At Home And We Are All Happier” (read) where I talked about how little instruction the wife and I do at home with our severe asd son.  And how I don’t think there’s a little Carly Fleischmann locked inside my son.  In the post I mentioned that we do stress life skills when we can, but the concepts of the alphabet (“point to the letter G”), colors, numbers, etc, we’ve given up trying to teach him that at home… and we are all much happier because of it.
I got all the usual comments.  Some people thanking me as always “for telling it like it is”… some people telling me not “to give up” so easily…some people telling me to try Son Rise or Playtime or ABA… some people telling me to change his diet.
And I am fine with all of that.  I don’t always agree with all your comments and I’m not always posting asking for your advice 🙂 lol…but I accept them all.
Most of your comments I love and they inspire me and make me want to keep doing what I’m doing.  Sometimes your comments make me think (“things that make you go hmmm”).  Sometimes your comments bother me or annoy me or make me feel even sadder or more depressed… but I’m a big boy and I can take it.  I chalk it all up to I’m putting myself out there to the autism community and your feedback, good or bad is what comes with the territory.
But I got one comment that really stuck with me.  It didn’t bother me or annoy me, but it stuck with me and I feel like I still need to talk about it.
Here’s part of the note…
hi – was thinking more about your post. totally get it, because I’m there. its so hard to just find the time. But I also have another part of me that says “suck it up, buttercup” because my 8yo non-verbal is just starting to verbalize now after excruciating effort and NO social life. if I’d have given up, or taken the “oh well he needs a break” approach (and believe me I would have LOVED to take a break) he wouldn’t have got there.
I wouldn’t tell 14000+ people you don’t think your son is any Carly Fleischman, because what if he is? she didn’t even start typing until 16. whether you’re ready for it or not, meant to or not, want to or not – you influence a LOT of people now. …
 I do think you have an incredible opportunity to help, too. don’t waste that. you are a good man, I can tell. you have a good wife. you have a good life. there are people fighting wars in bad places who have to leave their autie at home with only one parent or no parent. there are people who cant afford help, don’t have an education / have other problems. don’t worry about what you achieve, but instead of letting him zone on the tube… hold him. …
you’re a Dad. lead the way. every minute is an opportunity, and I know the way this world is set up doesn’t make it easy for us autie parents to do everything so you need to prioritize. nothing less than the future depends on it.Â
Now there’s nothing in there that I haven’t heard before… except the fact that I shouldn’t write something that’s on my mind because I have 14,000 followers and I influence a lot of people.  That’s new to me.  But I’ve got to state this loud and clear.
I AM NOT A ROLE MODEL.  I AM NOT A HERO.  I AM NOT AN “AUTISM WARRIOR”.
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I didn’t start my FB page and blog to be some autism parent role model or some autism parent superhero.  I started this all because I needed a place to vent… a place to write down my thoughts, frustrations, our challenges…and once in a while our little victories.  A long time ago I wrote this on the “About Me” section of the page and blog…
This page will be 75% comically ranting & complaining & telling it like it is and 25% inspirational & warm & cuddly & feel good stories…Ok, maybe more like 80 / 20… 🙂 All people are welcome on this page regardless of their backgrounds or beliefs. And you are welcome here if your kid is low functioning, high functioning, aspergers, etc. But always remember the place where I am coming from. Severe, low functioning, non-verbal autism. Just remember this. I have a 9 year old son whose receptive & expressive language are at an 18 month old level and they have been for years. So that’s the autism that I am writing about.
The mission of my page has become to talk about and try to laugh about all the unpleasantries of this crazy world of autism. I couldn’t really find a FB Page or blog that wasn’t all sunshine and rainbows. I couldn’t find a place where people actually bitched and complained about autism.
So, this is a place to tell it like it is, not to sugar coat things… We talk about poop on here ALOT, and complain about our kids crazy stims and bizarre sleep schedules. If you don’t like people laughing about poop and shouting hallelujah when their kids FINALLY fall asleep, then this might not be the page for you.
Also, please remember that this is my page and on it I’m sharing my story of my life with my wife and my only child, a boy named Kyle with severe autism. Sometimes you may not agree with everything I write about, and that’s ok, but just remember that I’m posting as a 42 year old dad, not some sort of autism expert.
And I stick by that.  You may not agree with everything I post and you can tell me I’m wrong about whatever.  I can take it.
