Sunday, June 5, 2011

THE AUTISM DADDY RELIGIOUS MANIFESTO...













(originally written & published on June 5, 2011)



I hope people don't take this the wrong way and before I say it I just want to say that all people are welcome on this page regardless of their backgrounds or beliefs. I want this autism page to be (for the most part) free from all the debates i see on alot of other autism pages about whether certain vaccines cause autism, whether Autism Speaks is good or evil, whether this treatment is better than that treatment (trust me we've tried them all), whether using meds on our kids is good or bad, etc, etc.

The reason for this post?  At least once a day on my AD page/blog somebody will write something to the effect of "God only gives special kids to special parents" or "God doesn't give you more than you can handle" or my favorite..."your son's autism is a gift from God"

I don't believe any of these statements.

One thing I think you should know about Autism Daddy is that I do not believe my son having autism is a gift from God, and that God only gives us what we can handle. Now again i don't want to lose people by saying this. Again you are ALL welcome here. If your religion makes the daily struggle of autism easier to take, God bless (no pun intended). I wish I had something to make the struggle a bit easier to take, so I envy you folks there.

But I was raised Catholic. Lost my taste for it years back. I guess I believe that there's an all powerful being out there. But I find it hard to fathom why any God would intentionally give children a disability. I'm in this autism world over 6 years now and not a day goes by when I don't see a father with a typical son and I think what if and I HURT. I thought it would get easier as the years pass, and yet it didn't.

So I didn't sign up for this and I refuse to believe that someone or something CHOSE me and my wife to raise a son with autism and it's a gift. I mean I love my son. After 3 miscarriages HE was a gift. But the autism? That's some CRAPPY gift. That's a gift I'd like to return.

I also hate when people say "I don't know how you guys do it. I wouldn't be able to do it." I mean c'mon the wife and I are no saints, we're just doing what anybody else would do. We are raising our kid the best we can. Nothing more, nothing less.

We are not even close to perfect. We yell at Kyle when we know he can't always help what he's doing wrong. We curse. Getting ready and getting out of the house on a typical school day can be EXCRUCIATING.










Also you should know that we are not what the wife calls "uber autism moms & dads". We have done alot of the biomedical stuff and kinda got burned by a few (made Kyle worse?) but we don't keep food diaries and track/log his moods. We don't always engage him as much as we should. There's a point of every day where the wife and/or I are exhausted and we just leave Kyle alone in his playroom to destroy it while we spend 30-60 minutes vegging out watching tv or playing with the iPad.

We know it's wrong. We know that's time we could be reading him a book or engaging him in an activity. And we know keeping a food diary or a history of all the supplements & meds we've tried would be a smart thing to do... but we haven't yet.

So there you go, proof that we are not even close to perfect. Maybe we are TOO selfish. (I wrote another blog post about how selfish we are that you can read HERE :-).

But getting back to the religion thing...
I don't think Kyle having autism is a gift from God but I envy you if your religion makes autism easier to take. The wife and I used to kid about getting into Scientology because they all seem so happy. (See Tom Cruise on Oprah's couch). And maybe Scientology would make the day to day autism stuff easier to swallow.

I think we are both open to having religion back in our lives, any religion, something spiritual, but we haven't found the right one yet.

So again, I hope I don't lose anybody. And also please remember that I am looking at severe autism, the non verbal, head banging, playing with saliva variety. If your religious beliefs make the day to day autism easier to take, good for you. You know what makes my day to day autism easier to take? TV, running, my wife, my dog and a little white pill I started taking a year and a half ago (I wrote about my magic pill in another post that you can read HERE :-).

So for now, those are my religions.

THE END :-)

----------------------------------





-- 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!!



152 comments:

  1. I LOVE IT! (and by definition I am considered religious) It makes me FURIOUS when people make comments like "God doesn't give more than you can handle!" First of all I don't believe God "gives" anything like Autism or any other "bad" thing, second I have a close relationship with God and I KNOW he KNOWS I can't handle this that's why I give it up to him! We are so similar in our approach to this autism mess. I try to do as much as I humanly can and I often feel guilty because I don't do enough...But I believe in a more balanced life. OMG my life can't always revolve around Johnny! I have two other kids and they need me too. And if from time to time I don't ignore EVERYONE and veg out no one would be safe! As for the "wonder parent" comments they just help ease my guilt for sitting on the couch all day on Saturday reading blogs. (at least it looks like I'm a good parent!)

    ReplyDelete
  2. Wow... I am so glad I found your page. I have always been close to god and talked to him everyday, til I had Savannah my 11 year old daughter with severe Autism... I begin to blame god and question why he would do something to us and ur daughter since i was always so close to him...we had a breaking point 2 years ago in my marriage and started to pray again and do feel like god had lead me in the right direction now.... Working night shift for 9 years while my husband works days and working the days he is off and never seeing each other plays a big toll on a marriage... I pray to god and talk to him and dint feel I have to go to a church to hear man's word on God when I can read it for myself... Beside Savannah in a church...wow she pulled a 80 year old ladies wig off one Sunday and we never went back.. but you have to do what is best for you and your family... You can't be super dad all the time... I think we all try to grasps at anything to help our children, but being a psych nurse and taking care of severely mentally disabled people I can say nothing works forever. What helped Jenni Mc. Son isn't going to help others. I have read her books and they are great but it didn't help my daughter. After 10 years of trying everthing to cure her, I have finally realized... Love is the best thing for her, keeping my marriage happy, keeping my kids happy and having peace in knowing I have done everything I can for her, and to keep her safe..

    ReplyDelete
  3. I feel so very similar. I wish my more-religious-than-I-am wife could get it. I see my friends with their "normal" kids and just want to bawl sometimes. When I have some privacy I hate to admit it but I do cause no one can seem to just leave me alone to get it out of my system. I already find myself doing some of what you do, but then again I'm "lucky" in that my son has a much milder form of autism than yours, but he's not 3 yet even so who knows what the future holds.

    ReplyDelete
  4. Autism Daddy,

    I agree with you on so many levels. Two of my children have autism, one with severe autism. It's a daily struggle. Those that say, "God won't give you more than you can handle." aren't speaking biblical truth. It's not in there. It's not in the bible. They are misquoting, "I can do all things through Christ Jesus." I totally believe that God did not create or choose my kids to have autism. It goes against everything that I belive God to be based on the Christian scriptures. Because of the Fall and the introduction of sin into the world everything got crazy and messed up and now nothing is perfect. But when we rely on God we can get through the day. We can say I can get through tomorrow although no one understands the pain, the heartache, the constant mess, the unability to keep any furniture nice, neat or at all without getting broken. Cleaning feeces and urine off the floor daily is an emotional challenge. Fighting to keep clothes on is a daily challenge. These things are not of God. It's not His nature. His nature is to stand by us and help us grow into perfection which will only occur when we are reunited with Him in heaven. These are my beliefs based on non-denominational bible based thinking. Many may disagree with me. I can't wait to meet my "real" son in heaven. The one that is locked deep inside. The one dying to get out that the natural world by work of the devil has locked away. The only thing I can do is ask God to help me get through each day, enjoy the glimpses of who my son is through little fun, good moments during the day, and hopefully one day in heaven I will be able to meet him. Sorry for the long post. Autism pains me each day. It's hard to get out of bed, but my only hope comes from a God who I believe loves me and my son. I pray you find what you are searching for spiritually. I can only hope you grow to love the God I believe is real. Praying for you!

    ReplyDelete
    Replies
    1. Very well said. God Bless you and everyone that has a special child. I see it as an honor to raise a child with special needs.

      Delete
    2. Actually, the verse that is being misapplied is I Corinthians 10:13: "No temptation has seized you except what is common to man. And God is faithful, he will not let you be tempted beyond what you can bear."
      The problem is that that chapter is talking about temptation to sin, not dealing with life's circumstances.

      And while I am a Christian and can see God's hand in my life, the other phrase that gets on my nerves? "God is in control". It has been used on me as a thought-stopping cliche, and that is why I resent it.

      Delete
    3. iam a dad and yes its hell some days. and no one realy understands what our life is like o yes they say this and that and some days i feel like saying to them f--k off i do not want to here your shit our son is a cool kid he is 13 now and this autism is hell on him and us hey thanks for yous being here for us we look all the time we may not say anythink but we are always here

      Delete
  5. I love you - you are a Real Man - living in a Real Family. Your son is lucky to have you and your wife - no he wasn't a gift from a Deity - but he is your "gift" (both good and challenging) - and you do so well by him.

    ReplyDelete
  6. Thank you,thank you,thank you!!! for being honest,sometime I think I'm a bad parent when I hear or read a parent saying or commenting they would never change a thing abt their child while I wish every day I could change this life for him and our family.

    ReplyDelete
  7. Thank you for having the courage to write how many autism families function. We are not all perfect! As a mom of two kids on the spectrum we live day by day here (some days better then others). I am always feeling guilty that I feel sorry for myself or I give in to the the kids too much or I am too harsh and yell to much, or I don't give enough time to "the cause". BUT I Love my kids and try, and that is the best I can do.

    ReplyDelete
  8. I truely believe if u lose people over this they are not human. Every one has their own beliefs and so on. I to have a son with server autism. The only difference is my son says some words. He bites his hands till they bleed. Here in Aust we get door knocks from religious ppl. They ponce said he was a gift from their god. I turned around and said. If he is a gift from god. Why the he'll was he born with autism. I know autism isn't a gift. It is hard work that puts strain on your relationship. I love your page both ur blog and your Facebook page your doing what all all of us do

    ReplyDelete
  9. "Be who you are and say what you feel because those who mind don't matter and those who matter don't mind." - Dr Seuss

    Keep up the great work!!!!!

    ReplyDelete
  10. Well, taking religion out of it, you are a gift to us. Through your struggle you have helped a lot of us get through it. I know maybe in the grant scheme of things you might not want to be in that position, and neither do I, lol. I rather have just had a typical, superficial life where I could care less about sensory diets and doctors appointments and been consumed with little league or something. Damn it now i'm pissed because my son isn't in little league. Just know even with this BS, pain in the @ss Autism, you have touched a lot of peoples lives.

    ReplyDelete
  11. Thank-you for this post. I am a Christian who clings to my faith and the hope and comfort I am able to receive through my God and Savior and my Bible, but I also disagree with the idea that Autism is a gift from God. Our children are gifts, and precious ones at that, but the Autism isn't. It has it's up sides and silver linings at times I believe, but it definitely hurts both our children and us as their families. And a lot of the time, the hurt outweighs the silver linings by quite a lot.

