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Thursday, April 4, 2013

I would love your problems as my own.

Social Media, you are a cruel mistress.   You connect me to tons of friends and family I don't see very often and keep me up to date on their doings.  "Checking in" at various events and activities.  I see their photos of their kids.   I keep tabs on all their issues.   I've made good friends with several moms I've met online that I literally chat with every single day at some point.   You know who you are.  We get each other.

But you can probably tell that at some point every day it is a reality check for me for how completely different our life is compared to the average Joe.  It's really hard sometimes to see the bragging photos and updates on all the awesome stuff their kids do that I know will never be my kid.   Of course, I love these people and I am happy they are happy but god damn it is freaking hard bad to feel what they complain about too.   Yes their issues are valid to them but dude can I have their problems for a day?  Or an hour?

Sport teams and all the doings that go with, yeah I can see how keeping that organized can be a right old bitch.  Especially when I see friends update how they are usually freezing their arses off on some sideline while their kid is at practice or a game.   Why are all these events in bad weather?  You parents of the neurotypicals really need to figure out getting them into climate controlled situations.  I'm sure the expense of all the junk they need to play is a pain too.   I mean at least my kid occasionally gets insurance to pay for some of his stuff.   I still look at your updates of complaining about getting new cleats as a first world problem.   Sorry folks.  Price AFO's (ankle foot orthotics).  Cleats are a piece of cake.  You kid no longer is interested in playing?  Yeah I can imagine eating that expense would piss me off too.  However my kid not going to OT isn't an option.

The folks that post all those fantastic pictures of their kids.   I love them and I loathe them because it probably didn't take 138 shots to get one of them looking at the camera and smiling.  Thank god for digital camera and smart phones.   I feel like an annoying paparazzi but I'm just trying to get one good shot.  Just one.   Do you know the panic/dread I have with buying school pictures?   Or making that Christmas card?  It sucks.  I can't relate to a parent complaining that they have "to many" to pick from.  I just can't.  Please let me have that problem.  I'd love it and embrace it and possibly french kiss it to boot.

The updates on the grades and the school projects and the standardized testing.   Man I almost can't even read it some days.  I'm so sorry that your kid didn't get that extra credit question on the test but I'd love just once to have my kid take a test.   Finish a standardized test even.  Yeah my kid can tell you who the 20th president of the United States was (James Garfield, you don't have to feel bad for not knowing. I had to check with him too) but he still can't write his name.  So yeah, I'm sorry you're in homework HELL with spelling tests to study for or math worksheets to check, I just wish I had that problem to complain in solidarity with you.

I know I know.  The grass is always greener but it's just so damn hard to remember that.  I'm sure if the kiddo was "typical" I'd be bitching about something.  Like the kiddo just got invited to a birthday party for a kid we know.  She's neurotypical and frankly as happy as I am he is included, my stomach just goes in knots at the idea of going.  Cause I can't just be like "go play honey" while sit back with the other parents.   I get to hover and direct and keep engaging him with the other kids.   This next one is at a park we haven't been too.  I bet no other parent is going to do a walk thru/ recon like I will this week with him.   Just getting him used to the setting.   They won't have a thousand conversations explaining things like "presents first, than cake".   I see some parents actually drop their kids off at parties and then come back later for them.   That's never gonna be us.   The very concept blows my mind.   I envy that but at the same time I think "well then you're missing a party" and really as stressful as they are, hey, it's still a party.

I hate that I feel like this.  I will allow myself the pity party for one though.   I'm not a robot.  I'm not an autism guru.  There will be days that are great and others that are sucktastic.  It's the path I'm on and I have no map.  Oh Jeez, were you following me?  I haven't a clue where I'm headed.  I'm all for a road trip so feel free to tag along.   I'll even share a side of fries with ya. :-) 


79 comments:

  1. I totally get it. My daughter just got invited to her first birthday party and lucky for us we have something already scheduled. Hugs!!

