It’s April 2nd. Autism “Awareness” up the wazoo. So here’s mine…

I posted the following in a rather large autism parent support group on FB and on my FB page for Eluding Atrophy:

Happy Autism Awareness/Acceptance Day!!!

Whatever color you use, blue, gold, red, or symbol, puzzle pieces or the rainbow infinity…
Let’s remember what this is about, okay? Autism. What that means, what it REALLY is, those affected by it and actually are Autistic, what they need to live a functional life. Stuff like that.
Let’s all, whatever friggin color we use, promote not only awareness (for those who have no idea what it is) but also acceptance. Auties want to be accepted, included, and accommodated where needed to live functional lives. Auties can contribute to society just like any other person, with the right services. While we fight for services for our kids, keep in mind that these kids will one day be autistic adults and will, more likely, still need some kind of help, so let’s try to look towards the future and find a way for them to have those things when they reach adulthood. So many of us have gone without, those of us on the spectrum that are adults today, and this is why you will see so many passionate auties speaking out.
You will see many Autistics speaking out against blue and the puzzle piece. Let them. This month is about THEM after all, isnt it? Yes it is about your little ones too, it is about my little ones, but it is also about the Auties that came before them. Accept that they have a voice and can speak for themselves, and that what they say might not be something you agree with but they have a right to speak about their own experiences. Our kids will one day be older and want to speak for themselves, would we silence them just because we don’t like what they have to say? I wouldn’t.
Promote your color, but let others promote theirs as well. I say this to all.
Fellow Autistics, as hard as it can be for some of us, the blue wont go away over night. Advocate. Advocate hard, but try to keep in mind that change is hard for all of us, some more than others. And a mindset cannot be changed right now, it takes time. Maybe one day a compromise can be made, maybe a real change will happen. But until then I will promote the color and symbol I feel is appropriate (gold and rainbow infinity), and if someone objects they can but I dont care, because I am autistic and I will promote my own neurotype the way I see fit.
Non Autistics, all I ask is that we ALL stop the sharing of misinformation. Let’s promote love and acceptance, let the world know that autism is not a disease and that our kids are not broken.
Go blue, go gold, go red, go orange for all I care at this point.
Ultimately it is about getting the right services for those who actually are autistic, and to stop the spread of misinformation and dehumanizing those with the disorder.

These past few days leading up to the month of April have been rocky, at best, in online Autism groups. Autistic adults have been speaking out against Autism $peaks and it’s been met with backlash from some parents that disagree with their view point.  Maybe… that post will be taken a bit better. I do NOT support AS, don’t get me wrong, and I do not agree with light it up blue or the puzzle piece. But I just felt like maybe trying to find a middle ground might be good to do, in the long run, if anything it might get a few people to think and ask  but why don’t they light it up blue?? etc.  Because clearly, if they know the harm AS does, surely they would be appalled by that as much as we are? Right?

Autistics are speaking up and for themselves, and it seems to be making some non autistic parents of asd kids upset.. Which is incredibly hypocritical if you consider that they are supposed to be advocating for the acceptance of their own child. These children will one day be adults, autistic adults, and yet they try to silence the very people that are in the same demographic…  WHY?   Why the fuck are they doing that? I just cannot wrap my mind around it.  So I take a step back and look. I see blogs by parents writing about their kids, I see posts in groups, etc, which many tend to have this “woe is me” thing going on. This isn’t to say that ALL are doing this, of course not. I know some wicked cool non autistics.  The point being that there are some or many that are using their child’s autism for sympathy or likes or views.  They even go so far as to post the most intimate of details and I cringe at the thought of my parents posting something about me in that way. I would NEVER go that far when it comes to my kids. I am not their voice. I am my own voice. When mine are able to speak for themselves they will do so, and I will do my best to help them find their voice, but I will in no fucking way attempt to speak for them. Ever. This seems to be a concept that is hard for many to grasp, letting the autistics speak for themselves. But what about the non verbals? I have to speak for my child because they CAN’T speak for themselves.  Not necessarily. There are nonverbal autistics out there with blogs. They probably can find their voice if you help them find it.   When it comes to schools and IEP’s and doctors etc, yes you speak for them there, I get that. But this isn’t what I’m referring to. I’m referring to the so many that will tell others what Autism is when they have no fucking clue what it really is, because they have only witnessed it as a carer.  Then when those who actually are autistic try to speak up, those very same people that claim to be fighting for services and acceptance of their own children will try to silence those of us who want to speak for ourselves. Something is VERY wrong with this.