    And the "vegging out"? Anyone who was completely honest would have to do this at least once in a while to even survive. We're not perfect just because we have kids that require more out of us as parents. We're still human and we still need a life too. If we don't do even the small things for ourselves we would burn out and then who would be able to be there for our kids? :)

    I also disagree with the comment God wouldn't give us anything we couldn't handle. That is actually quite the opposite of what God tells us in the Bible. He won't let us be tempted beyond what we can handle is the true quote, but as far as not giving us more than we can handle in life? He actually promises us that he WILL allow more than we can handle to happen as it is supposed to help us learn to turn to Him for help and comfort and growth. He doesn't give us the trials, pain, disabilities, hardships, ect. but I do believe He allows some of them to enter our lives with the ultimate goal of growing our faith and making us stronger.

    This is how I believe and don't worry, I won't be mad or leave or anything like that if you don't agree. I guess I just wanted to let you know I'm there with you on a lot of this and share with you a little about where I stand with faith like you did for all of us. :)

    ReplyDelete
    Replies
    1. Amen...God doesn't "make" things happen, he just gives us strength and grace to get through it, if we believe, love and trust him.

      Delete
    2. I also am a believer, but don't view autism as a "gift". I believe it is a by-product of the fall, but regardless of that, I am hoping to share some kind of encouragement here. I do happen to believe that God is sovereign over all and that there is a plan for my son - for all our children. I don't know what it is, or why. I don't think it's my place to ask. But this is what I cling to, and even if everyone disagrees, I hope there will be a nugget of hope and encouragement.

      http://hopeinautism.blogspot.com/2012/01/joy-in-suffering-and-other-paradoxical.html

      Delete
  12. oops lol sorry, I just noticed how long that was. lol I tend to talk a lot. Sorry about that

    ReplyDelete
  13. We got so much in common,,thanks for posting this.

    ReplyDelete
  14. You said exactly what my husband and I have been saying for 8 years:) I agree with you 100%....we have lots in common-thank you for this!!! And yes, what is that little white pill?!!! Kate wells

    ReplyDelete
  15. I know how you do it AD. I have to do it too. My son is mild. so mild that on the rare occasions that friends or family see him they say "whats the big deal, so he cant talk as well as most 5 year olds" stuff like "hes so well behaved, hes an angel"

    I get to sound like a complainer when i say that going to work is getting off the job, and leaving work is time to go to work. I get the judgemental stares from people who drop by unannounced and find my house a jumble of toys and worn clothes strewn about while a 5 year old sits staring at a computer screen in his underwear.

    noone understands that when i notice the subtle signs of an impending meltdown i rush him up and away from the crowd to a quiet private place to either steer him away from a meltdown or bear the brunt of his awesome heart-shattering destructive power.

    everyone says "being a single dad must be tough" then when they see my son with his face buried in a DSi they say "do you just let him do that all day?"

    the teachers at school see the mess in the car when i pick him up from school and i get those stares. you know the ones. and god forbid someone engages me in a conversation in a parking lot. i feel the need to walk them away from my car and towards theirs. even if im late and have no intention of listening to a word they say. i feign interest, seat them in their car and walk back to my car. just because those stares have become a little piece of my sons condition that i cant quite get used to.

    if this is a test i want a do-over. at least have it be an open book test. the only thing ive learned from a bible about how to cope with having an autistic son is that you cant leave ANY book on the coffee table.

    if the bible thumpers came over to see my "little angel" as they call him tearing leviticus from the binding how quickly would their opinions change.

    ReplyDelete
    Replies
    1. My house and car are the same so don't let what other people think or say worry you, and yes I know that's easier said than done, your doing the best you can and that's all that matters, and if this is gods way of saying we are super parents I'd sooner not be, yes I love my son but the older they get the worse it gets my son is now purging after every meal, no one told me they can end up with eating disorders and I don't mean fussy eaters I mean eat go to the bathroom and throw it all back up. Anyway I think your doing a great job on your own.

      Delete
    2. LOVE it - the only thing I've learnt from the bible about coping with autism is not to leave ANY books on the coffee table :D
      Humour has become my religion AD, and seeing the kindness in the unlikeliest of people.

      Delete
  16. Love this post and every other one you write. You put humor into my situations, so thank you... even if you don't mean to ;-)
    And I agree 100% w/ ASDSingledad, my son is higher functioning and I find myself having to point out his issues when they arise so people don't suspect me of having a little angel when he is anything but!

    ReplyDelete
  17. This is an amazing post!!... You'r stories bring tears to my eyes, they really hit home..

    ReplyDelete
  18. Autism Daddy,
    People say things that they think will help. They really have no idea about it (autism) I understand your views. Of course I have heard the same things. There is a 'religious' couple I know and have contact with that are both a blessing and a thorn in my side. We got a long letter on DISCIPLINE & how the child should be spanked (if we love God) I must also say that this particular couple have never had kids..But they seem to have all the answers.
    I had a friend from an AA group, that went with me on treks 90 miles away when my husband needed a liver transplant. I was such a worry wart. One day, she said a remark and it stuck with me. It really helped to to accept things. Her remark was "IT IS WHAT IT IS" I hope this helps. HUGS

    ReplyDelete
  19. Excellent post, and I completely agree. As the father of a son well on the spectrum, I can say without equivocation that we're just parents, humans, doing the best we can in a tough, and sometimes magical, situation. I noted to someone the other day that those who actively pray in our autism community have children who fare no better than those of us who do not. Does God not listen to them? Does God not care? No, God has nothing to do with it. We are in this alone.

    ReplyDelete
  20. I wish my daughter had a father like you, what was good enough for me wasn't an option for her and I left him when she was three and her NT sister was one, unfortunately his girlfriend made a lot more money than I did and he got custody since he was able to stay at home with the kids and had been there since the day they were born ( 100% disabled, my ass) and I worked 50-70 hrs a week (needed the income and insurance) I finally got her back when she was 10 and virtually uncontrollable, she would have fared better had she been raised by wolves, stuck in a room watching the same segments of Blues Clues most of her life she is nearly 13 now and still not potty trained, suffers from severe emotional outbursts, only communicated by screaming and self abusing. I get through life believing everything happens for a reason and I am just not privy to the why. But after 7 yrs of infertility, surgeries, fertility drugs and being over 30 when I had her, waiting another 4 yrs for her to outwardly acknowledge my existence, another 3 yrs to hear her say the word "Momma", I am grateful for every minute I get with her, and as time progresses and she improves, I try to tell myself he will let me have her sister when she hits puberty, she is as outspoken as her sister is non verbal and will soon cramp his style to the point he can't handle.

    ReplyDelete
  21. I am a devout Christian and God gets me through every day. WIth that being said, I do not believe God gave my son autism anymore than I believe he meant for someone to be murdered or hurt in a car accident. But he gets me through the day and helps open doors I couldn't on my own. :) Love your blog.

    ReplyDelete
  22. I find God through meditation. I need something to get through the days.

    ReplyDelete
  23. I do love your honesty in this post. My husband is a protestant minister, and when I was first grappling with autism, people would call me (those close to me), and they would naturally ask: "how are you?" I would reply: "I am thinking about becoming an atheist!" An autism diagnosis can shake one's faith to her core, and it did mine, but ultimately I came full circle back to my faith. Couldn't do it without God, even though I tried. :-)

    ReplyDelete
  24. thank you for your honesty. what a relief!

    ReplyDelete
    Replies
    1. I love the honesty as well, as I do a lot of lying just because I don't want to go into everything with everyone who asks about the kids but don't want to be rude at the same time. I love reading your posts. I hear the god thing more than I ever care to. Please keep the posts coming, I feel a closeness when I read them. Thank you.

      Delete
  25. Very true. I have a son with autism. My marriage was not strong enough to handle one more problem. We divoced and I was a single working mother with a 3 year old son , 8year old daughter. To say I have heard that line is a understatment. You do what you have to do daily. We are normal ppl without super powers. We just keep on keeping on. I will say that I feel GOD made me stronger. God does not trust his special needs kids with just anyone. Yes u were picked, as I was. Not to say it is not fair but who said life was fair. Did you ever meet anyone with a child autism that was a low life person???? I nerver did. To say you were picked and blessed i have to say yes. It is hard everyday, every minute. I would not trade my life for anyone else's child. You and I are not perfect but we are perfect for our children. Don't underestimate yourself. You are normal , normal feelings needs. wants ect, but you see you are special. To say ur not is to say I am not. I must say ur wrong, ur special and I thank GoD for picking you for your child. I would never want your child with anyone else. U and I are hand picked. anyone anywhere can be a parent, not everyone can be a parent of a special needs. Thank you . I appreciate your blog, but I do think you are special.

    ReplyDelete
  26. I so agree with you on this. When people tell me that we were picked by God for our son, because we are special people, I hate it. To me, it feel like because I am a good person my son has to struggle with life everyday. Thanks but no thanks.

    ReplyDelete
  27. Agree with you 100%. I am not religious, don't think my daughter's autism is a gift, and am far off from being the perfect parent, let alone perfect autism parent. Thanks for sharing. I could have written this myself.

    ReplyDelete
  28. This is exactly where I'm at also! It is so hard sometimes. Thank you for your page I really enjoy reading it and with the helpful tips.

    ReplyDelete
  29. amen, AD, lol! this was very well said. we too have days where we just let her run amuck. I mean, honestly, if WE are burned out just trying to accomplish all these things for them, imagine how they must feel? we all need a break :) and a little selfishness :) I am thankful God gave me my daughter because, as you said, she is a gift! the autism? well, maybe not but, it makes her who she is so that in itself kinda makes it part of the gift, yes? :D

    at any rate, keep bein real-that's why we follow you! no matter what your relationship with God, have a blessed Easter! :)

    ReplyDelete
  30. Don't ever feel bad for taking a break.. we all need that break. I don't think you're a bad parent for not keeping up w/ his supplements or food or any of that either.. I think you're great parents.. you've made the best with what you have.. and Kyle is a blessed little boy to have you. I have 3 mentally handicapped children too, and I don't do any of that either.. if that makes us bad parents.. well oh well. lol

    ReplyDelete
  31. New to your blog, and for that I sincerely believe I have missed out! Thank you for keeping it REAL. Our boyo is considered HFA, but my question is always WTF does that mean? He isn't even interested in potty training (he's 5), he can't have conversations really, he doesn't like to be touched unless he gives pre-approval, makes crummy eye contact, and is currently testing in the "warning zone" next to Intellectually Disabled. So, HFA...What the what? Anyhoozle, after we adopted our boys, and, of course we knew all about their previous lives, and add in the ASD diagnosis, learning disabilities, delays and psychological issues, I pretty much figure God hates my sons. Therefore, The Big Guy is kinda low on my list right now. ASD is so not a gift. My boys are two of the three lights of our lives, but ASD...*raises middle finger.*

    Pimping my blog: come check me out at http://unplannedtriptoholland.blogspot.com. :)

    ReplyDelete
  32. ignorance is bliss,

    ReplyDelete
  33. Godless asd family here. Ive actually wondered if parents who don't believe in God have a higher rate of asd kids. Not because were bad but because were smart ....