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    1. Same thing happened here this week - bday party for twins, but we have a soccer game (special needs soccer league) scheduled.

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  2. You're not alone, I have learnt to sympathise with family and friends who have NT issues, but I'm lucky that they in turne understand our mediocre (to them) highs are our equivalent to straight A's lol xxx

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  3. I get it also! I dread those birthday party invites and worse yet, I hate when James invites several of the kids from his class (typical 3rd grade) and they all come up with this and that excuse not to come. This year we did an awesome archery party and the only friend who came was his friend he knew from his "Autism" school. The kids had a great time but me... I was sad.

    I also find that even in our own Autism community there is the "wish I had that problem" feel. Good post and thank you. PEACE

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    1. I've had some issues with not many children coming to my Autistic son's parties, but to be honest I've watched the same thing happen to my NT step-daughter (and no one at her school knew about my son being Autistic) at a party her mother threw her. So I think that part is a crap shoot no matter what, but we feel it more because we're already hyper aware of how much they want to socialize while paradoxly having trouble with that exact task.

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  4. Oh yeah. I have to say I had to stop myself from laughing out loud (at the office, supposedly working) at "Why are all these events in bad weather? You parents of the neurotypicals really need to figure out getting them into climate controlled situations." I'd like my kid to eventually play baseball (he's got a mean throwing arm, after all, it'd be a useful way to work out that love of throwing everything in his path, plus kids in baseball uniforms are so dang cute) - but yeah, the cold thing - I'm not really big into that. And I don't want to do the whole be in charge of the snack stand. And have practice every freaking night & early weekend mornings. I've got enough on my hands, thank you very much.
    I am happy that my friends have easy, happy, snappy kids - I don't want to wish any kind of big-time challenge on any kid, or their parents. But yeah, when i see friends posting about how insanely happy they are with their insanely perfect baby, I always think about how hard babyhood was in my house. When I see the funny, witty things that come out of someone's 3-year-old's mouth, I'm almost shocked that a child that age can say those words at all, let alone with attitude.
    Oh & the the vacation updates kill me most, I think - we can't do almost anything that people do on vacations. Summer vacations are coming up - there's going to be scads of people going to the shore for a week in some fantastic beach house, or off to Disney World, or to some island paradise. We don't even take vacations, not even 3-day weekends - we can't afford the time away from work and definitely not the money that's needed, let alone how much it would challenge the heck out of us with the enormous changes in routine & skipped therapy appointments.
    I love my child & I wouldn't trade him - but yeah, FB can be a blessing & a curse.

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  5. Can I come to your pity party? Been a rough year so far...we will hang in there as always. We just have to remember that our amazing moments will be different, our issues will be different, and that those chatty statuses and photos are not put there solely to torment us (I think).

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  6. So true! I totally agree with ya', especially the picture moments. Thank goodness for cameras with fast shutter speed.

    Attitude is everything and we have to keep pushing the boundaries. Our dedication to "our" children is indescribable.

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  7. Completely understand! I have two kids, and my oldest is on the spectrum. My youngest is turning one next month, and I'm still trying to figure out how I'm supposed to work his party with his big brother! I'm picturing big brother opening all the presents as they come in, freaking out about the amount of people, and then chasing him around to get him to leave the cake alone long enough for his brother to at least see his presents!

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  8. I so get this. I would dearly love to have those NT-family "problems" rather than poop holding, SIBs, aggression, et al. Oh, what I would give to have a future set of issues all revolve around our overactive sports schedule. :(

    -Kelly

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  9. thank you thank you! it's so strange being envious of small things like going to the park or a birthday party. Its okay to have a pity party every once and a while as long as we can get ourselves back up and carry on.

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  10. Thank you for sharing, touches on so much that is so true to me and my life!

