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Tuesday, May 13, 2014

I want a do over.

I've been sitting on this post for over a year now, too afraid to click publish.  Then I thought, "Oh what the Hell?"  I took the time to write it and I hate it collecting cyber dust bunnies. So here goes nothing.

I want a do over.  I don't want another kid.  I just want to get a time machine and have an honest to goodness do over with the one I got.  This is one of those hard truths of autism parenting that I wrestle with a lot silently because 1)Never gonna happen so why dwell on it? 2) It kind of insults the progress he has made and what he is all about.

I want to go back to the babyhood time.  I want to be blissfully unaware of the road ahead of us.  I want to just go around thinking that eventually the sleep deprivation will end.  I want to believe that he'll potty train soon and I'll be done changing wet sheets in the morning before I have even had my morning coffee. (Followed by mid morning coffee, lunch time coffee and coffee all the other parts of the day to keep my eye lids up and open.)

I want my kid to be on the same level playing field as other little kids his age.  Sometimes I forget that kids his age do all sorts of stuff that he can't or simply won't do.  I mean that's good and bad.  Good, when he still calls me "Mommy" and wants to hold my hand in public.  Bad, when I see a bunch of kids all doing some sort of game that kids his age do and he's still pretty content with the same Thomas the Tank Engine trains they probably abandoned years ago. I want to not sit there thinking "Oh those kids must be really advanced." because I have no earthly clue what a kid his age is suppose to be doing at this age. 

I don't want to have to know about the alphabet soup list of letter combos for all of this. ASD,ADD,SPD,IEP etc.  I just want to buy him Alphabits cereal and have him actually repeat the sounds I would say to him when he would sit in the high chair as a tot.  Not just stare at me and chuck them at the dog.  (OK, he probably still would of thrown them at the dog.  Damn, that dog kept the floor around that high chair clean.)  I don't want him to start saying some words and lose them like he did.

I don't want the functioning labels because really, they make absolutely no sense.  Not in our case anyway.  They are way to subjective.  Yeah, my kiddo can hear the musical notes played on a guitar and walk over to the piano and play the same ones there but he can't tie his shoes.  So where do I put him?   People tend to freak the Hell out over the idea of labels but at the same time we do need some descriptive words here.  I don't have an idea of what to do instead.  I guess they are here to stay.  Maybe someone will come along and design a new look for the label. ("Same Great Autism taste.  Now with less stimming!)

I would love to not look like a helicopter parent.  I want to not go on a recon of places before we have been to them to map out possible safety issues.  I'd like to just show up.  How novel.  Did you know some parents actually get to just drop their kids off to birthday parties and sports practices and THEN go back later for them?  I KNOW!  Wild right? I would love to just chill at a beach but my kiddo is making a bee line for the ocean. Never gonna happen.  Some folks actually bring books with them to read.  Fascinating.

I can want my do over.  I can have these feelings and be sorry for having them at the same time.  They can just coexist in my mind.  Sorry but they do.  I can want me to go back and have those moments of pure ignorant bliss combined with the knowledge it is coming.  That maybe I will catch it sooner.  Then maybe I can make my peace with it a little faster.  I wouldn't mind a day filled with some easier judgement to handle.  Like who cares that I didn't feed him homemade organic baby food.  He's ate. He's fine. New Mommy smugness seems like a walk in the effing park compared to what is being thrown at me now.  At the end of the day, the other babies didn't care what I did even when the parents did.  Right now, someone with autism could be reading this and be hurt or even angered at my words.  I'm sorry if I caused you pain with these words but my feelings are valid.  I am allowed to feel my pain just as much as you.

I can't help myself for wanting a do over.  Maybe I'd just savor those first few moments a little more.    Maybe I would be a little more of a relaxed parent instead of obsessing on brands of diapers and other dumb stuff.  Maybe I'd hug him a little tighter.  Maybe I'd sing him one more verse of "Ba Ba Black Sheep" while he slept in my arms.

Maybe I'd buy stock in Ore Ida fries had I known how important they would become to us. :-)


18 comments:

  1. Amen, and right there with you. Thank you for opening your heart and saying what some of us are afraid to say.

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  2. This is fantastic. I am so with you!!!!

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  3. I've too thought the same thing. I've said it out loud. How I wish I just had some "normalcy". But then I think, if things were "normal" how would I know what a truly wonderful kid I have? Don't beat yourself up over the dreams of a normal life. It just means you're human.
    Don't you have some fries to buy? ;-) Much love!