This martyrdom of carers and parents has led me to believe that Autism “Awareness” month isn’t even about us anymore, if it ever was, but rather about the parents and how hard it is to raise someone on the spectrum, the struggles and sacrifices. Most of the message of “light it up blue” is negative. So much misinformation is still being spread about Autism. It is made to look like this horrible thing, worse than death.  Autism destroys homes, marriages, lives, etc.  This is what we (those who advocate against AS and for ourselves) are trying to combat. Fight the spread of misinformation, to get our voices heard, to tell you (the non autistic) what autism is REALLY like.  I am hoping that my post above will help to sort of “bridge the gap” that is growing so vast between the Autistic Adults and non Autistic parents of Autistic kids. Maybe it will, maybe it wont. But I have to try.

I want to say to those who continuously argue the use of light it up blue, those who say that it is fine because it is what they feel is appropriate and they like it:  Nobody fucking asked us what color or symbol WE wanted.  But many of us are telling you now, that we DON’T light it up blue, we DON’T like the puzzle piece and we are explaining WHY. Autistics are speaking out, why wont you listen?

 

For more info on the Autistic perspective (just a few links, there are so much more, and most of these have links to even more!):

Ask An Autistic- What’s wrong with Autism Speaks? 

30 Days of Autism

Emma’s Hope Book- What’s wrong with Autism Speaks?

Autistic Hoya- So High Functioning

Autism Women’s Network- Your Autism Awareness Has Failed

Non-Speaking Autistic Speaking 

 

 

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Online Bickering about Autism

I am Autistic.  That is not up for debate.  But for some reason, very often, actually, it seems to become the topic of discussion when I do bring it up while trying to “voice” an experience I may have had that relates to a particular online post.  I’ve been venturing out, more and more, out of Autism groups and posting on my own personal page, and my posts are being shared and so the audience grows.  This is supposed to be a good thing. My hope is that my experiences of growing up without a diagnosis (I have one now) might shed some light on some things for others.  I never claim to speak for everyone on the spectrum, I only talk about myself. But, I generalize a lot, and that gets misunderstood.

I found this meme and posted it because I relate to much of it.

notsocommontraits

It was shared at least 30 times… and I think that being shared as much as it was it brought the pink lady to my post.  I covered her name and photo in [pussy] pink while my name is covered in black, like my soul

 

Admittedly, I had zero patience from the beginning, and I know that I could have responded differently, but as the “conversation” progressed I realized that it wouldn’t have mattered. She had her mind made up and was looking for a fight. After my yawn comment her response was something along the lines of blah blah blah, under your skin, blah blah blah I’m an idiot. — I’m paraphrasing. And then I was blocked.  The fact that she called Autism a “mental disease” shows the lack of knowledge in her case, regardless of her brother having autism –If she even has a brother.  I came to the conclusion that this particular individual has lived with (maybe) someone on the spectrum and seen it, but has never taken the time to actually see things from their point of view.  And so when her name went black I decided to just delete the comments and be done with it.  Thing is, this will continue, I know that, and I guess I was just surprised it happened so soon on my personal profile. Granted, it was a public post- the point is to get it out there- but it took me by surprise nonetheless. And I know this happens a lot, to many other Autistics that advocate online. It happens to me in groups all the time. But this is something of a noteworthy experience, in my opinion, because it means my posts are getting around.  This could be good, all in all, despite the negativity that ensues.  And I wanted to document this momentous occasion, in the fact that it has found it’s way to my posts. Irritating, though, as it may be. It’s still kinda cool.

I wont let things like this deter me from what I am trying to do. I am at the beginning of my journey, so to speak. I now have a diagnosis, the pieces are finally coming together, and my childhood makes more sense.  Even though I suspected Autism for several years it hasn’t exactly hit home until recently, when I received my diagnosis, a sort of recognition or validation, perhaps?  I have been meaning to write about it… my thoughts on the transition, as it were.  But instead I dove headfirst into the cesspool that is Online Autism Groups and have been trying to find my way back to the surface. It is pretty easy to get caught up in the online drama.  And over the past year I have learned a lot and am hoping to use these lessons to my advantage in polishing my skills as a writer and perhaps as I go along- helping one or two people along the way by posting my own experiences.  I do so hope that you will accompany me on this journey.