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  11. Hugs, mama. Got extra ketchup for those fries? :)

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  12. I had to take one of my friends off the "show in newsfeed" list:( She has a great life, but it's just too hard to see everyday, how she's going on her second family cruise this year, and her husband took her to dinner and a show, and she's getting a mani-pedi at the spa with her daughter...I really am happy for her, but when she complained about the limo company cancelling and what is she going to do now...I was thinking "I just want 5 minutes to pee by myself and to sleep more than 3 hours!" I don't want to be bitter or jealous, so it's just easier to not read about it.

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    1. Well said! Do not be ashamed to "de-newsfeed" these people!

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    2. I have been there too. ((HUGS)) Mama, we can do this!

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    3. The "Show in newsfeed" FB option is the best...use it myself. I agree, don't be ashamed. We have to do what works best for our kids all the time. Nothing wrong with doing what works best for us every now and then. Imo, that is healthier than trying to force ourselves to be happy for them daily. Then we can genuinely do so the once in a while we run into them. Lol ;-)

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    4. Just remember, her life is not that great...that's the other side of Facebook - people get away with their embellishments and lies. Even if it was ALL true...I know *I* could find something wrong with her life - and you have something she doesn't - a super fantastic different viewpoint on life.

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  13. Yep...hide the feeds my friend. It has given me peace ;-) There is no way others will get autism, unless they live with it. No amount of reading or explaining on my blog seems to help with most people. They still complain about the stupidest shit. Autism has at least given our family perspective!

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  14. This post rang through on so many levels especially the birthday party part. Maybe I need to use the newsfeed hide feature more on fb.

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  15. Good Read ! Totally get it ! I have to catch myself, (my smartass sarcastic can't keep it from flying out of my mouth self) We all know the ones, Drama Queens , Oh poor me blah blah blah , her "normal kids now have 3 DUI's, one interracial baby that no one knows who the father is, two wrecked cars ETC..... every day(at work) I listen to her on the phone drone on and on OMG STFU !! My son will never drive , I let him have a shot on the tractor, he hit the house, my fault, but he'll never forget that day and still talks about it ! My son can't tie his shoes but he can program fios , my son won't ever live alone, graduate from Harvard ,buy his own house, but he can drawl cars and trucks and tell you any make and model of vehicle on the road. He spins in circles, bangs , flaps and yells, how do we apply these traits ?? Airport flagger ? Simeon says leader ?? I get frustrated too , I get it I do, and I'm not whining I'm just stating the facts. AND the facts SUCK ! I would however like you all to know that my son listens to Classic Rock, WMGK, John De Bella ! He was singing Steppenwolf , word for word while cheering for me to win Led Zeppelin tickets, text LED , LED MOM !! WOO HOO SWEET ! So I guess I don't really suck as a Mom, my kid will at least hang with the cool people, listening to good tunes !! Remember it's the little things !! :)

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  16. Amen sister. Afreakingmen.

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  17. I know exactly how you feel. The picture thing I am there too. I dread it all too why are people so judgemental. They act like we are the villains it is awful.

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  18. Keep your chin up. You are not alone!!!

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  19. I see both sides...i don't just have one autistic but two and we also have two that are typical kids. I get whip lash sometimes from switching modes but i do it. Sure i complain about the autism crap it sucks! But we also rejoice in the typical as well. I see having both as doing the same being a p

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  20. Well said. I follow/read a lot of your Facebook posts and from your descriptions, our sons have travelled very similar developmental paths. My son, John, is nearly 7 and I am just starting to feel the years of therapies come together.