    ReplyDelete
  34. Well said, Autism Daddy! I agree with you. I was also raised Catholic and wandered away from that years ago. I don't believe that God has the power to prevent bad things from happening to good people because if he did, he would. It's as simple as that. I don't believe that everything happens for a reason. I can't imagine any reason that a child should have to suffer with any disability. I don't believe that when we die we are going to find out some compassionate reason and say to ourselves, Oh yeah, now I see" It's not gonna happen. However, I do believe that when we are judged, God will surely take into account the suffering we have been through and our eternity will be better for it.

    ReplyDelete
  35. I could have written this post. Thank you for saying what I have been feeling for years. People are more than welcome to pray for my son but don't tell me that's what I should do to help our situation. Those people aren't there for the diaper changes, distribution of meds and all of his little perks that come from being Severely autistic. God has nothing to do with it. If he exists I want an explanation but I don't buy into the whole chosen thing.

    ReplyDelete
  36. i dont follow religion in a conventional way, but i take notes of all the good ways or ideas from all religions whatever they may be and im in no way perfect i can understand how you feel who wouldnt be happy if their child could function in the world better or be able to look after themselves without prompting, how much we learn by having children on the spectrum we dont judge people when we see their children having a meltdown in a supermarket/ store as we know how hard it can be.but heres what i think you dont have to say prayers in the conventional way you can just simply talk to god/higher power no one religion is better just different ways of searching for contact with god/higher power just like all the different people that come from different countries but the same planet, we all breathe the same air its just recycled through the plants and blows around the world through the air currents. my belief is we are on a journey of spiritual growth and that we come to this earth to learn as in heaven god heals all of your earthly conditions so that you are whole again. it might not make sense now but when you return to heaven you can see where you can improve and where you grew in your learning in this life, i also believe that roles could be reversed in the next life (i do believe in reincarnation) and think of the how the people that have these disabilties have made a choice to come here with this in mind, what strong and caring soles they must be if you think about it you can start to see how were connected even in small ways. look at how far you have come as a parent, a person ,a husband/wife and what you still would like is to find a religion, autism shows us most of all you dont have to see the world like everyone else you can see it in many different ways but im not enlightened as many people claim to be im just a dad ,husband, a person trying to understand and cope with a child with asd and it makes you question everything but you just have to accept that you have things a little bit different/harder in the way we do things. everyone needs quiet time to vege out or to regroup for the next round its not easy being a parent of a normal child and its harder when they are a special needs child so we cant be right all the time we can only learn by our mistakes so dont worry about offending us as religion is about tolerence, forgiveness, appreciateing differences, love and understanding and if someone cant understand or takes offence at what someone says its just an opinion and we need to see it from their point of view and that can be hard sometimes. sometimes the right way is the hardest thing to do but it gets easier each time you encounter the same situation.peace and love to you and all your familys

    ReplyDelete
  37. <3 it! Feel the same way, where's the gift recipt. I'd like just my son , keep your gift of Autism. And you are right , we do what we can and push on! You Rock :)

    ReplyDelete
  38. Wonderful post. We are ALL different... from those that see obstacles like this as strengthening, to those like me who believe that there is a higher power, but he/she doesn't micro-manage. For me... I am still skeptical of vaccines, and no one anywhere has presented a lock-tight argument to convince me otherwise. Wife is devote, and it DOES help her... and I am kinda jealous sometimes (and when we ever receive help... it usually comes from her church. Thanks for this blog!

    ReplyDelete
  39. I couldn't have said it more accurately. I hate that autism was thrust upon me and will never think it's fair. One thing that helps me is to make myself notice those who are actually less fortunate than I am. They're a lot harder to find anymore but there are still plenty of them. It's just so easy to only notice those who are much for fortunate.

    As for religion, I was brought up in the Lutheran Church but have long since moved away from organized religion, long before my life was affected by autism. I just can't get past the idea that, for almost everyone on this planet who is religious, they practice the religion they were brought up in AND they're sure that their religion is the one true religion. Something just doesn't equate there for me. But I've also missed the community that it seems you can only find in a church. For years, I've thought it unfair. I know I could've gone anyway, but I just can't be a hypocrite and say I believe it just so I can be there. But I recently attended a Unitarian Universalist church and, I must say, I think I've found my community. If you feel you need a community (besides autism support groups), I suggest giving your local Unitarian Universalist church a try.

    And keep the posts coming! They help us all more than you know.

    ReplyDelete
    Replies
    1. We are Unitarian Universalists too and my autistic 10 y.o. daughter sings in the children's choir at church. When strangers say things I don't believe in about God blessing us with a special child, I remind myself that they are trying to be nice. This kindness touches me and often brings tears to my eyes. -- Meg

      Delete
  40. You are right autism daddy! I hate it when my mothe-inlaw tells me Im going to heaven for sure becaue Im taking care of my son! WTF!!??

    ReplyDelete
  41. I have posted on here before, and I'll say it again. THANK YOU FOR NOT REALLY CARING WHAT OTHER PEOPLE THINK. Thank you for speaking your mind, being honest...and just telling how it is for you. It is refreshing. And this particular topic...here on Easter Sunday is perfect. Or ironic, or whatever.
    I just dropped Easter baskets off to my kids at their dad's house, didn't get to see them (not my day). My son can talk, so I am lucky, but it is all prompted. Do I feel sorry for myself. You're damn right I do...I want my children to tell me they love me because they can say it on their own. I want them to get what an easter egg hunt is, and care. I'm irritated that they don't share in my childhood joys (and yes, I get that that is my issue..they don't know what they are missing). About your subject. I agree....what all loving God would make children suffer like my children suffer. The rest of us...sure, we can learn from our mistakes....but why, why, why would a child be forced to suffer in as much pain as my oldest goes through? Don't get it, don't believe it..and yes, we hang on because we have to..NOT because we are some super hero (although being a single mom, it sometimes feels like it). Again, thank you for your bluntness, openness, and fearless posts!! You continue to rock in my eyes..just because you stand and say what you think. Kuddos!!!

    ReplyDelete
  42. From one so-not-perfect Autism mommy to another non-perfect Autism daddy, thank you. It's so nice to feel I am not alone and we all are doing the best we can. God Bless (no pun intended)
    A Autism & Fragile mommy

    ReplyDelete
  43. I am so grateful that my friend linked me to your blog. Now I will say I am pretty spiritual (I'd like to think) but I, too, do not believe that God put Autism in my son's life (he has HFA)however, I do believe my son is a gift from God. And I do rely on God to help me deal with my son DAILY. I pray for patience all the time, believe me.

    I find myself telling family and friends and my son's Drs and therapists...quit trying to tell me how to fix him...he's not broken. Autistic kids and Aspie kids are EXTRAORDINARY just the way they are. Would we prefer our children be "normal" well that's a big "DUH." It's not because we don't love them for who they are as they are...it's because we wouldn't wish anyone's lives to be full of ridicule and teasing and disrespect from other kids...we just have to help our kids thru it and wish we could slap lil punks (and sometimes the punk parents) who make our babies cry. But also, as a parent of a NT kiddo, I still have to do this with her. If I was going to make a big wish for something, it wouldn't be to fix my kid, it would be to fix the world. Make sense?

    KUDOS to you!!

    ReplyDelete
  44. Just adding my voice to the chorus of agreement. My husband and I have the same feelings you and your wife do. We just don't believe we were "given" autism as some kind of gift. We don't do special diets, we let him use the computer a lot, and we do the best we can to love him and give him the best life we can. It's hard. Thanks for voicing what a lot of us are thinking.

    ReplyDelete
  45. Thank you so much for having the guts to say this. it is what I certainly think also. I used to feel bad / guilty when people would say that the autism in their life is a gift, and they would not change their son or daughter for the world. I would be thinking, Gift?? What a crappy gift!ummm... I would change it if I could! I would love to take away my sons autism, and his and our pain. Thanks for saying what I have not had the guts to. Awesome!!

    ReplyDelete
  46. Just be THANKFUL, appreciate life, look at the positive and STOP chasing the negative, is it really THAT BAD?? WTF? We all have days where we want to rip our hair out and drink a six pack, and take "little white pills" whatever that means.. because we can deal with reality... What is reality?? When I take my ASD child to Boston Childrens and I see kids that are bald and going through kemo, and kids in wheel chairs that will never walk, kids that have tubes running out of their bodies ......PLEASE WAKE THE FUCK UP and appreciate what you HAVE.. Its Not so BAD

    ReplyDelete
  47. I am a Baptist Pastor in the country of Cyprus, but I found this post sidesplitting funny and Im very happy to be a member of this blog. I have a five year old son in the spectrum and could relate to many of the comments. I can honestly say I have not yet been able to reconcile Autism and my faith in Christ yet. Im still trying to understand it all and make them fit into each other! Its a toughie...

    ReplyDelete
  48. I SOOOO understand on the "part of God's plan" thing. THAT is ridiculous. "Never more than you can handle"? REALLY? How many public meltdowns have those people been through? I had someone tell me once that "Jesus puts us just where we need to be." I was quite impressed at my self-control. (I have a spectrum kiddo, too. Does it show much?)
    I don't think any of these notions are biblical or even Christian, regardless of how often Christians repeat them.
    My hope and belief is that God has the power to bring something good from something bad. I don't know how, I don't know what. But that is my hope and my prayer . . .
    Lisa

    ReplyDelete
  49. Wow, I could have written this myself! Lapsed Catholic and all, LOL. HATE the gift from God crap. My two boys with autism would be a lot better off without that "gift".

    ReplyDelete
  50. Ok so God did not give your kids autism. Humans were not created to be independent from God. The bible says: To earthling man his way does not belong. It does not belong to man who is walking even to direct his step. (Jeremiah 10:23) Sadly, our first parents felt they could be independent from God and still be successful, which resulted in imperfection. Consistent with the laws of genetics, we inherited that imperfection and death (Romans 5:12) The reason God allowed Adam and Eve to live and procreate is that his right to rule was bought into question. God is allowing us time to try all types of political, social and economic and religious systems apart from Gods guidance. WE FAIL TIME AND TIME AGAIN. What us Autistic parents are dealing with is "critical times hard to deal with" (2 Timothy 3:1-5, 13). Gods tolerance is coming to an end which has been prophesied in Matthew 24, and we are seeing this right now. God has promised to "wipe out every tear from their eyes, and death will be no more, neither will mourning nor out cry nor pain be anymore. The Former things have passed away" Revelation 21:4. For more information please go to this site: www.watchtower.org

    ReplyDelete
    Replies
    1. Really? you see this as an opportunity to convert?