 

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New Year’s Eve in an ASD Household

New Year’s Eve.  Fireworks.  Parties. Celebration.  Noise. Lights. Boom! Meltdowns.

The holidays can be especially hard on those with ASD (Autism Spectrum Disorder).  The change in routine, the chaos that is preparing for the holidays, the family gatherings, and all the distractions and possible meltdown triggers.  Just finishing up the Christmas dinners and presents and then right after comes New Year’s Eve.

I think it really depends on where you live, in cities there will probably be more fireworks…  In Iceland, we go ALL OUT when it comes to New Year’s Eve.  Just as midnight is about to roll in the sky lights up with bursts of green and blue and red and yellow, along with the crashing booming sounds that follow.  It is a wonderful sight, to be sure, but for the little ones who are on the spectrum it can be the most terrifying thing, ever.  I live in the city, and every frigging house, it seems, has their own fireworks show.

I have a love/hate relationship with fireworks. I love the way they look from afar, I HATE the way they sound and come at me if I’m close enough..  Then when all are going berzerk in the night sky, it is almost deafening.  A firework display meant for the public is also both incredibly beautiful but  terrifying at the same time.  This year we chose a spot that was far enough away to watch but close enough to get the intensity of it all.  It seemed to be a perfect spot, and I never felt the fight or flight kick in. My youngest, on the other hand, seemed to be very unsure. She wore headphones to block out the sound (somewhat) but she inched away with every blast. I had to keep a good grip on her, I was afraid that she would run off. She is one to run off on occasion with no sense of danger, right into the road if I don’t have a good grip.  I’m thinking now that my focus on the little one kept me distracted from any possible issues I might have had with the display.  But it went well, regardless. My oldest (ten year old) was incredibly excited and yelled “Wow awesome! Oh my god!” at every single one.  It seems like only yesterday that he was the one holding onto me for dear life during one of these shows.  But now it is his younger sister (nearly four years old) that I have to make accommodations for.  She is more sensitive to sound than he ever was.  Even with the headphones she complained about the noise.  The public display wasn’t that hard for us. But when we got home, that is quite different. While we were firing our own it wasn’t that hard, but eventually she said “that’s enough”.  It was closer so I’m thinking maybe that was more intense, I’m not entirely sure.

Bedtime.  I put the little lady down at around eleven… it took a while to shoot off all the fireworks we had, with breaks in between.  And she was so excited and over tired that I thought she would never go to sleep. Just as her eyelids were drooping, midnight was rolling around and the chaos that is New Year’s Eve here in Iceland ensued.  If you google it, you can see pictures of an amazing display of fireworks over the capital.  It is a sight to behold, seriously.  But if you are trying to get an over tired ASD nearly four year old to sleep at the time that all of these go off… it is an entirely different story.  I got lucky this time.  She was SO tired that even though there seemed to be a war going on outside she just drifted off as if we were out in the middle of nowhere, somewhere in nature that was peaceful and serene.  And maybe because she fell asleep with all that noise it never woke her up.  Me, on the other hand, I was so on edge that as soon as I saw her go to dream land I jumped up and had to go look.  It wasn’t even excitement for seeing the pretty stuff in the sky but rather the constant banging and boom and explosions had my nerves on edge. Some were so loud that I jumped, startled, like a cat realizing there is a cucumber in it’s space that wasn’t there before.. Seriously why do people do that to their cats?  Anyway, all things considered, it went really really well for us this year.

Last year was really really hard. So I took that into consideration and made the necessary accommodations and opted out of any sort of party that might make it more difficult for the little ones.  We kept it at home, except for the quick stop at a public fireworks display.  We had noise cancelling headphones and gave the kids a rest when needed.  We also made it fun, messing with each other and joking around. We had a nice dinner (which the littlest didn’t eat, she had toast).  This New Year’s Eve was pretty laid back, all things considered, but most important of all, the kids had fun and we were meltdown free.  The littlest seems to be a bit sensitive today, too much of a good thing last night I guess.

