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Friday, May 31, 2013

Living on a prayer with Autism

Why yes I am using another 80's hair band song for a post title!   Frankly being from New Jersey I'm surprised a Bon Jovi reference hasn't happened sooner.  Admit it, you love me and my so cheesy you can put it on a cracker and call it a snack taste in music.

Anyway, consider this post my token religion post.  As little as I claim to know about autism, I know even less with religion. So I'm going to just rattle off what happened and you do with it what you will.

 I get a lot of emails as "Mama Fry".  Many asking for help or advice but quite a few are nice "gee ain't ya a swell gal, wish I could share a box of wine with you" types.  I love those and not just cause wine is involved. Honest!  It makes me feel good to know that I'm not alone on this journey.  There are folks out there just like me.  Inappropriate, sarcastic and tired.  We may be sleep deprived but dammit we are a good time when we get a break.   Be it a night out with the girls or hiding in your bathroom for five minutes claiming stomach distress while your family is whining they don't like what you made for dinner.

Some folks even write me that they are praying for me and my kiddo.  That's pretty nice of them.  They don't know me or us really other than what I tell you.   Granny Fry didn't raise no fool.  Heck it was Great Granny's and her's constant novenas to St. Jude, the patron saint of Impossible Causes, that helped me pass my math classes in school.  So when someone says they are, I say thank you.  But an email really got my Irish up today.  To make a long story short, yadda yadda yadda, blah, blah, blah

"Praying away the autism illness"

 What the what?!?!?!?!?!?  Did she just? Oh no she didn't!!!! Aw Hell No! Autism isn't a cold!  She better go thank the good Lord I wasn't in the room with her when I read this!  Nobody is going to believe this one.  Quick, let me copy and paste this and put it on my facebook profile page so other folks can see this.  (which is what I did.  Yeah I'm a piece of work like that but really that doesn't surprise you does it?) 

I'm pretty sure no matter how hard I pray or whatever god or goddess I pray to, autism isn't going away. If you really want to pray for me or any parent who has a child with autism, here's a list of good things to pray for us.

Pray for us that we get four to five consecutive hours of sleep a night. So we may be rested enough to do our jobs as parents.  To get the kiddos out the door to school and ourselves off to work, be it inside or outside the home.

Pray for us that we may have patience.  Gobs and gobs of patience.  For we get gobs and gobs of unsolicited advice and judgement pretty much every day.   Coupled with the fact that we do need to use what little patience we have to raise our kids who come with extremely unique challenges.  Sometimes we get emails from well meaning people that makes our blood pressure skyrocket. (see the above bold print statement)

Pray for us that we don't have snap.  That we have compassion for our kids, who sometimes cannot fully explain to us in terms we can understand what it is that they are going through. 

Pray for us that our school districts can provide the appropriate services our kids need.

Pray for us that are married that the stress of it all doesn't take a toll on the relationship because damn it sure does.  Can I get an Amen on that?

Pray for us that despite one bad day that we will go to bed (eventually) and wake up knowing tomorrow is a new day and it can be better than the last.

Pray for us that we have the endurance to get our kiddos to the therapies, doctor appointments and all the services they need.  Especially that we get them to the right place on the right day.

Pray for us that we can still keep our humor despite what life throws at us. 

Pray for us that no matter how frustrated we might get with autism, we remember autism is a part of child we love very much.  It's not ALL of them, just a part of them.  Unconditional love means you love all the parts, even the autism.

So you see, I'm not so interested in praying away a part of my kiddo.  Would I like life to be easier for him?  Hell yeah but praying away a part of him, no thanks.  That's like trying to pray away freckles or eye color.  Can't happen.  Won't happen.  Let's focus those prayers on something else.

Like praying Mama Fry wins the lottery. :-)


40 comments:

  1. Praying I get to finally meet up with you one day! :-D

    And AMEN to the rest of it! ;-)

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  2. Must say when someone said this to me the other day in a shopping centre I went off...the entire centre heard me yell at this ignorant idiot that autism isnt an illness....with a few extra choice words included... normally I have more patience with the ignorant. .. this day I snapped. And as a human I am entitled to these days too.