    I want to share with you my FB status update from April 2nd."April is Autism Awareness month and today is Autism Awareness Day. Over this month I am going to post a few of my own thoughts/memories/experiences of having a child who is Autistic. Today I want to let you know about one of the biggest obstacles I have had to face... bitterness. It has been a long, challenging and rewarding road with many more steps to take. It is important to me and the continuing success of my son that I do not take a path of being bitter. By being bitter I mean not allowing myself to think that my experiences deserve more credit then others who take their children's development for granted. For a period of time I found it difficult to hear about the success of other peoples children - especially when they brushed it off as "nothing they had any influence on, they are just naturally amazing". I can now say that I believe there is no need to be bitter about others successes - you just need to view your own as being equally valuable and rewarding. :)"

    I would love to join you with a side of fries :)

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  21. Loved this posting, like so many others, espicially the part about taking photos! I have 2 sons with Autism, one daughter that has physical developmental delays and 2 NT step-daughters. There are days that are amazing and others that I just remind myself to keep moving methodically forward throughout the day because eventually it'll be over lol. Love your blog!

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  22. I am so with you. I'm so grateful you've said what I'm thinking.
    I think I've said the same thing in my barely-written blog: http://effinautism.blogspot.com/2012/12/uncomfortable-truth.html

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  23. I understand how you feel. I don't have children. All I ever wanted to do is be a mom. Its looking like that will never happen, My siblings are have lots of kids and my in-laws also. my best friends have kids, my co workers,my church family, most of my friends on facebook are sharing their kids and now their grand kids. No matter what the challenge, cost, the heartbreak its still better than the emptiness of nothing. Watching everyone else have your dreams and know that your time is almost up and there is nothing that you can do. Sure your a good sister, sister-in-law, friend, aunt. But you will never be a mom. And you grieve for the miscarriage and the emptiness. That emptiness never goes away. it just gets harder. I sympathize with your hardship but you have a wonderful family. I would trade places with you any day!

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    1. I can feel your sadness and pain in your words. I'm so sorry for your struggle.
      Hugs!

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    2. That is so heartbreaking... I would feel the same way as you do... I'm pretty sure. I am fortunate to have been able to have my 2 biological kids. My oldest daughter has some very serious mental health issues. My son, so far, has not had such problems. My husband and I decided to adopt instead of having a third from my tummy. Of course I am thankful and love and adore all 3 of my "babies," my littlest daughter .... is the absolute love of my life... if there is any possible way, please consider adoption... it has changed my life. You sound like you long to have a child of your own.... well, I am living proof that adopting is a child of your own.... I realize it is very forward of me to say this, but your comment really moved me, and I get what you are saying and it's hearbreaking to have so much love to give in that way, and not have a child to give it to... My comments come from my heart... I mean no disrespect.... I was just hoping maybe if you knew how much I relate to your pain,well... I was hoping it would somehow help.

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    3. Thanks, we have looked into it and its just not financially possible right now. With the job market the way it is right now and my husband is only working part time and has not been able to find full time work. Its been one thing after another. I have cousins that are adopted and I am not opposed to it just can't afford it. frustrating and heartbreaking.

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    4. What about fostering a child? There is such a need for good stable homes.

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  24. Thank you for saying what I've been thinking for a long time. It feels good to know I'm not alone in my thoughts and feelings. Although I'm blessed with a NT child I still wonder why both my kids can't be typical. I wish I didn't have to see one struggle so hard to read and do basic math and the other sail through school. The only way I can make sense of it is to think that God gave me one easy kid so I can have the energy and stamina to fight the fight for my special needs child.

    Thanks for keeping me going with your humor and honesty!

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  25. I can soooo relate.... I was so thrilled the day my daughter wanted to and asked a friend to sleep over... her first real playdate at age 13.... when I read fb, often times the post is basically saying, "I'm so great, my kid's so great, and don't you wish you were as great as me?" It's like getting that dreaded "Christmas letter" on a daily basis. But, honestly... a ton of the stuff that people write... is such fantasy... it's almost comical... example: friend tells facebook what an incredible life she is having.... how great everything is.... I'm like, "Wait, she just told me yesterday that she just caught her husband having an affair." My point is... don't buy into the BS.... everybody has their own challenges... but on the other hand.... just one day with "normal" challenges would be so so appreciated... there are days where I truly feel like I'm living in an entirely different universe then the neighbors whose kids are "perfect."