In closing, to any new Autism parents that might be having a hard time with the holidays:  It gets better.  It really does.  You learn through experience, what works and what doesn’t.  Even if these past holidays were really tough, you can use that as a learning tool, and perhaps make new and better preparations for next time.   And cut yourselves some slack also, because you are doing the best you can!  I say this because I have seen in some online groups how hard the holidays were for many Autism parents, especially those who are newer to their little one’s diagnosis. As hard as the holidays were on these parents, they were just as, if not more, hard on the little ones.  So do try to keep that in mind for next time.  You are doing great and don’t give up.  🙂

 

 

 

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Christmas and Food Aversion

The Holidays, Christmas, or whatever you want to call it… This is a time for celebration, a time to love and have fun with family and deal with all the glory that is Autism food aversion.  Fun fun.

Sitting down at your dinner table and putting that Christmas meal in front of the pesky picky eater and begging them to eat. You try to bargain, you try bribing, you try the old “if you don’t eat, you don’t get ice cream,” or whatever.  You name it, Autism parents have tried it.  And believe it or not, the picky eating isn’t even the worst part of the scenario.  The worst part is when the family members of yours, who don’t have Autistic kids (or any kids, for that matter) start giving you advice on what you should be doing instead. I’m sure most of you have heard some form of “if they are really hungry they would eat it…” or “it’s because you just let them have what they want most of the time” or the ever popular “they are being a brat,” or “they are controlling you..” As if any advice they are going to give hasn’t already crossed your mind at one time or another, before you ever did any research to learn what Autism really is.

So let’s start with what food aversion really is.  Using the term “picky” is not accurate, in my opinion.  Picky implies that they could eat it and simply choose not to.  When it is Autism related, it has nothing to do with them just being picky.  Food aversion for those on the spectrum, more often than not, has to do with sensory issues. Sensory meaning texture, smell, taste, look, etc.  And when it does not have to do with sensory issues, one must consider a large list of other things… such as are they having a rough day, are they close to a meltdown, are they stressed in any way that could lead to a meltdown… something like that.  It is NEVER simple when it comes to Autism, at least not to the untrained eye.  And then there is also the part where once they decide to not eat… there isn’t a thing in the world that can change their mind.  Getting an ASD kiddo out of a specific mindset is incredibly difficult. And all of that aside, there is also the part where many on the spectrum think they are not hungry when they actually are, or don’t know they are hungry until they are STARVING, or simply just don’t get hungry for long periods of time.  Like I said, it’s friggin complicated.

I’m going to go ahead and add what Autism really is, just for some background for those who have no idea. Autism is not bad behavior, it is not something a child can control. An Autistic individual has a differently wired brain than someone who is non Autistic. This means that information that comes through to the brain is in many cases unfiltered or over filtered, depending on the individual, and this accounts for overly sensitivities to things like sound, lights texture, (or under-sensitivity) and that is only a small part of it. There are other things, social communication problems and such, but that is nothing to do with this particular post. To learn more about Autism, click here.

In my own situation, I have a nearly four year old Autistic girl, whom I have lovingly dubbed The Destructo Beast.  She is incredibly “picky”.  Many Autism parents know how difficult it can be. This young lady will only eat a few things, which I can usually count on one hand, but also, it changes, what she eats one day she wont eat the next. So it isn’t like there is anything set as backup just in case she doesn’t eat. It is ALWAYS trial and error. She also has some pretty severe sensory issues, especially to sound and texture (when it comes to food and clothing), and I suspect there is a bit of OCD in there somewhere because food cannot EVER touch or she wont eat… even if she likes what is presented to her.

With that being said, I’m going to address some of the common things people say, when they have no idea what food aversion is.

“If she was really hungry she would eat it.” — No. Just no.  An ASD individual would rather go hungry than eat sensory offensive food.  I guess the only way I can explain this is if someone put the grossest thing in front of you, on a plate, and told you to eat it.  And this something gross is so disgusting that you literally cannot swallow it, because it is horrid in texture, smell, and looks awful all at once.  A plate of slimy worms or dog shit. Could you eat that? Even if you were really hungry, would you eat that? I highly doubt it.

