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Monday, January 15, 2018

Kiddo's Squad


New year, new blog-ish.  Well, not really. I thought it would be fun to try a little something different.  You see, there is one thing I know with our lives with autism. It's that we have been lucky enough to meet some really amazing people. In this case, it started because Kiddo was her client. Whether she planned it or not and because I have boundaries issues, became friends with as well! 

Who is this person? Well if you follow me on my Facebook page, you might be remember me referring to the "Magical Speech Therapist Who Graduated From Hogwarts And Gets My Kiddo To Eat Things"! Why yes, Let's meet Kelly Sheehan of Abilities in Action!   (Give it a click if you want to find out more about this amazing group of Speech, OTs, and PTs.  Seriously. Fantastic group and I've spent so much time there that I'm surprised they didn't name a chair for me in the waiting room.) 


"Miss Kelly" and the Kiddo got along like gang busters and I must say we both miss seeing her weekly.  Kiddo was discharged last summer. :-(  However, she's pretty supa fly and when I have a "WTF?!?!" question, she always answers it and sends "Hello" videos to Kiddo.  I kind of thought it would be kind of cool to ask her some questions about Autism, Speech and Feeding Therapy, and how Kiddo and I managed to traumatize her when Kiddo lost a tooth and SPIT IT OUT INTO HER HAND.  Sounds like fun, right??  Here we go! 



What made you want to become a Speech therapist?   "In middle and high school I was an office assistant in a small Physical Therapy practice and loved watching the PT basically fix her patients--- BUT I was not in love with the coursework that PTs have to take.  My supervisor suggested I observe her friend, a speech therapist, because she thought I would make a great one.  The rest is history...."



What’s one thing you learned “on the job” about Autism that you didn’t learn in a college/grad school course? "One thing???  I received my MS in 2000.  18 years ago we didn't have specific coursework in Autism so I basically learned everything I know from my first job on.  But I can tell you one thing that amazes me about kids with Autism that I know you could never learn in school.  If you just take some time to "be" with them, you can understand a whole lot about how they are feeling and what motivates them, even if they don't or can't say a word."


What’s one mistake you see parents/caregivers making in regards to their kids?  "Not sharing information with therapists.  I imagine parents may sometimes hold back information because they are afraid of being judged (btw, if their therapist is judgmental, they may want to find another one)-- but the only way to maximize the effectiveness of a therapy session or entire plan of care is to have as much information as possible regarding what is going on with their child."
    

You are my “magical feeding therapist from Hogwarts”. What’s one feeding tip parents can do at home? "I can't stop at one.  First, do not force a child to eat anything, even if they were told to do that from a professional.  Second, if you have feeding concerns, seek advice from a feeding therapist (either an OT or SLP) even if a doctor says not to worry.  Third, the parent is not to blame for the feeding issue.  EVER."


What’s the biggest misconception about what you do for a living?  "That speech therapists just work on lisps."


Have you forgiven the Kiddo for losing one of his baby teeth in your hands?  "This was most definitely one of my most unforgettable career moments to date.  And yes, how could I not?  He's such a charmer."

Dammit, I forgot to ask her what kind of adult beverage she had that night after work.  I bet she told her husband about that one.  ;-) I can still see her face.  Holding a little plastic bag with his tooth in it.  Oh man, I owe you a six pack with a side of fries for that one Miss Kelly.  

But ain't she cool AF?  A lot of times, I can get frustrated with our lives. Usually within minutes though, I remember we have this amazing squad of people around us and she's one of them. So I hope you enjoyed this little insight with a Speech Therapist and you didn't even have to cough up a co pay.  

Sidenote, her husband makes the most bangin' BBQ sauce. How good is it? Well, it's the only BBQ sauce Kiddo will eat.  So that says it all. ;-) 

Fun fact. Miss Kelly and my mom have a little rivalry going on who can make the Kiddo try new foods.  Miss Kelly was the woman that got Irish Soda Bread past his lips though.  I think that still stings Kiddo's Granny. Mainly because any new foods he's eaten since my mom is quick to tell me "You text Miss Kelly and tell her what I got him to eat!" 





Thursday, December 28, 2017

Your kid has autism. Get over it.

Miracle Mineral Solution or the MMS protocol.  Ever hear of it? No? Need a refresher? Allow me. It's Chlorine Dioxide, an industrial bleach. High oral doses of this bleach can cause nausea, vomiting, diarrhea, severe dehydration and other life threatening conditions like kidney, liver and or heart failure.  