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  26. spot on! just spot friggin on!! Thank you for this. I feel i have Finally found a place i belong on this book of face! Much love to you from me. :)

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  27. Awesomeness! Great post. Though my kids are so called "high functioning" I still have a tinge of resentment for my brother, the one who was a pain in the ass growing up with, now has these perfect, well-balanced, accomplished kids! They are beautiful! And they're always smiling! I love them dearly. But it still kinda pisses me off. Ssh! Don't tell anyone.

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    1. I hear ya Karen! Perfect, well-balanced, accomplished?? Who needs it? :)

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  28. Yep I can relate as well. Perspective sure is something huh? I had to unfriend people on FB I couldn't take it. Like you said yes those problems are real to them and I get it, but seriously?!

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  29. Oh yea, I get it! My brother once told me he couldn't get together with us because his 6 year had too much homework in her accelerated reading. I wanted to vomit on him! Maybe I should forward a copy of this post to him....

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  30. Just found your blog, and i gotta say I totally get you! I have twins - one NT and one ASD... so i'm basically living half a life in each role. Totally sucks, and I feel completely torn all the time. Such a headache just thinking about how even deal with something like a birthday party.

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  31. Right on, sister! I totally understand and appreciate this post! Tate has his 2nd birthday party like ever this weekend. I get to stay and mitigate situations that may arise during dodgeball.

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  32. Amen! I'm in the grocery store just today, and I hear this little girl trying to get her mom's attention. She's saying, "mom. mom. mom. mom...." and I just want to grab the mom and say, "Listen to your kid!! Answer her!! Do you know how thankful you should be that your kid can SPEAK??" But I just push my cart on and think to myself that if and when my six year old girl starts talking, I vow to listen to every single stinking word she says. A kid who talks too much - a problem I would LOVE to have.

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  33. Been there. I feel you. Autismwonderland sent me here.

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  34. This is SO TRUE!! One of my friends keeps posting status updates on Facebook of her 20 month old son chatting away while my son is still nonverbal... I don't want to but sometimes I almost cannot stand it. Cannot stand her.

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  35. i have autism one thing that hard is ingorent people they allways think they no everything .or other who maybe jelious of you why have no idea have one realtoved think is she thinks i have everything an live in some other world were dont no what going on ,just becuse i have autism an cant express what i no or talk about iusse that other discuss dosnt mean i or other likew me dont understand what going on or know about them .it so annoying .or being spoken to like im 4 year old ugg

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    1. Thank you so much for saying that. It's an important reminder to me that my son probably understands a whole lot more than I think. Just because he can't tell me what he's thinking doesn't mean he doesn't get it.

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  36. Holy cow, it is like you just crawled out of my head and said what was on my mind. Love this. You rock. I have a teenager who is neurotypical, so I get to go to Tennis matches all the time. Never once do I complain. Then with Ava girl, she is 4 and on the spectrum...she loves going, but we have to have a variety of stuff to keep her busy. You know what else gets me going? When people are like, "Oh my god, my kid won't shut up." Really? It must be awful to have a kid that talks. (Mine is nonverbal, but signs and is starting to repeat.) I just want to punch them. In the kidney. Anyway, awesome bloggy!!

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  37. Ah the awards are the WORST! My brothers kids get super fantastic kid of year in EVERY subject, every quarter...and perfect attendance to boot!

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  38. Here's my thought: I do not feel too jealous of the super-achievers. I've raised a couple of those, too. But what really makes me sad is that the "typical" parents never give my autistic kids even a passing glance. I truly am happy for them and their kids, and all the great things they are able to do. It is fun to be THAT parent, and they should enjoy it, but just once in awhile, I would appreciate a comment or a nod my way. The daily struggles of these kids is not always Facebook worthy, but I think a little recognition would be nice when we pull off something really difficult. Lucky we have online friends I guess!