      Delete
  51. Hi Autism Daddy! I also grew up a Catholic. When I got a job in Austin, TX from the Philippines, in my second year there a friend invited me to attend a bible-based church. I have heard priests who gave good sermons but they are not a lot. In this bible-based church, the pastor gave relevant teachings. You can take down notes. And there's free donuts and pigs-in-a-blanket :) Fast forward to the future, our family is now in the North TX area and we attend this church (http://www.lifepointplano.org/). While my husband and I attend the service, my NT daughter goes to the 2nd graders kids' class and my ASD kid goes to their room for special needs kids. My 5-yr-old ASD daughter loves it there. They watch Veggie Tales, there are toys, they color papers with bible verses written on them. I love the husband and wife team who attends to the special needs kids in our church. Also, the rooms where the kids go to are all viewable from the outside, and there are church staff roaming around to see if everything is fine. The kids are assigned numbers and in the event that the staff needs the parents, they will just display this number on the screen to notify the parent(s). I hope you find a church like this in NY.

    The true test of our faith is when we continue to trust God despite our circumstances. I know it's not easy but I hope we can be like Job, who despite losing all his children and all his possessions still managed to worship God by saying "Naked I came out of my mother's womb, and naked shall I return: the Lord has given, and the Lord has taken away; blessed be the name of Lord."

    ReplyDelete
    Replies
    1. I meant fast forward to the present (not future) :)

      Delete
  52. When my daughter was just diagnosed, I often listen to this song. I hope you find some comfort from listening to it. I especially like the part of the song:
    "Sometimes He comes in the rain
    And we question the pain
    And wonder why God can seem so far away
    But time will show us
    He was right there with us"
    http://youtu.be/2goGIDFssl4

    ReplyDelete
  53. http://www.youtube.com/watch?v=2goGIDFssl4

    ReplyDelete
  54. I agree with your blog, very well said, proud of you autism daddy, salute you...for me accept everything with my son,very hard to take care alone as long as i am healthy and strong, patience all the times, specially playing with hands on the mouth, hard to brush his teeth and always slap his ears wherever want to... thank you and more power to you and it's a great help for me all the way...be safe always and your wife and kids too. Angelzmom/kristian

    ReplyDelete
  55. Couldn't have said it better. We had the same situation - three miscarriages and then we were blessed to have a son. We are not blessed that he has autism -- we adore him but it is hard. Great post.

    ReplyDelete
  56. Alot of times I feel people just say those types of thing to say something nice. Something comforting. I truly believe children are a gift and should be treated like that regardless of their difference/disabilities. And sometimes the path less traveled is the one that is really worth it, its just hard to see that while your traveling it. I would never stop reading your blog because of your feelings, its a hard road and everyone's struggles are different.

    ReplyDelete
  57. My mother died of cancer and a good friend of mine has a special needs child, we were talking the other day about how people say God only gives us what we can handle or god chose us because he knew we could handle it etc. etc. We realize people just say those things to make us feel better but sometimes it can anger people, not because they don't beleive in god but what's going through are heads is why take my mom at such a young age when she's never done anything wrong or why give me a special needs child when I was a good person and took care of myself when I was pregnant. When things like this happens to good people you start questioning god due to why me, why us...the good people. Why take my mom from cancer when their are child molester, serial killers, etc and for my friend who has never done drugs or bad things while pregnant, why her child when there are women who do drugs and drink during pregnancy and have healty babies.

    ReplyDelete
  58. You did awesome explaining this.. i am about where you are on this subject honestly. I dont know if God MADE Isaac autistic or not. I would like to think not.. regardless if He did or not (i will never know apparently) I prayed for a cure when i learned he had it.. (back in 2010) (he is 5) and my answer came as: I am the one that needs the cure, and if i want him to be cured my job is to love him, teach him, and accept him for who he is.. I wasnt 100% happy with that answer... but thats what i got and that seems like thats all i CAN do...

    You are awesome, Autism Dad.. you kick ass. my poor husband could never sit down and talk about son like you do.. it hurts him too much.

    ReplyDelete
  59. This made me cry. I am grateful for your honesty, and you definitely managed to say something that I have never been brave enough to say. Well done.

    ReplyDelete
  60. Non-practicing here....or in limbo, as i call it, as we are never non-Catholics, huh.

    Our experience made the definition pretty easy. Molly Kate was born with Trisomy 21...Down Syndrome. That could be considered a Blessing from the Heavens, as she had so much to teach us, and pretty much CHANGED each and every member of my family. We are a little calmer, we are more patient, we celebrate every day, we took Down Syndrome and spread that love to all in the Special Needs family.

    Autism? grrrrrrrrrrrrrr not so much the blessing. It snuck in and stole so much of what made me love my little social butterfly. I read some parent refer to being 3 yrs past denial, and that is still how I measure the time we've lived with this.

    I'm angry...i KNOW somehow i caused this, unknowingly, and i KNOW NO-ONE is EVER gonna cop to the cause.

    But, now that I'm 6 years past denial, it is getting easier, and we find new joys, and new smiles, and new accomplishments.

    Definite NOT the Blessing the first was, this is a ....a ....a....an ENVIRONMENTAL condition that has attacked us.

    I'm still working on the anger part.



    e & molly kate

    ReplyDelete
  61. My guess is you don't have the time or desire to read all the posts, but I figured I'd write this small paragraph just in case.

    I too have a son with Autism, he is now 16. I too have heard all the things you speak about in this post. I too couldn't believe people would say such things when they get to walk away and think they've actually made a difference while they go back into thier own world. I too have seen dads with "regular kids" and think if only my son could talk we could have that kind of relationship. Bottom line is it sucks all the way around.

    What I will tell you is this. It doesn't get easier but it does get routine. I took my son to a fireworks show last night and the people looked at us like I was some sort of weird guy with a boy. He sat and watched the fireworks well enough but plugged his ears while he sat on my lap. Saying that, what has changed over the years is my ability to enjoy the moment with my son without caring what others are thinking or talking about. How?

    I too was not just irritated with people that said he was a gift or God wouldn't give you more than you can handle. Truth is God gave me way more than I could handle. I was angry at God for giving me more than I could handle. I was angry for a long time. Then one day I crossed a divide and I don't know how or why. It is what it is as far as what I have with my son. I stopped trying to be like those other dads and did what I would do if he was a "regular kid". I simply would take him places and do things that he liked. Our time together became about him and not me.

    We slowly evolved into doing things like going to firework shows but we'll never be able to go to a MLB game or other things that "normal kids and dads" would do. You know what? that's okay. I have my son and he is someone with Autism.

    I know this is long but IF you read it and want another perspective on loads of stuff that we have gone through all you need to to is ask, or post something and I'll reply. We had lots of small vicroties and our progress was made in inches not feet or yards.

    Keep your chin up. Enjoy the moments you have, Take the breaks you so deserve, and one day this may all make sense... but probably not.

    Shannon

    ReplyDelete
  62. I feel as uncomfortable writing this as I suspect you may have felt writing your blog. Religion is very personal and I feel on shaky ground offering any advice and I have no idea what part of the US you live in, so my suggestion may not be available.

    I felt you need for some spiritual support and your observation that Scientologests seemed content or happy and you longed for this. Myself and my X were in a similar point when we were introduced to Unitarian Universalism

    The UU 'Church' (and many members are not keen on the word 'church') is not strictly Christian and leans more towards Humanism. There is little 'God talk' and less dogma. We strive for respect for all people, fight for justice and compassion and the ultimate personal responsibility we hold for all our actions and inaction while still embracing that we are all flawed and will fall short of our visions This is where the compassion bit comes in: we must be compassionate towards ourselves as well as others. We were struck by how grounded, open and generally happy these people seemed. I believe that you must take care of yourself so that you will have the greater ability to care for others.

    No intend to offend. jrt

    ReplyDelete
  63. "But one thing I think you should know about Autism Daddy is that I do not believe my son having autism is a gift from God, and that God only gives us what we can handle."

    I think I love you! I can't stand it when people tell me that and I hear it a lot.

    ReplyDelete
  64. I grew up in a Catholic family, moved on to being a Protestant, experienced conservative and liberal churches, holy rollers, hand raising, emotion centered religion and everything across the gamut. Nothing I learned in any of those places leads me to believe that God, All Powerful, Loving and All Knowing is the cause of any of our "Troubles". Neither is he the cause of our "Blessings". God is present all the time (Omnipresent), but he doesn't take an active role in dumping horror or sprinkling joy in our lives, he's just there, like your Momma and you Poppa, to give you life, and someone to look to when you can't handle it. His intervention must be limited, or we will not be individuals with self determination, and will not love him in and of our selves, but as a result of manipulation. It's that simple, and that disappointing. Our ASD son is 3+ years, and a joy to us both, as we work with him and his teachers to help him be the best HE can be. Not perfect, not "All Better", just himself, able to do what he does. We love him, and he loves us, that's what it's all about, really.

    ReplyDelete
  65. Well said. I agree with everything you said. Hugs to you and your family. This is a hard road to travel (yours being tougher than mine as my girl is mild to moderate). I am so happy that you and your wife are a support to one another. My husband and I are, too. Reading your letter to the runaway dads the other night made me think about how difficult life would be if my husband didn't come home every night after work. I don't even care to think about it, really. Anyway, even though you say you're not perfect (who is?) I think you're an amazing daddy! Kyle is so lucky to have you and your wife. To me, you both sound awesome!!!

    ReplyDelete
  66. I would just like to say that I respect your view, but I also want to say that there is a massive difference between catholic( religion ) and being a Christian ( not religion )..you can see the difference at your local church..I have four kids on the spectrum and a 5 month baby boy who most likely be autistic, so I totally understand. But without my god, in my life I would most likely be in a mental hospital or dead, as my depression had taken over my whole life, but I am now 5 months free of depression and not on any pills because I gave my heart and life to Jesus and he took my depression away..Jesus bring great comfort to me to face every day with a positive spirit, not like before were I didn't want to get out of bed and everything was shit and negative..I know my autistic kids are a gift, they have changed who I am, I am strong, compassionate, understanding, patient, and a fighter, if someone try's to give a hard time I am like bring it on I have autistic kids and I will kick your ass.. I hope you find some peace in your heart..

    ReplyDelete
  67. I just wrote a post about expectations and how I am done with them. And I'm tired of people judging me and judging myself. So, I was relieved to see your post. I'm not alone!!
    God is in my heart. He has comforted me my whole life as a foster child and as I lived on the streets as a young adult. My Son has aspergers, life is tough around here. I don't feel God gave this to him because I could handle it. I believe Kaden is a gift, All my kids are(most days!), but his ASD not. Thank you for your Blog, I'm new here and I have loved reading your past posts so much!!!!