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  4. Beautiful. I feel this way more than I'd like to admit. Thank you for being raw and honest. You are not alone

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  5. Thank you for sharing. I have a totally different child in a totally different scenario, but I totally get it. I've mentally been there too.

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  6. Thank you Mama! I feel the same way. I have 2 boys. One with ADHD & ODD, the other with mild ASD and a little ADHD. It's usually the older one with the ODD that I'm thinking these thoughts about, because my ASD guy is a relief compared. :( NT parents don't understand how we feel. Nobody does, unless they've lived it.

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  7. Again I thank you for saying what I'm thinking, and I believe we are allowed these thoughts.

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  8. I find it interesting that today of all days you post about wanting a do over!! I've been thinking not necessarily of a do over so much as a chance to have a least some understanding of how things would be and how better to be able to help my kiddo!!! She's almost 17 and is supposed to "graduate" next year but as I was doing an ECC today for her, on some things she's about an 8 year old level others she hasn't made it out of the 4-7 year old range...I would've loved a heads up and KNOWLEDGE!!!! One day at a time! Hugs, Sarah from NM

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  9. Since I had twins I can't say I want to go back to baby age. That was a nightmare in ways all of its own. My son gave us heck then too with severe reflux. Now looking back I realize he also probably was screaming at us a lot over sensory stuff too. The signs were there. I just want the good moments. I want to string all the good moments I have with him together and forget the bad ones. Can I do that? I also want to take back all the moments when I lost control and patience and was harsher than I needed to be. Let's take those back too.

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  10. One of the best posts I've ever read. I feel ya on the "drop kids off" and "read a book at the beach" especially - Fascinating! :) It's just good to know none of us are alone.

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  11. I have said these things to myself a hundred times and it's not a bad thing, it's true. What parent would wish this? Loving them, appreciating their strengths, their little personality, it's all a given. But who wouldn't want their child to be what that world considers "normal"?! Being an ASD parent and/or person in society is like swimming up - stream in tennis shoes. ....This shite is hard.

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  12. I don't think this is an invalid thought at all. I know there is a lot of hostility among autists/aspies concerning a certain group that claims it speaks for us, specifically because the focus is on how bad the symptoms are, how hard they are on our loved ones, how this is all despair and doom and gloom and even going as far as justifying abuse and homicide when the going gets really tough. They speak for the disappointed parents out there who have not chosen to deal appropriately with their reality, but rather wallow in the loss of their dream.
    But you aren't wallowing when you acknowledge your mixed bag of feelings. I wish I were NT sometimes and the struggle of interaction, all those constant misunderstandings, just didn't exist. I lost my career over it, my children lost their access to free extra-curricular activities when I lost my career.
    I watch my son and wish he wouldn't face the inevitable crushing disappointments that await him. He is an aspie with a social personality! Somehow I have to train him to stay afloat better than I have, and yet I think his condition is more profoundly autistic than mine. Maybe it is the age gap? I hope?
    My focus is on moving forward and working with what we've got. I was raised a homeschooler, so I have no issue with unorthodox approaches, and I got over the age-equivalent comparisons and grade level bull a long time ago. Children are unique individuals, special needs or not. My NT kids don't follow an average trajectory either, because there is no average child.
    But at some point, they have to fly from the nest. Will they be ready is a nagging question in every parents' head, a migraine in ours. What will we do when society requires him to be on his own, and he is still too absent-minded to not set his house on fire? My husband can support me financially after my huge crash and burn - it took 18 years for that to happen, even, but I never earned enough for the job to be called a living, so he's always been the bread-winner. I'm a homeschooling mom, and that affords me an excuse for not making serious dough at the age of 34. What excuse will my son have? What kind of spouse will be happy to bear that burden for him? I'd rather raise him to be better at this life stuff than I am. I'd rather have the comfortable security of an NT kid... sometimes.

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  13. WOW!! I truly am not alone! Thank You for this, seems to have caught me just when my troubled heart needed it most!

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  14. I'd buy stock in cheese, fries, and pudding. I'd push harder. I'd have started a massive notebook sooner. I'd love to go back just four months before the epilepsy hit.

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  15. You have no idea how many times I have wished for this. I want to go back to a time before that fateful day when on the playground I heard the other kids whispering about "that weird kid" and realized they were talking about my beautiful, precocious, life-loving boy. How couldn't I have seen it? How could they? They were only children, and I was the one with the degree heavily weighted by courses in psychology and human development. How dare they they change my perception of him? They stole my perfect, innocent baby. I will eternally mourn from that day on.

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