It's often given to autistic people, mostly children to "cure them".

And if that's not horrible enough of an idea for you, it's usually done as an enema. Which destroys the linings of the intestines and parents proudly display pictures of bloody discharge on message boards and private Facebook groups because they believe they are ridding their child of parasites and autism. 

Go ahead. I'll say it with you.  WHAT. THE. FUCK. 

I'm a bit of an autism old timer by this point. I've been hearing about this treatment for a while. As a matter of self preservation, I try to ignore/avoid this topic and other ones like it because ain't nobody got time for that. If it looks like a duck and quacks like a duck than it's a freaking quack doctor duck. Or something. You know where I'm going with this because I'm kind of sure that the majority of the people that follow my little old blog are rational and thinking people.  Chemicals they would use to clean their bathrooms are not things they are interested in having their child ingest. I mean, it's hard enough to get my Kiddo to eat a vegetable and I'm also not BAT CRAP CRAZY. 

This past week I've been binging on podcasts on the psychology of cults. (Yeah, it's safe to say I have eclectic interests.) Anyway, as I was folding laundry I heard a statement in regards to Scientology that made me lose my mind on this topic.  That not only are they telling parents to do this to their autistic kids, they should be giving it to their neurotypical children as well to prevent autism from possibly developing and that's when I let out a string of curse words that would make a sailor on shore leave blush. 

A reenactment of me hearing it. It totally messed up my good hair day too. 


Cause it's not enough to abuse and possibly kill your autistic kids. Let's get the other ones too while you're at it because you are THAT afraid of autism.  (Fun fact. Scientology doesn't recognize autism as it falls under the area of mental health and that doesn't exist in their world and yet, they have no problem selling this MMS junk as the cure to autism. You know, the thing that doesn't exist.  Ummm, okay then.) 

You want to know why there are so many autistic adults online that seem very angry at parents?  It's because of stuff like this and frankly, can you blame them? Like seriously, imagine you are autistic and you first stumble across a post about this. How these parents are willing to take the risk that their kids will have organ failure because autism is just too scary and needs to go away.  Or, imagine being an autistic adult that somehow survived this treatment.  It can't even wrap my mind around that.

The people that do this are the reason we can't have nice things and it's time we had a "Come to Jesus" conversation.

Your child has autism. It's not what you planned but hey, your kids didn't plan on having parents that would consider bleach enemas as a sound medical choice either. Looks like you're both disappointed but how about accepting what life gave you so you BOTH can be happy and move forward.  How about that? Making your kid happy.  I think that's what all parents can agree on.  We want them happy and we want them safe.  Having your child ingest bleach, NOT SAFE.

It's quiet possible that even if your child wasn't autistic, that they might develop and grow their own set of ideas, opinions, and beliefs that are completely different than your own or what you raised them with.  Despite sending me to Catholic school all my life, my butt isn't in a pew on Sunday.  Guess what? My mom didn't try to give me bible enema.

Your kid might be a Democrat to your registered Republican.  Your kid might be gay. Your kid might realize that they do not identify with the gender they were assigned to at birth.  Your kid might marry and then divorce even if you think that marriage is forever.  Your kid might not want to make you a grandparent. Your kid might doing something really evil like root for the Mets when you're a die hard Yankee fan.

Your kid has autism and that doesn't change a damn thing about them. It just explains their neurology.  That's it.  Yes, autism has challenging aspects to it. I won't sugar coat it. Some of these can be down right hard to live with but this "miracle solution" bullshite? This has to stop.  This is abuse. Plain and simple.

Sometimes the only cure needed here is a change of attitude.  Your kid has autism. Accept this and them.

I accept the fact I have to give the Kiddo no less than 50 head scratches and squeezes a day. 





Wednesday, December 13, 2017

Mixed feelings.

It's okay to resent some of this stuff.  Autism.  There, I said it.  You are allowed to be upset by some of the things that autism does.  Yes, you can.  You are not a monster for acknowledging how you feel. You can be mad at it.  Some parts of autism can be not only hard to understand but very hard to live with.  It's what you do with those feelings that counts.

 I would never dismiss a feeling in a person.  That's their right to feel it. Sometimes you're stuck in it for a few moments and sometimes, a few months.  One feeling I'm sick of feeling is those who judge us and our feelings about autism.