    Mind you the 4-5 hours unbroken sleep sounds like heaven. ... what is it?

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  3. AMEN!! You said it sister. I needed this this morning. I love your blog.

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  4. Replies
    1. It's cause I quoted Bon Jovi right? ;-) thank you Lexi.

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  5. I go to church every Sunday HA actually TWICE on Sunday and I pray for alot of things BUT never ever ever do I pray for my son not to have Autism. See I cant and wouldnt ever pray for that to go away it would be like asking for my son not be here.......Autism is apart of him and our family, its made us stronger!! Im one PROUD mama of my son who was diagnosed with ASD a yr ago he AMAZES me every single day and is a wonderful bright caring child. I pray for patient, guidance, strength, understanding from others, his teachers and therapist to guide him through his day, for sleep (lol) God makes us all different for a reason and you dont ask God to un-do his wonderful work. I LOVE your post!! You keep me going somedays with your sense of humor and your take on things! So ill keep praying for all of us to keep it together and you keep posting and making us all laugh!!!

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  6. Pray that we have enough vodka for our martinis!

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  7. Larwwwd! I love it! This TN transplant from GA who was raise on the bible belt thinks you hit the nail on the head. We have two with autism and one with Celiac disease. We do the best we can and I think not having the right resources my boys are turning out great. Change my boys never! Pray them normal oh child please. That is like the book my son saw yesterday..
    Autism for Dummies. I just shook my head. My 12 yr old said " Mom it says Autism. That's me but you do not need it because you already know me". Yeah buddy I do. I have learned that ignorance is really bliss.

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    1. "...but you do not need it because you already know me." That statement blessed me. We moms (and dads) definitely know our kiddos, inside and out. I thank God every day for all three of my ASD menfolk -- one son with autism, one with ADD and my husband with Aspergers. It's quite the adventure, and God uses it daily to shape the rough edges in me! ~Elly

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    2. TN transplant from GA, I'm a GA transplant from AL--via DC, Paris & NY just to spice things up! I wanted to second your "love it" and also let you know that the author of "Autism for Dummies" is Stephen Shore, one of the most brilliant, talented, witty individuals with ASD. When I first saw the book, I was ready to dismiss it. And then I heard him speak at an event last month. So while your 12yo is probably right that you "do not need it," I'm guessing it might be helpful to those new to the diagnosis. Dr. Shore's personal story is amazing and demonstrates the difference that committed, nurturing parents can make in a child's life--his parents were told to institutionalize him as a child that they refused. Here's a link to his website: www.autismasperger.net

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  8. I have vodka and acceptance. Glory in my name.

    I think that the most jarring comparisons between how autism is viewed come from comparing it to other groups who suffer discrimination. Compare autism to race...race is a part of who you are, but can you imagine someone saying, "I know it must be hard sometimes being black...pray to god that they take the blackness away." And maybe if you were black you might go...yeah, in a racist white dominated world it IS hard being black...but now I will burn you in fire for spouting that racist bullshit to me.

    I don't know.

    I need to ask Karen what she thinks. I wish you could tag people in comments.

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    1. First of all Jim let me say, how dare you call out my blackness all up on the internet like this. Am I your only ethnic friend?

      I've been trying so desperately to hide the fact that I'm black so that I can gain more acceptance in this white dominated world. I mean I took down my dreds, died my hair blonde and had an appointment with Michael Jackson's dermatologist just last week.

      And btw...
      Black people don't burn white people in a fire for "spouting racist bullshit." History shows us that white people do most of the burning and hanging. We simply bust a cap in yo ass.

      In all seriousness...If one were to pray for anything, it would be for the poor racist souls who have not discovered equality, and acceptance of those who are not exactly like them, whether they be black, autistic, purple or blind.





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    2. Karen is black?!? And you aren't?!?

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    3. I am not. It's weird since we're brother/sister.

