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Saturday, April 22, 2017

Sad

I am not sad because my kid has autism.

You know what I'm sad about? It's all the other stuff that comes with the autism that can get bent.  The crippling anxiety, the obsessive compulsive disorder, the sensory processing issues, the hyperactivity, and the one that makes shit really freaking complicated, the intellectual disability.

Ya see, this is the kind of autism that doesn't get talked about in the glorious month of Autism Awareness.  Or at least I haven't seen it because my social media feeds is swimming in all the feel good inspiration memes.  Or the token stories of an autistic person that has some special awesome talent.  Which is cool. I don't begrudge these memes or stories but they are just so constantly one sided.  It's hard to feel hopeful and renewed when I know that this will never be our story. Not even close.

I have an almost 13 year old kid who still believes in Santa Claus and the Easter Bunny.

I have an almost 13 year old kid who still watching Baby Einstein when he wants to unwind.

I have an almost 13 year old kid who's bedroom looks like the Island of Sodor exploded in it.

I am not sad that he's not into typical teen aged boy stuff.  Although, to be honest, I'm not sure what that would even be.  What are they into?  They seem like such mysterious moody creatures but I'm pretty sure it's not searching for out of production Blue's Clues DVDs online. (Thank you sweet baby Jesus for eBay.)

I get sad that even when I am planning something that should be a fun, it's coupled with so much stress and back up of plans in case it goes bust.  Since it has so many times before. It makes me not want to go anywhere some days and I really have to talk myself into pushing him and myself outside our little comfort shell and try.  Plus, Kiddo has a built in bullshit detector. He knows when I am faltering. Just for once I would love to just be able to say a thing that should make him happy and not have to pull out a social story to go with it.

I think what gets me the saddest is that for every "feel good story" that I see my "civilian" pals sharing, I wonder do they really get what the day to day grind can be like? No mainstream media is covering that story.  The worry, the stress, the frustration.  Guess what folks? It's not fake news. It's our life.

And you know they aren't the ones reading this blog.  It's cool you guys are here but man, I kind of wish they were so they could get it.  I'd invite them over but that has it's own stress filled complications. Unless they bring "window fries because well, fries.

That's the stuff about autism that I want people to be aware about.

Here's your token inspirational shot of my autistic Kiddo walking a long journey.  Wait, I forgot to slap a puzzle piece on it! 







27 comments:

  1. thank you for your honesty and giving me a chance to share so perhaps people can gain a bit of understanding.....although my guy is only 7, I feel the exact same way but would never find the words to express without offending people........Sherry in Toronto

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  2. You're awesome and every word is so true! I'm sharing on my wall in hopes that even one civilian will read it! Thanks for your blog...it is a true gift to those of in the trenches with you! (My oldest is 20 and while all the kiddos he graduated with 2 years ago are getting jobs, girlfriends and going to college mine sits at home playing video games because the world is just too much!)

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  3. My boy is 4 is non verbal and loves my little pony and is frozen mad, everyday is a new challenge, keep going your doing amazing xxxx

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  4. Thank you for this! Some times I feel alone in this. My son is 8 and acts half his age, and people don't get it and say "but he knows so much about pokemon". Ha, but he was into pokemon since he was 3 and it wasnt popular and would ask why didn't like things/play like T ( his cousin 2 months younger). People, even family are quick to say "but you did such n such, he probably wouldn't be like that. We relate so much to you, thank you for your honesty and rawness.

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  5. I'll comment as both a "civilian" and as a member of the mainstream media. I try to understand. But I don't have the insider view that you do, and never will fully understand. The complex constellation of autism is difficult for someone else to understand. I look at my young grandson and see that even his neurologist seems to waver around on whether it is, or is not, autism. The best diagnosis I've heard is, "He's on the spectrum." As a healthcare journalist I can only write and explain to my readers a small slice at once, like new interventional approaches. It is too bewildering to try to understand and explain all of it at once, and it would bewilder them as well. Keep plugging along, telling your story in simple words. You'll get the truth out there along the journey.