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    1. Believe me when I say that you should post your struggles & your successes whether you think they are facebook worthy or not. I know someone with an autistic child & I love to hear about & celebrate whatever successes they have. Since I don't live nearby, facebookis how I get to keep up with the progress.

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    2. YES! I agree. I post the 'celebrations' now. My 13 year old daughter with AS finally put her head back into a shampoo bowl and let my friend wash her hair and cut and style it at her shop (not after hours) but in peak time and she was a bit nervous, but she held it together. You better believe I posted that. Of course the ones who walk my walk celebrated too and cheered the loudest. The ones that don't walk our walk, but yet love me or my daughter cheered as well. And I'm sure there are plenty that didn't say a word who silently smiled, and probably a few who were thinking 'what the heck?' Don't care, that is my real life and I'm not going to cower or be ashamed just because somebody doesn't get it. Living out loud now has been very cathartic and has helped me reach a new level of acceptance for my sweet girl. Look, we ALL have celebrations, we ALL have disappointments, we all have dreams. Yes, have had to redefine those dreams a lot, but I still have them. Just because they are different, doesn't mean that they are less.

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  39. You need more autism moms and dads on your friend list to even out that newsfeed :)

    But on a more serious note, as both an autism mom and a cancer mom, I feel what you feel two-fold, especially since my cancer fighter died in January. And the conclusion my DH and I had come to was this - There's no way to win the "Who has it worse" competition. Someone will always be dealing with something worse, in one part of life or another. Grant that your friends with healthy, NT kids will never completely understand how good they have it and keep scrolling.

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  40. I totally get it. I have a neurotypical 17 and 14 yr old and my 5 yr old is high functioning. She can talk, express emotions and follow simple commands ect. And it is hard for some people to understand what it's like to be in our house for a day. It has taken some of my family this long just to understand that we have a "time limit" on things. If we are gone somewhere for more than and hr and half, she starts to get anxious. Then if we don't leave soon enough, she gets angry. Some people just don't get it and never will.

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  41. Everyone has their own problems. I can't stand people who act like their kids have it SO much worse than others. I understand Autism, but just because a child doesn't have Autism, doesn't mean they're a perfect angel & it doesn't mean their parents "have it easy." At least you get help & support through various programs. Your child will get special treatment just because of an Autism diagnosis, mine won't. Like you said, the grass is always greener...

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    1. You have got to be fucking kidding right? Either your'e a troll or a total arsehole. I'm going with both. Fuck you! ^^^

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    2. Wow, seriously? The fuck is wrong with you? Please explain how you "understand autism" when you CLEARLY have no fucking clue.

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    3. Oh my gosh! You "understand autism"? Fantastic. Come take my son for a weekend.

      You'll eat your words so fast.

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    4. Dude, where did I write in there at all that the parents of NT children have it perfect. I did not. I even stated that parenting is hard, period.

      And pray tell, where are these "magical programs" that help with our kids? Are you referring to the thousands of dollars I spend out of pocket for therapies just so my son one day might write his own name without help? Carry one a simple conversation to tell someone his name and address? Be able to tie his own shoes? I haven't signed him up because they are babysitting.

      Oh his autism diagnosis is special treatment? You will find under the law he is entitled to a free and appropriate education. If a typical kid needed tutoring in a subject, would you deny them it because that becomes a "special treatment"?

      You "understand autism"? No sir or madam, you do not.

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    5. "Your child will get special treatment just because of an Autism diagnosis?" If, by "special" you mean bullied or ostracized. If by "special" you mean speech and OT and behavioral therapy 25 hours a week just to possibly have a chance at some kind of independent life someday. My 4 year old typical daughter can be very challenging, but when she's crying or whining, I know why. She can tell me when she's tired or sick or even just hungry. My son is almost six. He doesn't speak, isn't potty trained, and has very little concept of danger. We cannot travel, rarely go out to eat, and had to pull him from school because NO ONE could properly educate him. So don't talk to me about special treatment or support programs. Please.