Guess what my dears? I can be mad about some of this shit AND still be a good mom.  I can resent the crippling anxiety and sensory issues AND still celebrate the fact that my Kiddo is awesome for his unique way of looking at the world.  Humans are complex creatures.  We can have more than one feeling going on at one time. It's possible.  At the end of the day, when you are the one being kicked, grabbed and screamed at by him, when you are the one cleaning him up after he barfs from anxiety again, when you are the one picking up the pieces for the hundred time of his latest meltdown, then you get to have a say about my parenting.  Till then, go be perfect someplace else.

I can still take issue with the folks that left my life because autism came along in ours and made things complicated.  Likewise, because of autism there are now literally thousands of wonderful people in our lives that wouldn't have been otherwise. I mean, it's kind of nuts knowing that.  I thought I had good people around us till they weren't around anymore and although that doesn't happen as much, it still happens as his needs change.  But pick you over my Kiddo?  Bitch, please and BYE.

Autism brings a lot of mixed feelings.  All the freaking time. I struggle with the daily. I'm trying my best and I even know that sometimes my best will still fail him. I'm not going to deny when I have those mixed feelings though.  Even though I resent having them.

What can I say?  This shit is complicated. ;-)

Kiddo, It's 106 miles to Chicago, we got a full tank of gas, a side of fries, it's dark, and we're wearing sunglasses. Despite it all, there's no other person on earth I'd rather be on this road trip with.  





Thursday, November 16, 2017

Precious.


"The things your think are precious 

I just can't understand."

Reelin' in the Years by Steely Dan

We've been dealing with an anxiety upswing for a few weeks now.  It's gone from being the current crisis to the new normal. I can't say I'm too happy about that. What else can I do though? It's not like I can just ask or order Kiddo to switch it off.  How much do you calm down when someone says to you "Calm down!"? 

I'm constantly on edge with the Kiddo and how he is feeling.  He can go from happy and giggling to full blow anxiety pacing in under ten seconds.  I'm finding it hard to keep up momentum. Always having to be "on" is exhausting. It's like playing one of those arcade games of "Whack A Mole". Squash one problem, another one pops up. It never ends. 

The only thing that we had going for us was that at school, he was fine.  They really didn't know what we were talking about with the panic attacks.  I was grateful for it. 

Till yesterday. 

Wednesdays are already traditionally tough in the House of Fry.  For reasons we do not fully understand. I've dubbed them "WTF Wednesdays" long ago.  So my husband is away overnight for a convention for work.  Then add the Kiddo's teacher, who he loves, is out for the week.  Yesterday was also her birthday and her not being at school so he could sing "Happy Birthday" was the tipping point for the Kiddo.  HE LOST HIS SHIT.  There is no other way to describe it.  That was just too much change for the Kiddo.  Dad being away and not being able to wish his teacher a happy birthday switched on the "HULK SMASH" feature of his brain.  Did you know that desks were aerodynamic? Let's just say Kiddo did some aggressive rearranging of the furniture of the classroom.  

His school being his school didn't call me though to tell me to come get him. They dealt with it but they also knew that this wasn't him and called me to say he had a "rough day." (And I have to love them for calling it that.  Just a rough day when you throw a desk or two. No big deal. Makes you wonder what the Oval office looks like right about now with all those rough days there.)   

It was clear talking to them that they too have seen what Kiddo is clinging to the most lately and that is his schedule. Any changes without his expressed written permission, well, it ain't gonna be pretty.  This is the one thing lately that I can't get why it's become so rigid with him lately.  I mean, I'm all for routines.  I love them too.  Kiddo was able in the past to be more flexible with sudden changes.  (Like someone being absent or adding a stop to a list of errand running.)  Now, if it's not written down in his notebook which lives on our kitchen table, it does not exist in his world.  He has to have things in their order and he looks so damn content checking them off as he does them.  It's so precious to him and I can get that even though I kind of still don't. (Does that make sense? You know what I mean.) 

There are some good things with this notebook.  He's written out his whole morning routine that I no longer have to say a word to him to do it.  He's getting it done.  So, that's a nice trade off.  Of course, it comes with him getting up earlier and earlier lately so he can run out to his notebook to check off "wake up" off his schedule every morning.  Earlier wake ups lead to more free time in the morning which would be fine if he wasn't tapping his foot waiting for the world to hurry up so he can check off the next thing on his schedule.  I won't lie.  This behavior of wanting to rush through everything is driving me bat crap crazy and let's face it, I didn't have far to go.