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  6. Thank you for your honest writing! Everday is a struggle i get that. I really do! Going anywhere is a challenge and worry for us too. I have a almost 5 yr old and when he tries to hit and bite or bites the teacher because he is frustrated with communicating ect my heart breaks a lil each time. It is not the part of autism people want to hear . ((( hugs)) to you and i pray your days get better with time. Hang in there.

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  7. Thank you, Mama Fry! I have been following your posts for awhile and I really relate. My son is 14, with autism and an intellectual disability, and I gave up the rah rah light it up blue stuff a long time ago and for the same reason as you. It's hard to celebrate when puberty looms along with Daniel Tigers Neighborhood and My Little Pony (and the Island of Sodor explodes all over my house, too!). My mantras are "It is what it is" and "One Day at a Time" (which is sometime "one hour" or "one minute"). Thank you for writing and sharing your experience. We are a community, too :)

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  8. You're speaking the words I feel so often. I have 4 kids. My oldest son Is 18 with aspergers, who fits the mold of "oh he's so smart and quirky." I have one son who's 10 with autism who challenges me every chance he gets. It's truly hard to see your son struggle and truly can't do anything to help him. My son often says his life sucks. This breaks my heart. Trying so hard to help him learn how to be happy. Thank you for being brave enough to share your life with us! I wish I was as brave as you. Libby in Joliet,Il

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  9. My 20 year old is mostly non verbal, Blue Clues, Toddler Tunes, Paw Patrol, Peppa Pig, itunes loving, french fry fan with autism, and ocd (we will never lose a remote control)with an obsession for receipts. I love your posts and I just want to say "I get it"

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  10. The island of Sodor������! I love your honesty!

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  11. My son is going to be 18 & wants officer hops & pinky pie! He's got acne, he watches cartoons with his 5 year old sister & has nothing in common with his 13 year old brother who started karate. We have to decide if he can handle a trip to the zoo or even to target. He was non verbal & has come a long way, but by no means is at age with the other kids. He wants a cell phone because his classmates have phones. He can't even cross a street on his own! He's going to be 18 but stuck in a 3-5 year old mind! He's too big to throw over my shoulders anymore. Oh ya he also "doesn't look autistic" or "he looks so normal"! I have to live forever because there's nobody out there that knows my son like I do! Stress ya I'm stressed! My immune system is shot & I've been sick 2 weeks every month this year! Then my younger son's dad passed away! It's never ending....

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  12. Yes, this. And wandering. Also having a kiddo who can't be left alone in his own home for his own safety.

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  13. Such is our life too. Right down to the fries.

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  14. Such is our life too. Right down to the fries.

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  15. I feel ya, girl! My 13 year old son loves Thomas, Cars, and that stupid Elmo's Potty Time video. (Thank God to whoever posted it on youtube....I owe you!) My 9 year old daughter still wets her bed, wets her pants, and poops on the floor of her bedroom. She enjoys watching the same 2 second clip of Dora the Explorer 1000 times in a row! And if I turn my back on her for a second, she disappears, so we live in Ft. Knox. I guess somehow that stuff just doesn't lend itself to catchy slogans.

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    1. Lol! Fort Knox!!!! I totally totally get it. We're going broke with upgrading locks. We just got Angel Sense! That is a huge load off our minds when he's out in public with us. He's an eloper and runner and non-verbal.

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  16. Amazon Prime has alot of the Steve Blues Clues episodes. Our girl loves it.