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    6. You know what? I think it's awful that you all jumped on her (I'm assuming it was a woman) like a bunch of wolves. Even if you feel like she can't possibly understand, your reactions were extreme and hurtful. Can't we all just support each other as parents? These people who are posting their first world problems - they may be keeping their hardest problems to themselves. I suffer from post-partum depression on top of regular depression, frequent anxiety attacks, chronic pain, etc. and my daughter has problems of her own, but I don't post that stuff on Facebook. And I don't fault anyone who does. But people who know me, except my very closest friends, have no idea what struggles I face on a daily basis.

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  42. What bothers me about the whole thing is that parents SIGN UP FOR THAT SHIT! I just read a post about how hard it was to drive her kids from gymnastics to church to karate to etc etc etc.

    If you hate it so much, why are you SIGNING UP FOR IT?!

    Also, do they have any idea how freaking lucky they are that it's even an option? What I wouldn't give.

    I've had to hide so many people. I get that everyone has issues and hard times. Autism parents definitely have the market cornered on trials. But gosh, at least they know that at some point they will stop running their kids places, they will stop having to wipe butts and be constantly on guard.

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  43. Yes yes yes. I especially connected with the whole idea of "facilitating" any interactions with peers. We're on all the time, even when it looks like a casual encounter. I'm exhausted! I try hard not to compare my insides with others' outsides (especially on Facebook), but I think it's OK to acknowledge that this is HARD.

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  44. Wow. Clearly we should be allowed at least one pity party every now and then. You bring the fries and I will bring the tequila!

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  45. OH.MY.GOODNESS. Just found you via Barnmaven's blog. I love you already, and not just because our blogs look alike. Wanna come over and have fries and adult beverages? Bring your Aut kid. I've got at least one, too!

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  46. It doesn't even register with me when my friends with NT kids do any of this, it's the other ASD moms that make me feel the jealousy spikes. I am in awe over how many of them whisked their ASD kids off on long plane rides to fabulous tropical getaways during Spring Break and had the most perfect time ever. I could go on, but I won't. Harrumph.

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  47. I just wrote a huge response and it got lost! Ugh! Anyways, I get it! No friends, no parties, can school you on Batman and geometry but doesn't know his phone number or what street he lives on. Social Media is a blessing and a curse. Our 16 month old baby girl died 2 years ago. Every time I see a "complete" family photo, I want to throw my computer across the room. When I see vacation photos I think what a nightmare it is to have my boy away from home, his anxiety level goes through the roof! I laughed out loud about the "climate controlled" situtations. Thanks for saying what I think!

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  48. Couldn't love this post more... I've been sharing with everyone! Thank you :-)

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  49. the photo part is sooo true. Thank you for sharing. so 1000% true.

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  50. I can understand why it would hurt you to see others "problems" on your newsfeed. It makes me wonder if I ever complain about something my son does that others would wish to be their problem. Thanks for sharing such an insightful post. And a big fat boo for "Anonymous" above and his/her "special treatment" comment.

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  51. HAHAHAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA. Tell it like it IS.

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  52. I know your struggles are tremendous. My best friend and next door neighbor has two children on the spectrum. We are close enough friends that she'll show up in pjs and we'll cry on the front steps. I've diapered, feed, read and carefully watched her kids stim as needed. I've listened to long lectures on all sorts of subjects and I know to keep a certain brand of nuggets in my freezer in case we need to feed their kids. Now I don't truly get it because I don't live it but I see with open eyes.

    But please remember some of those things that seem braggy are just what other families are doing to hold on. Yes I post about my sons sporting events regularly. However both have ADHD and sports keep our house from exploding. One has another LD and sports is what saves his self-esteem. So it may look like bragging but it's really just how we get by too.

    So I may bitch about driving from soccer to swimming, or hours and hours at a meet. But if my kids don't run themselves out of energy, the meltdowns and tantrums can be epic. I may bitch about homework b/c with my ADHD and LD kids it is so hard to do.