    ReplyDelete
  68. You haven,t lost me, I,m with you 100%. My lad is now 19 and his condition is a constant daily struggle for both of us, with no end in sight. All I can say is love has got us through this far : )

    ReplyDelete
  69. So I'm one of those people who would say "I don't know how you do it"......but not to be saying that you're a saint, just because I have four kids who don't have disabilities and I don't know how i do it. Also because I have been working with people with intellectual disabilities for 16 years now, and at times have worked with people with severe autism and I simply could not do it. But I know it would be completely different if it were my child. I've seen parents throw up their hands in desperation to get help, and in turn, leaving their child to be cared for by govt agencies. I take my hat off to you for being so bloody honest, and I get it. So go you!! x

    ReplyDelete
  70. My faith truly does get me through the day. I have three autistic children, on being severe and I can see why people wouldn't believe it is a gift of God. I personally believe that my children are a gift and because they come with Autism, it too, is part of God's gift. You see my children, don't turn away from hard work because they already work ten times harder than most children. The don't judge people by what they wear, or the color of their skin. They don't like anybody until they are comfortable. I believe that they have a special relationship with God where He has introduced Himself on an entirely different level. I don't know think He gave them Autism, but I do believe He gave them to me for a purpose. I have no clue what that purpose is or why He thought I would be the one that should take it on, but I don't doubt that there is a reason. I hope that one day, He shows you His purpose. I can say that and still respect you for posting your true feelings. We are far from saints ourselves, and boy the stupid mistakes we've made stack higher than the things we've done right. I read your blogs because they make me smile. I don't know you but through your blogs and facebook posts, I can truthfully say, I admire your willingness to share what you really feel.

    ReplyDelete
  71. Where does one even start? Ok...Autism a GIFT from god??? not in our house it isn't. Everyone is entitled to believe/feel whatever they wish. I firmly believe that my DAUGHTER is a gift from god...but, the Autism has NEVER been considered a gift. Gifts are not trying,nerve racking, nor are they reason to cry at any given point in the day when you just don't think you can take anymore!....I'm right there with you Autism Daddy....no we aren't perfect, yes, we are probably selfish..but, we are only human and we do what we have to out of the love we have for our children. ANY parent of an ASD child who says they NEVER feel overwhelmed,sad,or any of the other emotions we feel are completely delusional!

    ReplyDelete
  72. Hi there, I'm one of the editors of The Thinking Person's Guide to Autism. We've posted some entries about religion & autism, mostly about finding a welcoming community.

    I posted a link to this blog post at The Thinking Person's Guide to Autism FB page, link to post. Often folk comment on the FB page instead of coming back to the original post.

    ReplyDelete
  73. I totally understand how you feel. I've lost hope. I feel lost. I love my aspie son but can't come to accept the diagnosis. Some days are harder than others. I will be honest and say that I feel jealous of my friend's " typical" kids and their every day achievements. I never say this because I know people will give me crap about it but it's the truth. I'm angry and frustrated. I wish I had enough faith to get me through but I don't and I'm tired to pretend I do. I have a wonderful husband that supports us and loves us. I don't have many friends anymore, I feel broken inside....wow sorry for venting.
    I enjoy your posts a lot! Keep it up.

    ReplyDelete
  74. Wow, feels like you can read my mind... Or actually I thought you might be my husband writing... It is exactly what we have to cope with too (+ severe Epilepsy and some physical disability)...thank you for this blog. Oh and I also want this white pill...

    ReplyDelete
  75. This sums it up.gif me.....thanks for speaking for slot of us!

    ReplyDelete
  76. My sister said the other day that God doesn't give you more than you can handle...I don't believe that otherwise there would not be any people committing suicide. I believe our children are a gift from God. Autism is part of our children. I don't think of it as a bad thing. My son asked if I wished my daughter wasn't autistic, I honestly said no. She wouldn't be the same girl, it's who she is. I want her to be the best she can be with what she is, the same as I want for my typical son. I understand when you say how hard it is. My daughter is severe as well. The non-verbal, hitting (herself and me), biting ( i have the battle scars)little sleep, seizures, breaking things, endless hours of therapy, the cost, the looks in public, the loss of friends that just don't get it, kind of autism. I feel guilty, she's on the computer now so I can have a short break, but she loves it and she needs that down time too. None of us can be perfect parents same as no kid can be a perfect kid. My husband bailed on us because he couldn't handle it. I don't blame her for him leaving. We are better off with out him. After her first seizure,when she quit breathing for awhile until I got her breathing again, he asked me if it was awful that he wondered what our life be like if she hadn't made it. That sickened me. I told him that was the difference in us he could imagine and I couldn't. I don't spend time thinking about "what if". I feel guilty sometimes that I'm not doing enough, but don't all parents. We are only one person we can do only so much. Don't try to think too deeply about what God gave you. You have your son and I am sure he is amazing, just as you and your wife are.

    ReplyDelete
  77. Totally understand, I have one very low functioning and one high functioning, 3 kids total, 2 with autism and a dead husband. I have faith, but not religion. Drives me crazy when people preach to me, or expect me to be willing to accept their idea of God's plan. I do my best, but I hate when people try to applaud me, or correct me... as if they have mastered their life, yet alone, live my life. I think it is so great, that you are honest, both in the good and bad parts of being a parent of a child with autism. When I am honest with people it freaks them out... I think they want to believe that we are perfect, that it's a calling, that we are made of tougher stuff... but we are not. We do the best we can, we learn faster, we don't have the luxury of making too many mistakes... they can be dangerous. So thank you, because you are real, and as a parent of a 17 year old with autism, and a 16 year old with autism, it's refreshing to hear some one be honest.

    ReplyDelete
  78. Amen, I couldn't have said it better, I live in this ASD nightmare too, I accept the good, the bad, and the ugly, but I know Im not alone and tomorrow is a new day, and I find my rest and peace in him.

    ReplyDelete
  79. I'm a Christian, but I do not believe Caleb's autism was caused by God. Why it runs in my husband's family, I don't know, but that's not the point. it is what it is and we have to deal with it the best we can. And considering what we've dealt with in the past three years, I'm not sure that God gives you the bad things to see if you can handle it. Why would He cause my husband to relapse with leukemia and nearly die during my 8th and 9th month of pregnancy with Caleb? Why would He put us through the hell of my husband's bone marrow transplant? And to have a stepson with explosive bursts of anger to the point I sent him back to his mom when I caught him hitting my then 2 year old son. The list goes on and on. Is it too much to handle? You betcha! Hence why I take psychotropic medications and see a psychiatrist and therapist. Parents aren't perfect, but we do the best we can with the cards we and our children are dealt.

    ReplyDelete
  80. i look at it like my son did not ask to be born and certainly did not ask to be autistic and have spina bifida. i feel it is my duty as the person who submitted half of his dna to make sure he is as happy and calm as he can be. i am not afraid to laugh at my son when he is doing something funny. i am also not afraid of any one looking at me or my kid, you don't like the fact that he is doing his stevie wonder impression while doing a passable whale song, fuck you, my beautiful boy is happy and excited, most people will never know the pain and anger we feel at the unfairness of autism, but they will also never feel the unbridled joy of having your kid come out of his own world long enough to hold your hand or kiss the top of your head and then put his head down to be kissed by you. i used to worry about what would happen to my son when i'm gone but fortunely he has 3 sisters who are their mother's daughters, and will take on all comers to defend their bubba! i learned a long time ago to enjoy the small things, it makes the big things easier to handle. as far as religion goes "do unto others as you would have done to you" covers it pretty well!

    ReplyDelete
    Replies
    1. my name is randi, by the way. :)

      Delete
  81. My husband and I say the same thing!!

    ReplyDelete
  82. i love your blog and i have to say thank you for it. i read it with tears sometimes, other times a high five or even a hardy laugh. i am a single (divorced) mother of 3 ( yes three) autistic children.
    i hate when people say " i dont know how you do it" well wtf do you think i would do? they are MINE, i am their mommy i just do. this is not easy and it is not for punks! i can not fathom how anyone can say autism is a gift from god. that is kinda like saying herpes is a gift too. you can live with it but you sure as hell would rather not!
    thanks again for your realness. i love reading from someone who really gets it!

    ReplyDelete
  83. I literally just wrote an email to a close friend of mine that said this exact same thing! It's so hard when people say "God chose you" or "I don't know how you do it" or "God knew you could handle it", meanwhile, you know that they are thinking "Thank GOD he chose YOU over me". It's devastating, really. Thank you so much for this post. Your honesty is so refreshing!

    ReplyDelete
  84. I'm with you on this. I don't believe that God's hand is in "choosing" parents for special needs children. That is way too predetermined for my beliefs. I also was raised Catholic and had a falling out with the church. After "church-hopping" I found a comfortable place in the Lutheran church.

    I have grown in the way I pray after a sermon I heard once, "Be careful what you pray for (you may get it)." I used to pray for patience in dealing with my kids. What I found was a number of opportunities to practice patience but I wasn't 'getting' patience. I changed my prayer to help me interact with my kids the way you (God) want me to interact with them. And what do you know! I was calmer and got even closer to my then teenagers. I also got closer to God. Maybe this is what people mean when they say, "Give it up to God."

    Thanks for your blog. You help a lot of people by expressing what you (they) are feeling. God bless


    ReplyDelete
  85. Thanks for being AUTHENTIC. I don't think God gives us more than we can handle, because I don't think God is a human who sits around thinking about what to do to people! I believe in Universal Consciousness, meaning everyone and everything acts together. $/!t happens and then all we can do is deal with it as best we can. -Zennifer

    ReplyDelete
  86. I have a son that is 4 and has classic Autism. He is non verbal not yet potty trained but he is the most incredible person ive ever met. its been a year since we started battling Autism. Not a day goes by that i question why. I am Christian too and beleive that My son(Autism or not) is a gift from god. With some gifts you dont see the true blessings right away. Same with Autism. people tend to look at all the bad things with Autism instead of all the good. I look at Autistic kids and know that they dont lie, are not judgemental and are the most loving creatures God has ever placed on this earth. Autism is a tough thing i agree to that. Sometimes you just gotta rely on your faith, pray and say GOD IS HERE. God may not make the problem go away but he is certianly going to give you all the tools you need to get thru. I dont know about you guys but with me i beleive the tools he gave me are love, compassion, and patience. I have some of the most frustrating difficult times with him out in public. It will get better in time. I do beleive Carter was sent here to me for a purpose and maybe the Autism just is part of the blessing that we havent found yet. Is it a gift, maybe or maybe not. I choose to not look at that and to Move forward to make my son a better person and my self as well. Good luck to everyone my prayers are with you. I have my own blog too. It isnt as good as AD's here but feel free to check it out. Cartersjourney12

    ReplyDelete
  87. I stopped reading you, Daddy, when you advocated that everyone and his brother with autism should sign up for the disabled license tags/hang tags for cars.....But, on this issue, we are in accord....having autism doesn't make my kid a saint or a hero. Doesn't make me a saint or a hero either for being his mom. I just show up every day and do the best I can. I put the whole thing to bed several years ago. I believe in God and the afterlife and karma. I believe I will know when I die what happened to my son but....it won't matter, then. Something happened, it wasn't God's idea, but it happened. I choose to believe in God because atheism is so depressing (as are the few avowed atheists I know personally). So, I'm with you. Do and believe whatever gets you through the day...and night.