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  17. Life with an Autistic child is truly an adventure. Thank you for your post. My son is 40 years old. He was diagnosed just before he was 3. In those days the standard was " it's the mothers fault...she didn't bond with her child". So along with dealing with your child you're also having to deal with the doctors. And I have no patience with doctors. My son is mostly non verbal...I say mostly because if you're not with him a lot you'll never figure out what he's trying to say. He functions on the level of a three to five year old depending on the task and his mood. He has little understanding of the world around him. Through the years the rocking, spinning, flapping, screaming and other traits have mellowed. He still holds his ears and hums real loud when there is something on the tv or radio he doesn't want to hear...and every waiting room and restaurant has a tv. Makes doctors appointments and even dinner out interesting. Finally got him out of diapers and mostly potty trained when he was about 21. He still requires assistance in cleaning himself and we have those days when he must think the toilet has moved when he goes to pee. We always have to remind him to hit the water. He has some other medical conditions...He is blind, diabetic and has seizures. So daily living is an adventure. I learned a long time ago that having a special needs child is a blessing. People always say " he was given to you to take care of". But I think they are wrong. I was given to him so he could take care of me. He has given my life meaning, purpose, focus, a reason. I wonder sometimes what kind of mess or drama my life would have been without him and I am grateful every day. He is my oldest child, I have 3 others...all happy and healthy...and 9 grandchildren...Life does go on. So to all you young mothers out there just starting your adventure with your very special, amazing child...just remember...there will be days that are hard but your child is there to help you through them...you just have to let them. Take pride, joy and grace in your journey.(I published as anonymous because I don't have any of the other options)

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    1. I love this. Thank you. My kiddo will be 13 this year and I hope when he's 30, I will have been as much of a wonderful mother as you. He has given me purpose and a reason too.

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  18. I totally get it.mine is ASD w/intellectual disability among other things.almost 10 and he's a big boy. .almost 11 lbs at birth.meltdowns are a thing,he goes to daytreatment and it takes 2 staff to restrain him.I have to do that alone at home.no back up.plus I have major chronic pain so when I get the brunt of the head butting and kivking,slapping,etc...yeah.or I'm licked..yes,I get licked by him.he's smart enough to manipulate himself out of something yet at same time I see how he just can't process.still wets the bed,everyday is complete bed change.hard when family,cousins same age spends the night cuz well...he's wet and smells.not any friends,we're isolated and alone.single mom and no natural supports,only 2 friends that accept us but they have their life too.no support tho on paper it's all glorified.on 3 agency wait list for 2 yrs now.he takes meds and our normal is nowhere ever ur typical mormal.food, ugh..I make 2 dinners.one for his brother and sister and one just for him cuz god forbid he'll eat what I made.so frozen dinner,chicken fingers w/mac cheese, ramen noodles..etc..u know.NO KETCHUP..food completely ruined if Event a tiny stain of ketchup. .try telling mcdonalds why my son having a behavior cuz I said 5x plain..meat and cheese only...we mostly rejected..errands are done rushed in time he's at school..store runs are just a freak show w/all the stares and glares and comments.I swear ima bitch slap the next one.oh I get it.my own mother won't help me.it's extremely lonely.what back up plan?I have no back up in way of help.but going thru expectations 20x and still a behavior and other people just assume I'm bad to him.professionals that don't ever really listen to u..until something happens then ha,I told u so u fool, some professional.it's hard..hard on me and hard on him cuz when he's in a hood spot,there's no friend to play,no one to invite for bdays...everyday struggle thats just impossible. .how in hell can we keep on?but..u do.u do cuz it's ur baby..u do cuz u know them best..u do cuz u and me and similiar have unconditional love.that ..this will test all that.cuz if conditional, then sorry..want a refund.but life isn't that way.we are never normal. .never will be normal.ur sooooo exactly right on the thinking and perception of such.ur kid,my kid,similar kids..yes u just wanna pull ur hair (wait,they already did that for u,pull hair)but u go on.u keep on.u love on.u don't give up,its not an option,ever.thx so much for sharing.I hope u read this and don't feel quite so looked over.yeah,mine may never be anything.maybe a gamer,he's almost 10 tho.still cant read nor write.but he games.idk. .not there yet.the reality kinda pushes whatever hope aside.but on good days, still be joyous over the tiniest victories, on bad days just breathe.in the end,love.