    I'm not saying my "hard" is your "hard" but can't we just all try to remember that everyone is battling something.

    Now that family on the second cruises? hide those people.

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  53. I'm autistic, in two bands, in three honors classes, capable of lifting heavy objects, and have As and Bs (that I want to raise to As). I'm sorry if the introduction sounded cocky, but this is what I do so I have a defining factor of who I am. I'm not top of the class, first chair, or the strongest, but I'm fine with that. There are many others who aren't and those who are aren't perfect. Do you see trills, gruppettos, or glissandos in trumpet music other than really avant-garde pieces? No. Do professional flutists have to have an extensive selection of mutes? No. Do pianists need to breathe to play their instrument? No. Do guitarists use bows on their instruments? No. Are they all musical instruments, regardless of playing method, size, or difficulty of music? Yes. To quote Plato or whoever this quote is attributed to, "Be kind, for everyone you meet is fighting a hard battle."

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  54. I know this is an old post but I have to chime in. My six and a half year old only has sensory processing disorder (he has many autistic tendencies in speech and social but not enough to be on the spectrum) and speech issues (he was speech delayed, has articulation issues, possible Apraxia). His issues are not as severe as many kids, but he struggles a lot more than typical kids. I remember being both mad and upset when I would check into his birth board on BabyCenter and read of kids his age doing things our son wasn't. I finally had to leave because I was amking myself sick wondering what I was doing wrong, asking why my kid wasn't like others his age. Keep in mind that, while we knew at two that he wasn't on track, it wasn't until he was four that a doctor listened to us and he was diagnosed. I really though I was a crappy parent (I still do, actually).

    When our son was diagnosed, I posted on Facebook, a lot. I had a flood of support. I had some negative comments, sadly from longtime friends of mine, who think SPD is made up. I stopped posting about the struggles and started posting about the triumphs. The thing is, his triumphs are what many parents don't think about -- letting water touch his head without screaming and flailing about, using a public bathroom (he went nearly a year without using a public bathroom), getting in a bounce house (even just for a photo with his teacher from last year), not hiding under the table and crying when someone sings Happy Birthday, coloring in a whole line on his Rainbow [Sight] Words rainbow (which is a HUGE deal; last year he never colored a single word; this year he has 37 so far!), things like that. Most of my friends understand what a big deal it is and share our joy, which makes me feel not as alone.

    Speaking of alone, we cannot do birthday parties either. The parties we are invited to either involve bounce houses or water, two things my son loathes. We've tried to go some, but I leave in tears because of the stares from other parents due to my son wanting to go off and play alone (or with me) and not interact with other kids. We cannot drop him off. We cannot go to some social functions (either family or connected with friends from church) because the location would be bothersome to our son. I do get bitter about it, but never at our son.

    Sports? Not happening. Our son freezes up when people look at him. He willingly participated alone in one of ten events at Olympic Day last year at school -- running. He's a fast runner and was doing great ... until people started cheering him on. He stopped, started crying, and walked to the finish line. It broke my heart; he was upset the rest of the day. I'm glad he doesn't want to do sports, as I don't want to deal with the hassle that comes with it, but I do wish he could open up and realize that it's not so bad when people look at him and encourage him. :)

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    1. Stacey-There are SO many online resources - I hope soon you won't feel so alone.

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  55. I so get this. Social media can be a pain, and very deceiving... we've been in your country for a week now, trying to 'do' Disney, and it just ain't working for our ASD girl. My photos may tell a different story as I've managed to snap the odd happy looking photo and of course they are the ones I post. But I so wish we could have that easy type of holiday that most others get, with the general tired whinges but still able to do things. I've sat in our villa all day today, with just a trip to Walmart and Target to hunt down vital and specific MLP supplies....whilst my other half and eldest got to go and enjoy themselves at a park. That sucks. But it was the best choice to make. Anyhow, waffling now, I hear ya and join you in the pity party :)

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