Knock wood, the new normal of barfing all the time has been better but he still has moments of it.  Even though today's schedule was a school trip to a mini golf center, he was looking a little sweaty. A little off.  I gave him an anti nausea medication just to be on the safe side so I wouldn't get the phone call of shame from the school nurse.  He settled and seems to have had a good day.

My pal "A" always says "we live in moments" and that's pretty much all we can do right now. If the moment is good, enjoy it. I know how quickly it can change.  The good ones are precious and I hang on tight to them. 





Thursday, November 2, 2017

Dear Anxiety

Fuck you.  Seriously, go fuck yourself with a rusty shovel.  I am so fucking sick of you and what you do this family and more importantly, to my Kiddo.

It's a fact that you are very contagious and I'd really like to send you packing for good.  All it takes is for Kiddo to be anxious and then everyone else in this house is as well. I had no idea how easy you could spread in a family.  I think you run through a house faster than rotavirus.

It's just not fair that my Kiddo's life is ruled by you and no matter what we do to counteract it, you just keep chipping away at him and at us.  Therapy, medication, diets and all matter of intervention.  You never go away.  You merely quiet down and recharge for the next round when you will hold my Kiddo hostage once again.

And I am so God damn tired of running interference with you. As soon as I see Kiddo start to pace and script like a mofo, I know you're making yourself known. He's trying hard to battle you with the coping skills that he has learned.  Some days you stay at bay but more often than not, you win.  Then you take that win and rub it in our faces.

Plus, you've added a new weapon to your arsenal.  Now you get him freaking out so badly that it effects his whole body. He's now throwing up/gagging because of you.  I can't tell you what a freaking delight that's been.  Every other day, dealing with vomit and cleaning him up.  I'm all about a "Better out than in." way of thinking but this is getting ridiculous and kind of gross. I've gone from researching what mystery virus this could be to "Okay, go throw up. Get it over with.". Yeah, I'm really winning the "Mother of the year" award over here. I'll be sure to collect it once I've done this 47th load of laundry you help create.

My Kiddo just wants to be himself. I just want him to be himself.  I am so tired of living on edge because of you.  You make our lives miserable. Worse yet, you take up so much of our time and energy that we start to forget the good things we have going on.  I don't want to be that miserable person.  I don't want to dwell in the negative but for Christ sake, you make it hard not to be that way.

I've come to terms long ago that our life would never be typical but it just seems like each passing year, a new level of "WTF" gets added to the mix. "Oh, you just started to feel slightly confident in your parenting a special needs child?  Let's LEVEL UP, BITCH!"

How much more are you going to take from him? How much more are you going to demand?  Cause I'm done trying to negotiate with you. I tired of seeing you drag us down to your level. I'm tired of what this has done to my Kiddo and to my marriage.  I'd tell you go to go fuck off forever but no matter how many times I said it, I know you won't go.

Can I just say you are one of asshole of a roommate? I don't know why I am asking you if I can. You certainly didn't ask if you could stay and yet you do.  If you're not even gonna chip in on the rent or the medication we all have to take because of you, GET OUT!  Seeing at Daylight Saving Time AND a full moon is headed our way this weekend, hurry up and pack.

Sincerely with no love,
Mama Fry




13 years we've been on this Island of Sodor and even my dog can't believe it.


Sunday, October 15, 2017

ALL ABOARD!!!!!!!

I'm feeling like I hopped on board the Crazy Train. Let me tell you why.


We, the special needs parenting community are not saints. We are not special people picked by the Lord to have special children.  We are no better than any other mom or dad that is doing their thing.  Even the phrase "I don't know how you do it." doesn't really apply to us because on most days we're not sure how we are doing it either.  You just do it because it's your kid and of course you would just do what needs to get done.  We aren't perfect.  We screw it up. A lot. We disappoint our kids and ourselves.  We try again.

I guess what I am saying is we really are just like those neurotypical parents.  There is really no difference between us at all. What is different are the standards to which we seem to be held.  Ones that are often created by those who do not have a special needs child and THAT is when we have problems.

This different standard of parenting needs to end because personally, it's making me bat crap crazy and I'm really tired of feeling like I'm always the crazy one.  To paraphrase the great Ozzy Osbourne's song "Crazy Train", "Crazy, I just cannot bear. I'm living with something that just isn't fair."  Because  autism is many times often unfair with what it deals a person who has it and the loved ones around them.  There are many gifts but I'd be lying if I said "Oh golly gee. It's perfect. No complaints!!! All good in the Autism hood, yo!"