    ReplyDelete
    Replies
    1. I never advocated that everyone with autism get a handicap parking placard... I just put the info out there...Every time I repost that one people misinterpret what I'm saying so I recently added this disclaimer to the bottom of my handicapped parking post...

      ADDED 12/5/12 -- Every time I post & repost this I take some flack because people don't get my warped sense of humor (as you can tell by many of the comments below). I write a lot of my blog with a very "tongue in cheek" style. So consider this my disclaimer...

      Of course, I don't consider this a "perk" of autism, but you gotta look on the bright side sometimes right?. Of course I don't abuse the situation. Of course I know that there's lots of people who are walking and use handicapped spots and have completely legitimate reasons. Of course I don't think all kids with autism should get this or even should qualify for it. But if your kid has "elopement" issues and/or has no sense of danger, and your pediatrician can confirm this then why not get it? Ok, now on to the state's weblinks... Good luck!

      Delete
  88. I read the blog and about half of the comments and just could not read any more ... I STRONGLY disagree ... My 3 1/2 year old daughter, Kayla, is the brightest ray of sunshine on earth ! ... I thank God every day for entrusting me with such a beautiful, healthy, happy, brilliant child ! ... I feel so blessed that I got 1 in about 750 Autistic girls ... I also feel He knew that Kayla would have the Autism and Sensory issues she has when He gave us her to take care of and help navigate life ! ... Even if she was as severe as many of your children are then I as a parent would not feel the way many of you do ... She is high functioning and goes to preschool and excels at counting, shapes, colors, puzzles, and her Ipad ... She loves Mickey Mouse and memorizes anything she wants to ... Her verbal skills were 3 words at 1 1/2 years ... She is almost 4 now and we are finally reaching the point of communication with her concerning everyday life and most anybody can understand her but she does talk in third person ... Her vocabulary includes dodecahedron and icosahedron and any other word you teach her ... But you had better do it right the first time ! ... She is an extremely picky eater and takes forever to do it after arranging it the right way but is healthy as can be ... She throws tantrums at bowling alleys and hates the doctor ... She sleeps when she wants and is moody if you try to wake her up ... She hates to have her hair brushed and is far from potty trained and still uses a sippy cup ... Now with that being said, this took 2 years of constant encouragement and being a parent to get her to this point ... I am thankful to God that he blessed me with Kayla and that he knew I was strong enough to be the parent she needed to have to reach her full potential in life ! ... Her mother is a strong hard working mother of 3 and does whatever it takes to make sure all kids are loved and provided what they need in life also ! ... So, to all of you that want to give the "gift" back, I pray that God will help you and your children in the daily trials that having an autistic child brings and will pull you through this and you will cherish the gift that He has given you !

    ReplyDelete
    Replies
    1. Ryan,
      1. I think high functioning is a lot different from low. So all the things your daughter is doing (good for her by the way) may not be things that lower functioning kids will ever be able to no matter how much therapy and encouragement there is.
      2. you have only been at it for a short time with her being so young. some people have low functioning kids and after 10-15 years on day to day trials, it wears on you a lot more.
      3. good for you that you have faith, that was the point of his initial post. but you need to be open minded and non judgmental toward others that don't share your beliefs because of their own experiences.

      I think you missed the point of the original post and didn't even bother to read it all the way through (admittedly) before you started to judge

      Delete
  89. I don't think it is wrong at all, to let Kyle play in his room while you relax or to skip all the logs, charts, etc. I have a child considered low-functioning autism too and recently decided we need more normalcy not more therapy. After 5 years of being crazy mom, constantly doing EVERYTHING to improve my little guy, I just decided normal kid stuff like playing in his room is good for him too. And good for me. And for his typical big brother. I think we are all happier for it. And to switch gears I also hate the "I don't know how you do it" sort of praise. My child isn't a terrible burden to endure, but my kid who I love just like other parents love their kids. I don't need or want praise or pity.

    ReplyDelete
  90. try a unitarian universalist church. open minded. excepting. bunch of kooks/misfits (the best variety) We have a 4 year old son with autism. needed a community. your posts are refreshing. thank you.

    ReplyDelete
  91. I have just started blogging myself about my ASD family, so it is good to read someone else's life, but I think you may be putting a bit too much pressure on yourselves. I used to be close to God but am so pissed off with him right now that I can't bring myself to talk to him, but I think that is normal when you get thrown Autism to deal with. Unless you are going through it on a daily basis no one else can understand, not even god, although I sometimes wonder if he isn't a bit ASD himslef! Love your blog.

    ReplyDelete
  92. your write it not a gift from god .@@@@@@@@@@ i have autism an it make me mad when i hear this among other dumb things .gibve me a break it not fun to be diff an get treated the way we do at times .im not un happy but if i didnmt have a disabilty life would be easyer

    ReplyDelete
  93. Ryan, if you had the choice of giving your child a pill that would take away her autism, would you give it to her? AD wants to give AUTISM back, not Kyle. I think its pretty clear that AD LOVES his son, as we all do our children. I want my child not to have to struggle, not to have to suffer, not to have to be stared at, pitied, shunned. Yes, BY GOD, if there was a pill that would do that for him, I'd be the first in line.

    ReplyDelete
  94. Nailed it. Parents of kids (and adults) with autism need to hear from other parents of kids (and adults) with autism that it's OK to be human. It doesn't diminish you as a parent or person, nor does wishing that your kid didn't have autism diminish him or her.

    ReplyDelete
  95. Love your blog. Your family sounds so much like mine and I love that you are brutally honest about your life and your thoughts! Keep writing....your posts always make me feel like we are not alone:)

    ReplyDelete
  96. I agree and usually when someone says to me "You must have the patients of a saint", or "How do you do it? I wouldn't be able to" My first reply to them is always the same ...
    "Really? So your saying that if all of a sudden your neurotypical child suddenly was no longer capable of caring for themselves you'd just not look after them and stop loving them because they are no longer able to care for themselves? because what you see as "normal" is a child who will one day grow up move out get married and have a family of their own and be able to do everything that you and everyone else you know can do? Because to me my child has always been this way biting himself because although he can talk to beat the band he can't always understand whats going on around him and can't always get us to understand what he needs, smacking himself in the head and screaming because he's upset that instead of using the green plate this afternoon he has to use the blue one because he dropped the green plate this morning and it broke and I haven't had a chance to run to the dollar store to replace it, because even though he has finally thank god learned to use the toilet but at night he's still wetting the bed but won't wear a pull up because he's a big boy, or the fact that just about every day he goes to school and I get calls to come and pick him up because he vomited and they think he's ill , but in reality it's become a learned behavior because they call me to go pick him up and he didn't want to be there anyway. The reality of it is that what is normal to you is just plain weird to me, and what is normal to me blows your mind because you wouldn't do it for your own child?? sorry mini rant there but I am sensitive to statements like that myself and the hole you must be a saint thing just makes me mad and I don't believe that god made my son autistic to teach me a lesson I needed to learn I think it was just something that unfortunately happened and now we're going to deal with it because really you can only spend so long saying "why me" and not drive yourself insane. No you didn't do anything to deserve it and no there's nothing that will ever change it ... all we can do is learn to help in the best way we can for our children and if along the way we learn something from the experience (aside from the fact that it costs less to replace dollar store items) I'm good with that =)not sure how much of that made sense to all of you because really I'm running on 4 hours sleep until the new sleep aids start working 0.o

    ReplyDelete
  97. Religion helped me stay in a very painful, hurtful marriage for 19 years in which my ASD son was my last child conceived. I am not sure how to go about faith since the marriage got no better. I was doing the therapy for myself, hubby was not. Autism, seeing how my son needed one parent capable of understanding and advocating, etc I knew I could not be the glue in the family with hubby's alcoholism, his denial, his anger which years after divorce turned out to be bipolar, living military life, hubby having been in Iraq a year (so PTSD added) the marriage really began to crumble. I got to MA which I am grateful for because I think the geographical distance from his family helped me and the kids to be safer away from their denial, blame. My son is in an awesome school with awesome services at home which took a few years to get in place. As a divorced mom, I got a school nurse job between 2 psych schools, but school hours are good, they no longer give me a hard time when I am off for a sick kid, kid appts - even tho, mentally it is a lot on top of my personal life. I believe God is love and we are flawed humans and churches are made of humans. So, how I do any of it is not what it was. I figure God knows me whether or not I pray, regardless of how imperfect I do this life and I think my church has become my work place, trying to love other people's kids, giving my perspectives to my co-workers, none of whom have a disabled child while working with them and their families can be hard, and parents - some who know little, are little able to advocate and, as a professional and employee, I can only say so much certain ways about how I think our schools ought to do better for the kids and might do so if the parents had knowledge and knew the importance of their power as opposed to trusting us too much in their need.

    ReplyDelete
  98. Over the past year, first my son was diagnosed with ASD and one month later my wife was diagnosed with breast cancer. Dealing with my sons autism daily, the therapies, the Dr's appointments, the meltdowns, the five surgeries (procedures) for my wife, her appoinments, 16 weeks of chemotherapy, the fatigue, not being able to help around the house, the cooking, cleaning everything and still working in a demanding job has made me question a lot of things. I hate it when people say to me that "God doesn't give you more than you can handle" Reading your blog and the comments posted let's me know that others are on the same similar journey that I find myself now on. Thank you

    ReplyDelete
  99. There's nothing wrong with taking a break from dealing with a child with autism. Here in Ireland, we have state payments to carers (of children or adults with disabilities) which are designed to give respite to carers i.e. money to allow you to take a break and let someone else take over. Now, most carers would say it's inadequate and is not enough for a proper break AND for paying a substitute carer: in fact, many carers spend it on extra treatments, equipment etc. However, there is an inbuilt recognition that carers are human and need a break. Many carers feel guilty about saying their disabled relative is a "burden": the way you put it is excellent i.e. love the disabled PERSON but hate the DISABILITY. My son's autism is nowhere near as severe as your son's but I would rather he did not have autism (as you say in the US) PERIOD!