But please know that I will not let the fact that I have 14,000 followers affect what I write about.  I enjoy writing what’s on my mind…or showing you what’s going on in my home… and my FAVORITE comments are when I get the feedback that says things like “it’s so good to hear somebody saying what I feel.”  That fuels me…
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And as for the fact that there’s other autism parents out there that have it harder than me and that I should just “suck it up” again I’ll say this…
Again this is what’s going on in my brain… and I can’t help the way my brain works…
But I will say that the same way that you can say when you’ve met one kid with autism then you’ve met one kid with autism… you can say the same thing about autism parents…
I wrote this a while back in another blog post (read), but it fits in here nicely…
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.  I’ve written before (read) that we decided to not have more kids after Kyle because we were fearful for more asd kids 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…
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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
Thanks for staying true to who you are. We need more of that and less judgement in the autism world.
Wow totally get the whole reason why you and your wife decided not to have any more children I have 3 children aged 5yrs 2yrs and 1yr we were told by the educational psychologist she thought our eldest had an asd when I was 7 months pregnant. With our youngest I have 3 boys I am now constantly worried about my younger 2 and always watching for signs. If we had found out sooner about my eldest I really don't know if I would have had more children. I enjoy reading your blogs AD as I can really relate toalot of what you say it's honest with no sugar coating keep it up much love and respect to you for telling it how it is x x
My philosophy on blogs is "your blog, your stuff" No one is forcing anyone to read it or follow it. When I write my Laughter, Could be the Missing Piece blog, I am not thinking about who is going to read it and tailor it to their particular needs. I write what catches my fancy. Stuff happens, stuff gets written, stuff gets said and may be taken the wrong way and I can't do a lick about it. So blog on and allow your 14000+ followers take what they will from your thoughts.
You're a lot like me, I love my son, but I'm pretty certain Autism isn't a gift from God and heck yea I would change it if I could. I don't want to change my son for the sake of it, I would be stoked if he didn't have to struggle with things we take for granted. As you say, play the hand you've been dealt, all we can do, its not easy...but I hope any other Dad who hoped to take his son to baseball games or shoot hoops in the backyard doesn't leave, don't leave....thats all I can say...your kid didn't ask to me born, man up and live what you made, as hard as it is
Anyone who uses the phrase "suck it up, buttercup" already thinks they are better than you. Pay no mind. I adore you because you are a good person who doesn't think he's better than anyone else.
This is why I LOVE your blog. You speak honestly. You clearly adore your son. I happen to agree with your philosophy too. You are a role model of sorts...accepting your life as it is and living the best that you can. Keep it up!
i here you yor not a role modlke i get tired of feeling like the poster child for autism sometimes .when people think we are all the same or they just are not getting it.one thing i would say is dont give up on your child yet .if my parents liosten to the so called experts when i was younger i would not be were i am today .they had to deal with some thinking i was mr when im not other telling them i end up in a group home an work shop an so on baslicy if one therhy wasnt working they try someyhing else an my mom work with me at home on top of what i was getting from school an therhy .you cant justy let the teacher do stuff anb not follow throw at home i like carly was somewhgat written off people thought i was so in my on world they talk about me like i wasnt there .it was very upsetting an mad nme so angry at times that i would act out an get spoken to about my behavior .never assume ypour child dosnt understand .not being able to speak isnt the same as not having something top say .it was all in my head just coulkdnt get it out for long time .whsat language i had didnt allways make sence was echgloic or say stuff didnt makke sence lor repeat what i heard deff wasnt convertional .i had alot of privet therhy to .guss it all click on year an i became a hf person but like carly it been a long hard road .never give up on child
Amen! That's why my blog says...not the Aspergers Mom with All the Answers...just looking for them.
I agree with being fearful and not choosing to have more children. My two year old daughter was diagnosed last year with both autism and type 1 diabetes and i am definitely afraid to have another. Your blog is something i just enjoy reading and have gotten some ideas like the iPad post the other day (thank you), but I would never let it influence what i feel is best for my child. Hopefully most other parents that read this or any autism blog do the same. Only we know what is best for our own children and families.
I always read your posts for the sheer honesty in them. My son just turned eighteen. He was diagnosed at four. He showed a lot of promise initially, learnt to speak, take care of his bodily functions, went to school, etc etc. In fact he did so well, with me pushing him for about eight hours a day with structured activities, that we almost thought we would give Autism the slip. Then, Bang! His seizures started. With each seizure he lost skills which we took several months/years to teach. Initially I prayed he would go to college. Now I just pray, he doesn't get the next seizure. This despite being on four medications which make him a lanky lad with tremors and pathetic small muscle power. Oh! I am a medical doctor, and I am tired of being encouraging to other autistic parents, and I am tired of trying to be strong for too long. Yeah, it comforts me no end to just read about your experience with your little guy. Say it as it is. No sugar coating needed.