I'm tired of all of us getting shoved into this sainted parent box because it makes no sense.  While some will be more than willing to polish our halo, often those same folks can be the ones heaping on judgment for stuff that they simply cannot begin to understand.  You can't tell me I am both a amazing special needs parent who was just destined to be the Kiddo's mom while at the same time asking me "Why isn't he on a special diet?  You should really try the diet I read about once in a an old People magazine while I was at the doctor's office. You know about the diet, right?" and be sighing and rolling your eyes at me because I won't put my Kiddo on a diet that didn't work for us in the first place.

Do folks realize the crazy mixed messages we get when the same folks that stopped inviting our kids to play dates and birthday parties are the same ones telling us "Oh my god! Have you watched Atypical?!?! Your blog was in it!"  (Yes, I did. Yes, I knew about it. Yes, I have a screen shot of it as my laptop screen saver.)  It's just like my family is some sort of holiday decoration you all only take out when you want to celebrate all things Quirkymas and then promptly put away when you are done.

I guess I'm just feeling extra sort of, mmmmm, I don't know, a walking autism info kiosk lately. I know part of that is my own doing. Hell, look what I blog and write about for a living. I get it.  I made part of that box I am in.  I guess it's just lately I am just so tired of the standard we seem to be held.  Especially when we weren't the ones that set it.

Well, this blog is all over the place. I guess I'll go back to listening to some music with my ear buds in while Kiddo watches "The Polar Express" again.   And yes, he does watch it every night and yes, it would be a BIG deal if he didn't and no, it's not hurting anyone if he does.  So save it if you are about to comment on our bedtime standard around here. ;-)


Living with the Kiddo is like living with Ozzy Osbourne. They're both loud.  They're both musical. They both ROCK! 




Thursday, September 28, 2017

Toilet Talk

There's no fluffy smooth intro here.  Let's just get down to it. My Kiddo has to pee and sometimes when I am out and about with him, I have to pee too.

Now when he was little, no one batted an eye lash at me bringing him into the ladies room with me.  In fact in most cases he was one of many little boys who were in there with their moms.  I didn't and still don't care when I am in ladies room when I see a little boy in there. I'm thinking of my bladder, not some other kid's wiener.

The thing that has happened is Kiddo has started to grow up. I know!  How rude of him to get taller, bigger, and more adult looking by the minute.  I don't remember telling him he could do that at all. I still want him to be the little tot in a one piece romper stomping around like a Godzilla in those chunky white toddler shoes who would run away yelling like some pint size Braveheart going off into battle.  Usually after someone would turn on one of those loud as feck hand dryers of doom.

Alas, it is not to be.  Instead I have a 5'4 lanky teenager with hair legs and a rapidly deepening man voice following behind me in many a bathroom because why?

AIN'T NO WAY I AM SENDING HIM TO MOST BATHROOMS ALONE! In fact, I have started to map out my errands based on places I know that have single stall restrooms because I can send him into those easily and I know he'll be fine.  Plus, for me, it's not just sending him into a men's room by himself that I have to worry about. I have to go too. So you want me to run into one restroom while he's in another and hope like Hell I can get in and out fast enough so he's not alone by himself because he finished first because despite it being 2017, women's restrooms will always have the longer ass wait! (Seriously ladies. Why is that?  What are we doing in there that's taking so long?  Oh! I know! It's because we're having to bring in our kids with us.)

In certain public locations, he's coming in with me and if you are the general public, you have two choices.  You can either deal with it OR you can help us out by telling businesses to make more "family/gender neutral bathrooms".  Because your bladder is not more important than my Kiddo's. Or mine.  So until we have some more family bathrooms, he coming in with me.  My Kiddo has autism, is intellectual disabled and has limited communication.  There is a reason why I have to be a Smother Mother. It's to keep him safe. If you are concerned he may see you NOT wash your hands, that's on you.

And you know what? I kind of hate that I have to do that too. He's 13.  He doesn't want to go in with me. I know it and yes, I can see women in there doing double takes when he's walking in with me.  Trust me, I will make sure he puts the seat back down though.  I'm trying to raise that boy right.

After all these years, I don't give a flying crap anymore if you give me and my Kiddo a look in the bathroom. I will be the first one to tell you "Take a picture. It'll last longer."  Seriously though, what would you rather me do?  Never leave the house? Never go to pee? Sorry, you're not worth a UTI.

More of these, less of judgement.