    ReplyDelete
  100. So now with our new Pope, how do you feel about the Catholic church? I lost my way in the church because of the church's dealings with abuse, gays and women and lastly how they treated the nun's in the past year or so. But with the new Pope I have hope for my religion finally after watching it become something I couldn't agree with at all. I do think the Pope can't be all the priests in the church and can't change how they think but I think the new Pope is more in line with how many Catholics esp younger Catholics feel.

    ReplyDelete
  101. This is amazing, and ironically, exactly what I needed today. THANK YOU for writing it.

    ReplyDelete
  102. You made us smile THANK YOU! All though you and I seem to differ on some stuff .... I KNOW God did not give my daughter autism. This poor girl is tormented day in and day out she is miserable.... NOR do I believe that God deemed my husband and I some kinda hero saints to take this life on. God is good and ANY BODY good would not do this to an innocent child. I am not easily offended... but saying God made her with autism and its a gift from God.... does offend me I do believe in God as creator of the universe and He does help me and give me peace .... I really like your blog and will not be leaving...hang in there daddy :)

    ReplyDelete
  103. In the same boat! Almost all of it!

    ReplyDelete
  104. I am so glad that I found your page, honestly it appeals to me because of the fact that there is no arguing over religion and vaccines. I have 4 kids, one of whom has autism and its not easy. There will always be people who don't understand and quite frankly some people just don't want to. I don't think autism is a gift, I love my son but watching him struggle like he has had to isn't a gift, I agree. He is classified as 'mild' and I wouldn't trade him for anything in this world but the autism I could live without. I give it all to God and I do hope you and your wife find a religion that is for you guys. And don't feel guilty because you guys don't get every single little thing done. We are all human and that means we aren't perfect, no matter what anyone says everyone; even those without disabled children, fall into that. No one can judge you because no one but you is standing in your shoes, we are all individuals walking our own path in life and making the best of it that we can. Just keep on walking, don't worry about the stuff your too exhausted to do, do the best you can. Thank you for making a place where the arguing isn't present, keep hanging on.

    ReplyDelete
  105. So nice to know we're not alone.Thank you to everyone for sharing. The we have been an autistic family for 13 years. (Our youngest son) we always wanted that so called , "normally." It's a rough time to go anywhere especially dragging a tss with you. We've dealt with all the therapies and doctors and church. So over it. Happiness and family harmony is the key for us.To each his own.

    ReplyDelete
  106. People write books about "why bad things happen to good people." I think some people are trying to be comforting by saying such things as "God doesn't give you more than you can handle" but unless you believe the same thing, it's NOT comforting at all. I think everyone has some degree of challenge within their lives, whether it be physical (cancer, asthma), mental (depression, etc)...and some might be more complex, challenging and obvious than others. A person can get fixated on "why did this happen?" It's not that the question is not important, but you can get stuck on trying to answer this question while life passes you by. I think society in some ways considers people with autism and other developmental disabilities to be less valuable or less important than neurotypical kids. A typical response to a parent of a child with ASD/DD might be one of pity. To families living with a child with ASD/DD, it's the hand we've been dealt and we try to make the best of it. Our lives are certainly more challenging than parents of a child with a disorder that is less impactful, but we have to live our lives. That's my two cents.

    ReplyDelete
  107. Keep rocking on this is your family doing your best love your blogs

    ReplyDelete
  108. Been a born-again, non-denominational Christian for 27 years now and the day I found out my gorgeous son had autism I went on a major rant at God and told Him exactly what I thought of Him. Something I still do now, from time to time, and I figure He's big enough to take it. If He is my Father then He can take a little thing like one of His kids ranting that it's not fair and He's not doing His job properly and why me etc, Haven't been struck down yet ;)

    Autism a gift from God? Not a chance. But neither do I see it as "punishment", "the work of the devil" or anything else you hear from religious crazies who care more about pulling people down than lifting them up. Because a real Christian doesn't behave that way. Only the local busybodies act like that.

    Good on you, AD - I admire and respect your views.Because when it comes down to it, however they appear on the spectrum, raising kids with ASD is hard work and there's no right or wrong way to do it. I know I "ought" to say that I spend every waking minute in meditation and prayer but quite frankly that's pie in the sky. I live on planet earth with real problems and real stuff to get on with...and if anyone truly believes that Christ dwells within those who love Him then they can get the hell off my back and let the two of us crack on with this thing called Autism.

    ReplyDelete
  109. HI AD, I am also a 44-year old Dad with an autistic child (snap). That is to say he has mild Asperger's, I wouldn't even compare my days to yours! I was also raised Catholic (snap). However in terms of faith struggles I ended up with the Baptists (that term means something very different in my country than it does in the US, just saying in case anyone is forming first impressions already). I completely agree with your post and several other comments on this post, including the fallacy that 'God doesn't give you more than you can handle'. I personally think your posts are incredibly gracious and I can only imagine what you really want to say to people who trot out such ignorant cliches. I find your blog refreshingly honest, and at the same time, non-judgmental, and you are a beacon of light to me in that your marriage is still together! My child's mother gave up and left a year before the A word was even mentioned in regards to my boy, and I was a single Dad for 5 years (the day of his diagnosis I was very, very alone).

    One thing that hasn't been mentioned is that many people including myself believe that God is the source of morality, in other words God sets the standard of what is good and what is evil. (In apologetics circles, this is usually raised in debates on Creation versus Evolution). So yes we can say Autism is bad, and not a gift from God, but I guess for myself I stop short of blaming God for the sole reason that without God, I wouldn't have any basis for calling anything good or evil. If that makes sense to anyone? Sorry that's a very quick description of the concept and not meant to be glib or insensitive.

    As my son has gotten older (he's 15 now), he has been acutely aware of his autism. He has faith in God, in fact you could say he has made God his 'obsession' and he always has his head buried in a Bible. Having said that, he prays almost every night for God to take his Autism away. Based on the comments above I gather he's not the only one! His autism has become less of a problem as he's gotten older, but I put that down to his personal maturity and what I view as his refusal to let it control him. I have so much admiration for what he copes with daily, including being a child of divorce and living between two houses with step-parents in both.

    Another thing to mention is that I have been in a lot of different places and seen people get prayer for healing, mainly from physical things. I have yet to see anyone healed from Autism. So for me the jury is still out on whether God caused it, or allowed it, or whatever term we use to describe how it happened. My opinion is still that it is just part of the world we live in, but my question is if it's not from God, I'm wondering why I haven't seen anyone healed from it. Maybe someone else knows of an example? That's my little nagging bit of doubt in my otherwise firm opinion that it "just happened."

    ReplyDelete
  110. God hates autistic people, to him were just freaks, he thinks we chose to be autistic, when he of all people should know that autism is not a choice, we are born with it, but he doesn't care, sitting atop his golden throne in the heavens why should he care, rather that giving any of us a chance it's so much easier to send us to Hell.

    ReplyDelete
    Replies
    1. Im autistic and god doesn't hate me! You hurt my feelings!

      Delete
  111. As a Christian I cannot begin to talk you how very much I love this post. Autism is in no way a gift!

    ReplyDelete
  112. If "God doesn't give more than you can handle" then why there are so many suicides : )

    ReplyDelete
  113. Wow im glad I came across your blog. I am one who has said many times "god doesn't give you more than you can handle" and "I dont know how you do it because I couldn't" (not with autism specifically but other things) I dont think I ever sat back and thought about how others perceive these comments so thank you. Although Im a Christian and have my beliefs I am not one to push my beliefs on others so next time I start to say these words I wil try to
    think.

    ReplyDelete
  114. So glad I was able to find your blog. And let me first start off by saying, by no means do I believe that God gives any child any type of disability. The gift is always the child. Not the disability. As a parent of an Ausburgers child, I often am reminded that the weak minded must constantly find other reasons for WHY their child was 'chosen' to have a disability. Many refuse to seek the the answers in the the correct place; their own DNA or how they treated their bodies, both before and during pregnancy. Though there is no real cut and dry answer, still for those that claim that God gave them a child with a disability is easier swallow than looking at themselves in the mirror. This often offends me not because they brought God into the equation, but for their blunt stupidity and ignorance. Knowledge on both God and the Disability is POWER. That age old adage still rings true today.

    On the other accounts of your blog post. Though I'm not exactly in the same hot seat as you, I do know what it means to burn out. I will tell you as my Mother once told me; When you burn yourself out, you will fail to handle the situation in a logical manner. You HAVE to take a break. You HAVE to have down time to be a Man, a Woman, to be a Husband, to be a wife, and to be PARTNERS. Without that, your system and life will break down, and in the end it will be the child that suffers even further. Kudos's to you for realizing that you and your wife need to do this. It's not selfish on any level to want that down time.

    ReplyDelete
  115. as a practicing Catholic, I loved this post. I don't feel that autism is a gift from God, but I do feel closer to God whenever I am in the midst of the challenged. I have an 11 year old grandson that I've been raising since birth, most of the time I spend in confession is spent talking about how difficult it is. I feel envious of my friends who can pack up and go at a moments notice. My priest told me I am doing God's work and it is normal to feel envy and anger. All in all I do feel there is something spiritual about my grandson. Almost as if he's an earth angel? I don't know. It just helps get me through the day. Thanks AD.

    ReplyDelete
  116. thank you for being so open and honest. i truly appreciate your post.

    ReplyDelete
  117. I have both lost a typical child, in an accident, and raised a child with Autism to adulthood (who was moderately to badly afflicted, but did eventually make a full-enough recovery to function normally. He is now in the military, married, and has a child). In addition, I am deeply religious. I guess religious isn't really the right word for it. I don't do prescribed prayer, and maybe it's hard to understand, but I believe in a living God, Jesus Christ, and have a relationship with Him.
    Autism isn't a gift. Like any other affliction, there is plenty to learn from it, but lots of life lessons are learned the hard way.
    The difference between losing a child in death and losing a child in Autism, is that with Autism, your child dies every day. Every day, you lose one more day of their future. One more day of potential relationship. One more day of growth, one more day you should be watching your child grow up, and it doesn't happen. One more day closer to the day you see him graduate. One more day you wait for the day they were supposed to come home to introduce you to "the one". One more day you were supposed to be closer to the day you'd get to walk them through their steps to parenthood, and see your grandchild for the first time. One more day you were supposed to help them through their own trials, and one more day they were supposed to be preparing to care for you in your old age.
    The cycle of life is broken in Autism, just like it is in death.
    Losing a child to death is horrible, and trust me, just like Autism, the agonies never end. And I'm not here to start a vaccination/anti-vaccination fight, but I do see people say things like "I'd rather my child had Autism than die of a vaccine-preventable disease", and I'm here to tell you they are one in the same thing.
    As part of believing in God, I guess "religion" has made the death of our son a little easier to take, since we DO believe we will see him again one day, in heaven. I don't know that it made Autism THAT much easier. Regarding Autism as a gift is kind of sick, in my opinion. Illness is not part of who we were created to be, it's part of the broken world we live in. We may have to live here, but we shouldn't celebrate the world's ills. We might use them to increase compassion, or patience, or perspective, or our reliance on God's strength, or our hunger for heaven. I'm more than ready to leave this broken world and live in a place where there is no more illness, no more sin, nor more dying and no more crying. Where the ills of Autism, or cancer, or just being a jerk are no more.
    Raising my son with Autism was just work. Constant, unending work. It took away from my other children, who deserved me no less. It stole relationship, moments, fun, time, cuddles, and my energy, because ALL of who I was, was wrapped up in this great work. My other children turned out great. The one left living doesn't anyway. I didn't get an opportunity to see the other one finish growing up, but I believe he would have done well eventually. But autism is like a black hole. It takes and takes and takes and it never gives.