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  19. I've often thought the same thing. I live in the World you live in w/minor variables but many more compatible traits than none. My son just turned 13 on 07 April. What should've been an exciting time in his life & mine has left me feeling heartbroken & sick to the point I can barely eat & keep food down. I'm by no means depressed my son has Autism nor do I want sympathy for how I'm feeling. I just wish people would understand not every story is a "fairytale ending" as seen in the media when it come to Autism. Instead of being happy my son is a teenager now, I question how hard it will be for me to hold & hug him when he has a meltdown so he doesn't hurt his brother, me, or any other family member. There will be no excitement & counting down to the day he can go test for a learner's permit like we are for his older brother. I have fears that he may not be able to cope w/having a job & the possibility he will always need someone w/him to make sure he doesn't wander off by himself. I don't know if he'll be able to even leave by himself & I cry @ even thinking about him living in a house for Adults w/Autism because I feel like I'm committing a sin & that way of thinking makes me seem like I view him as a burden. He wants to be in the USAF, he wants to be a pilot, he loves all military aircraft & wants to @ least work on one like his father has for the last 18 & 1/2yrs but, when he ask or says he's going to do such, I can't even look him in the eye & answer the questions he has about the career paths he wants to take. Then there's the kiddie movies he will watch then he rewatches over & over, & over again from afternoon until bedtime only to start the whole process (w/the same movie) all over again the next day. Media stories about Autism are great & upflifting for those who have not experienced the debilitating side of it & the stress our kids go through w/meltdowns & frustration. I don't know about you but I feel....helpless, hopeless, & overwhelmed by the worries I have. And April hits, the one month I try to raise awareness, make things to sell so I can proceeds to some local Autism Awareness society or ABA Therapist (usually my son's ABA Therapist). I try spreading word via media outlets, letting them know the hardship of basically being a single Mom due to my spouse being in the military. No one wants to listen or hear worries & fears about people w/Autism who aren't a genius in some area of their life. So, as you stated, I am not sad my son has Autism...I'm sad not every angle is covered for Autism Awareness as it should be. YOU are NOT alone because I'M right here, going through what you're going through, saddened by the lack of coverage of what Autism is like w/out rose colored glasses...the true side of Autism.

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  20. There are no words to ease your worries and fears all of you ladies are a gift to your children. My thoughts and prayers go out to each and every one of you. My son has Adhd his young years were extremely difficult and similar to yours as he got older my concerns grew because I felt that there was more going on then we knew about a very dear ladie recommended THE AMEN CLINIC .They did a brain scan on my son and we were surprised to find he had severe anxiety.I finally felt we had all the pieces of the puzzle necessary to administer the proper treatment we addressed the issues over a period of time and were successful. I just wanted to share because had we not had the proper diagnosis theres no way we would have been able to get him the proper care .They are very compassionate at the clinic and their main objective is treatment of the brain .I hope this information is helpful God Bless !

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  21. I so get this. Especially how much planning and anxiety goes into something that should be fun. This is an important aspect of autism that the general public needs to know more about.

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  22. The picture of your son walking along the rail- i know this place and I visit often and every summer at the shore in NJ Although I do not have a son with autism I do have a unique boy who has his schedules and his habits. But nothing compared to what you go though in every day basics . Have fun along that rail as I take my son every year to fish at the inlet and eat at Carlsons. We have a bench there with my uncles name on it - as this was always his happy place and hope you and your son are happy there as well.

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  23. Here in this house are 3 aspergers, me and my two daughters, we don't have the intellectual disability, more the opposite, but it might look like an advantage but it isn't. We do understand everything but we can't participate life the way others do and we realise it everyday. We get all the theorie but we can't use it in real life, we frustrate ourself because we know what the others can do and where we fail every day. It feels like we are failures. We only have had our diagnoses 2years now so we still are working out how to deal with it. But everyone thinks there is nothing wrong with us cause we can copy their behaviour when we go outside, we are being punished because we try so hard not to be noticed. Autism does complicate lifes, i don't hate it but my life would be much easier if we didn't have it. Big hugs to everyone, the struggle is hard but everyone makes the best of it <3

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  24. My boy is 4 is non verbal and loves my little pony and is frozen mad, everyday is a new challenge, keep going your doing amazing.Cartincoupon.com

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