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    4. Jim and Karen make me happy :)

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  9. AMEN! I wrote something similar a few months ago, just not as awesome :)

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  10. i'm just gonna tell ya...

    every time you wrote what you were 'praying' for (i.e. 'Pray for us that our school districts can provide the appropriate services our kids need.') secretly i heard jon bon jovi singing it.

    yep. jon bon jovi just sang to me during my morning coffee, 'cause i'm really a jersey girl at heart, spraying down (or up) my hair and putting on my skinny jeans.

    love.

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    1. I hope your jeans are acid washed too. :-)

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  11. WOW!!!!! Let just say great post! Love what you pray for. Can you also pray we sometime get to hang, watch our kiddos play and down some wine ;) Seriously though, love this!

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  12. This just made my day!

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  14. Oh boy how many times I have heard this in different forms too and all I want to do is squeeze their little heads in between my hands and just pop them like a zit! really! ugh! LOL Oh, and the Bon Jovi reference just won you a sacred place in my crazy world. I love Bon Jovi. No not a Jersey girl. Just LOVE him. That's all.

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  15. I've not had anyone pray for a autism-cure miracle for me. Guess I'm just not as well-loved. I have, however, been informed that neither kid has "autism" because it isn't real. It's just bad parenting. Thankfully, I'm no pushover, and I put that opinion in it's place. I suspect the idea is still held in their head, but they avoid my wrath.

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  16. I've been told 1) That my daughter is not autistic, but, in fact possessed by a daemon and if I accept Jesus as my savior, he will heal her. 2) The reason that my daughter has autism is that my husband and I don't believe in God strongly enough.
    And people wonder why I steer clear of religion!

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  17. I love, love, love this!! Amen. Hallejujiah. Thanks be to God. Yadda. Yadda. Yadda.

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  18. If someone prayed my autism away, would I still be me? If I suddenly wasn't so socially awkward, would I become someone else? If I wasn't so detail-oriented (to the point of ridiculousness) would I still be good at my job as a writer and editor?

    Gosh, that sounds like more of a curse.

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  19. Not enough Amen's on the planet for this. Well said, Momma Fry!

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  20. Momma Fry your the best... your sense of humor is wonderful. I can always count on a laugh or wise remark from you or someone else to make me put me in a better mood. I pray that i can just deal with the trials and tribulations of 2 teenage boys with varying diagnosis on the spectrum. :)

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  21. After the longest day I've had in a long time, and feeling like we're going so far backward with Abbi... and after much well meaning advice from family and friends... and after finding myself still sitting here listening to my child scream bloody murder.... I want to say thank you. You always help me to remember that I'm not doing this alone. Others are on this same path with me, fighting their own battles, and surviving. Sending good vibes to you and yours (I don't really pray much anymore).

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    1. I can absolutely relate to your reply... I feel the same way with one of my children, and well, you said it perfectly. It's always a little comforting to know we really aren't alone. <3

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  22. Being Hispanic I have to admit I have heard this more times than what I can remember & this being from a family that "isn't that" religious. The exorcism part gets me every single time, instead of making me mad it makes me sad to see that people can be so ignorant. It also makes me feel worried about the kids that have special needs but their parents might just be "praying" away the problem. Prayer is great and can be comforting when used appropriately like when praying we win the lottery which we kind of already did ;-)

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  23. Seriously- this is crazy! I am an *clears throat* agnostic- and shy away from those who always are in their pulpit. If you have ever seen any of my "Goddess Bless" remarks- you might have an idea of where my faith lies! I The thought of parents that actually do believe that the "power of prayer", no matter what deity you pray to will be the thing that helps an ailing child just blows me away.

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  24. Omg I started reading this and within a few lines I was telling myself this girl is not American. You have to be from Ireland right? Cursing? Sarcasm! It's so how we roll. You have a new fan. Can't stop reading now and I have do much to do today ugh .

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  25. You are a very humorous lady! Thanks for saying what so many are afraid to. Much love to you
    -Nicole

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  26. You are an amazing lady. When I start to get frustrated because Im tired, exhausted, and no one seems to understand, I read your page. It brings a smile to my face, because here you are a mama who gets it. And with getting it you stay humorous, and humble. Thank you for bringing a smile to my face when Im having a pity party.

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  27. Aaand... pray for our kids to always feel loved and never ever feel like a burden.

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