    ReplyDelete
  118. I do hope that my book, Jamie is Autistic: Learning in a Special Way, will be of help.
    As a special education teacher, I have helped many children to achieve.
    Joan Ramirez
    auhor

    ReplyDelete
  119. For the love of God, stay away from Scientology. They believe that children with autism are "degraded beings."

    ReplyDelete
    Replies
    1. I dont think that's true!

      Delete
  120. I'm with you on so much of that! But as an ordained minister I don't throw out God with the autism. God did not GIVE my daughter autism or GIVE me a daughter with autism because I was some kind of special person. God did not PUNISH me with a child with autism and another child with a completely different disability. And for the record I hate the autism that imprisons my daughter, just as I hate the mitochondrial disease that imprisons my other daughter. And God does not make sure I never have more than I can handle. Because I can't always handle what is happening. That kind of belief might be necessary for some people, but it's not where I am. Biology, environment, choices, random chance, and genetics, all contributed to my children's disabilities, but not God, except in as much as God set the world into motion. What God does do for me is help me get through the day. When I think I just can't do it one more day (or one more minute), I ask God for just enough to get through the present crisis... my daily bread. Sometimes I succeed, sometimes I fail. God forgives me when I fail and celebrates with me when I succeed. Keep up the great work Autism Daddy.

    ReplyDelete
  121. The phrase "God won't give you more than you can handle" is totally unbiblical, the text they are thinking of is in reference to temptation, in that God won't give you more temptation than you can handle (1st Cor. 10:13). I have a 4 year old son diagnosed just few months back and it totally rocked by world. As a student minister I had a lot of questions for God! Did God give my son autism, no. Did God give me that cold last week, no. But I do understand that God is in control, and what was intended for evil against me will be used for good.

    ReplyDelete
  122. I just love this site just want to say thank you

    ReplyDelete
  123. What an awesome blog!

    ReplyDelete
  124. It has all pretty much been said, except..
    What I would offer is that as a result of poor religious education, and the lack of self-motivation to really know the actual teachings, so many people leave religion that they never knew in the first place.
    I have had to learn to be forgiving ( "as I would be forgiven") when people, in an effort to be kind and complimentary, say things that they should not. They are trying.
    I would not have survived this far without my personal relationship with God, and without knowing for sure that he is a kind father, not a trickster that hands out pain and suffering to see what happens. We live in nature, shit happens.
    My child has brought so much joy , humor, humility, and lessons in to my life that I choose to focus on that,not the pain and suffering, and understand that in the end, love is why we are all here.

    ReplyDelete
  125. I definitely applaud you. My son is on the spectrum (according to the DSM 5, it's all under the same umbrella now which I think is kind of dumb, but whatever, right?) but he has Aspergers. That just means with the meltdowns, behavior issues, and all that----he is verbal, too. So, when he's in the midst of a meltdown, we hear all the things he is thinking with NO filter. I don't meant to sound as if I impugn your struggle. It's all a struggle, regardless. I would like to think you agree? It's hard raising any kid these days, but kids on the spectrum---the feelings of utter failure either because you feel your genes contributed, a vaccine you should have refused, wondering if something you did in his infancy caused it, and all the other horrible thoughts parents have when their child has a disability flow through your head constantly. I know the struggle! I don't think God 'gives' these kids these things, but then again, it can be used as a positive thing, I suppose. It's hard to find where your heart fits in with what your mind will accept as truth. I'm not trying to preach here. I have my faith and it is where I find solace for my own problems and coping, but I'm not egotistical in the manner of which I feel God CHOSE me to raise a kid on the spectrum. I think it's just the luck of the draw, but I love my kid regardless. The reasons why kids have disabilities in the first place seem a little cruel, but it doesn't change how much I love my son and what lengths I will go to provide what he NEEDS and keeping him comfortable, either. As I'm sure you're aware, parenting is the same basic principle---love your kid(s), raise the kids as best as you can with what you have, and take pleasure in the simple things. Turn off the static of the world and just enjoy your family. That's all parenting is. You've definitely got your handle on things.

    ReplyDelete
  126. Dear Autism Daddy and to all of us parenting a child with autism: I just want to encourage you that all of this is temporary. Our lifespan is a short 100 years or less and we have AN ETERNITY to live in heaven! Could anything be more URGENT and important than making sure we will live in heaven instead of hell? (I've certainly experienced enough hell with autism and could use some heaven.) To get right with God today, ask Jesus to come into your heart and follow Him, repenting of your sins. John 3:16 says, " For God so loved the world that he gave his one and only Son, and whosoever believes in Him will not perish, but have eternal life." One side benefit to focusing on the big picture of eternity and salvation is that my daily challenges with autism (like my son throwing my flat screen TV out of the 2nd floor window) turn into incidents to deal with and put behind me, rather then sending me into a depression. I have found that reading the uplifting words in the bible are MUCH more rejuvenating than watching any programming on TV, and hope you will too once you give it a try. (I like to read Proverbs when I only have a minute. Picking a gospel like John in the New Testament is a good place to start.) Truly, my favorite part of the week in going to church, hearing the sermons, and socializing there. Lastly, don't be deceived, Satan is clever. (Google Scientology and cult.) I don't believe God gave me this "gift" of autism, but rather it is a consequence people's sinful choices in this fallen world, like the sinful choice (IMHO) to preserve vaccines with mercury thimerosal, produce baby formula with GMO soy that destroys infants' digestive systems, etc. I'm hoping to meet you and your autistic kids (who won't be autistic anymore) in heaven, and that our bitterness from this difficult life will not keep us from pursuing God & our Savior Jesus Christ. Blessings, Cindy

    ReplyDelete
  127. I'm with you. If God gives us what we can handle, I've got a few choice words I would like to share with him. I made it out of an abusive family, but my marriage took a similar turn and then the guy decided to be a deadbeat. I got away from that.. The next guy is where my Autistic son comes from. That dirtbag cheated on me and hasn't had anything to do with my son since about the age of 2, and this was before any symptoms came about so it had nothing to do with the Autism. Fast forward. Family is not supportive, never was, still isn't, I'm in this alone. COMPLETELY friggin' alone. Had a great relationship with a childhood sweetheart. He loved the kids, the kids all loved him. I was beyond happy when we found each other and it was amazing how the pieces seemed to fit and it was great. It lasted 5 years. Little did I know how evil his own mother was, and she was handing him her pain pills and encouraging him to eventually destroy the relationship (thought I'd marry him..) per his addition. Here I am again. Completely alone. 35. No way to meet people, no way to date.. No way to work steadily because any time the kids are out for workday or break, guess what, I'm at home missing my income. We have now lost our house due to this and oh yeah that crappy family, yeah we get to stay with them for the time being. So they can talk down to me constantly, as if I am 12. So they can get mad because they cannot control my son, and they want to nit pick and pester everyone constantly, and make rude comments, even to my autistic son. Every day almost is some kind of FIGHT. We were almost put out just two weeks into this. Yeah, God gave me what I could handle? If that's the case, I think I'll punch him in the face. I went from being approved to purchase a house, to now practically being homeless and just as unwanted by my family as I was my whole life. YEP THANKS BUT NO THANKS. pfft.

    ReplyDelete
  128. totally with you, except I am the grandma, helping my daughter with her family of 3 boys. 7,5,and 3. her middle son is severe non verbal with seizures. he spits everywhere. whoa partner, no one mentioned spitting when they discussed stimming. maybe I should tell those good wishes people that the spit on their floor, carpet, couch is a gift from God ? :( I don't think they'd believe me either.

    ReplyDelete
  129. My wife showed me a cartoon the other day - A man and Jesus were sitting on a park bench and the man asks Jesus "How could you have let the world get into this terrible state?" Then Jesus says "That's funny! I was just going to ask you the same question". We don't have to be given trials by God, there's enough corruption around to ensure many of us get a good dose of trials.

    Enjoyed the article thoroughly! Can really empathize as we go through many of the same things.

    ReplyDelete
  130. Thanks for sharing.

    We were quite devout Christians when we married. Then we have an autistic daughter. We struggled so much during the earlier years ( she is now a teenager but still as autistic as they come ) you wouldn't believe it - or rather I think you have a pretty good idea what I am talking about ...

    Anyway, what I want to say is after all the praying in church, in cell groups, with various pastors, in evangelistic meetings etc etc, nothing much has changed. And the worse thing was after everyone had had a fulfilling prayer / bible study session with us, they all go home to their typical pleasant life, and we still get stuck in our shitty private hell.

    I guess what made us very useful is that they get to fully APPRECIATE how BLESSED they really are. And they are more thankful to their CREATOR for making them 'normal'. ( In fact, that is exactly what a Sunday School Head told me - she said that my daughter served a very important role in showing the young kids in Sunday School how fortunate they are to be born normal. )

    For all this and more, I have to finally conclude that there is really NO GOD unless you want me to believe that a loving God would actually have the heart to make a totally innocent kid suffer from the time she is born till now.

    ReplyDelete
  131. I'm Catholic and believe in God. I also believe that having an autistic child is totally shit, and there are times when I really don't deal with it at all. I believe people come out with this to pacify themselves about my situation. If they had the experiences I have had the would probably not come out with this patronising crap. How feeling like this fits in with a belief in god I don't know but that's the situation right or wrong. But coming up with a simplified homily to justify my massively complicated life does not help anyone, least of all my child.

    ReplyDelete
  132. I'm an atheist and when people say something like that to me, it's double hard. You can't, as an atheist in a small, midwestern town, just blab out about how you don't even believe in God, much less accept his assessment of your burden level capacity. It's more of a quick nod and a quicker change of subject.

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...

© 2011-2016 Autism Daddy / Frank Campagna. All Rights Reserved