“She wont eat now because you just let her have whatever she wants all the time.”  — Saying that to an Autism parent is pretty much a slap in the face.  For one, you are making a judgment based on one moment that you happen to be privy to.  For two, you have NO IDEA what it is like at home. And for three, a parent of an Autistic child HAS tried just about EVERYTHING to get their child to eat food that is good for them. Do you seriously think that we are such pushovers that don’t give a crap about our kids so we just give them what they want to make it easier on ourselves? If you think that you don’t know us at all. It is a constant BATTLE to try to get our kids to eat. And after we try and try again, we do get to the point where we decide to pick our battles. But that does not mean that we have given up and given in, it is simply that we are trying subtler approaches, that take time and patience, and results don’t show over night.  For me in particular, and I’m guessing this is probably common, during the holidays the last thing we want to do is fuss and fight with our kids, especially at someone else’s house, so for THEIR (the child and the person who owns the house we are visiting) sake, not our own, we let them slide this once.

“She is trying to control you.” — No, at most, they are trying to control their own situation, by NOT eating something that is sensory offensive. OR they have had a full day of sensory input and have reached their limit and sometimes no food will be good then… because THEN they are EXTRA sensitive.

There are many, many more.  The child is not a brat when trying to avoid eating something that is uncomfortable, or even painful, to eat.  As someone who has some pretty heavy food aversions, even as an adult, I can understand how difficult it is for that child… the one whom you might call a brat and/or judge that parent.

If you have an autistic individual in your family, or even know someone else who does, I urge you to do your research. LEARN about Autism, please, for the sake of those on the spectrum and their caregivers. And do the rest of us a favor and STOP comparing Autistic kids to non Autistic kids. The two are non-comparable.   It IS up to the non Autistic to learn about Autism, it is up to YOU to learn to accept Autistic individuals for who they are, and not try to mold them into something they may never be. That does not mean they are not capable, it means that accommodations need to be made, tailored to the individual to help them learn, grow, and succeed.

And if you are ever in doubt, ASK an Autistic or a parent of an Autistic. We are more than happy to explain and help.

 

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Gifts from Kids to Mom

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My awesome kids made their gifts this year.  From the ten year old ASD ADHD boy I received a stuffed green … uh… thing. Haha. I love it though. It is weird looking and very unique.  From the nearly four year old ASD girl I received a keepsake of her hand.  I am one happy mom, you guys.

Merry Christmas and Happy New year from this ASD Family to yours.

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Our Christmas Story

Here we do the opening presents on Christmas Eve. Basically it goes as follows– A nice dinner with large family and then opening presents and then ice cream for everyone. It ends up with a CRAP LOAD of prezzies under the tree. The next day, Christmas day, is a dinner with immediate family only (in my case me, the two ASD kiddos, my brothers and sis in law). Then on the 26th, which we call the second Xmas, is more dinner, not really formal but many choose to have it formal. Anyway, so it sounds simple enough I guess. But when you throw ASD in the mix it becomes rather complicated.
So our Xmas dinner went okay I guess. Me and the kids went to my brother’s house for dinner. The kids watched as members of our family and my sis in laws family showed up dropping presents under the tree and their excitement grew. The ONLY thing they care about is the presents. As with most kids. Tunnel vision with these two. The entire dinner my boy was anxious to open the gifts, and asked about it every few minutes. My three year old refused to eat, she ran from chair to chair hanging off the back.. tried to climb in her brothers lap and a fight ensued. I kept having to drag her off the chairs and putting her on the couch, why bother trying to get her to eat once she has made up her mind, it wasnt going to happen. So I gave her my phone to watch videos, which I had to get up every couple of minutes to change it because she wasnt happy with whatever she was watching. I still managed to over eat, not even sure how, since I barely sat at the table haha. So then the kids had to wait, omg the dreaded wait, for everyone to finish dinner before opening gifts. I made it a point to not make them have any expectations as to what they were going to receive this year… As you know with these kids it is rather hard to please them sometimes haha. When it came time to open gifts they were made to sit patiently (or something like that) on the couch as one gift was handed to them to open, then they had to watch others open some, and then back to them. My girl was so excited she kept trying to open everyone’s presents. I think for her just opening stuff was fun. Even when she received clothes she was so happy to get them she wanted to try them all on. My son’s favorite was the toy car that made noise that I got for him. My girl got two baby dolls and a bunch of stuffed animals and clothes. I learned a long time ago that a nice trick is to separate even outfits and wrap separately to have them have more things to open so we can drag it on a bit while others open theirs as well. I got some pretty cool gifts, hand made things from the kids, pajamas that say  NEED COFFEE NOW, two books, a gift card to use anywhere, another gift card for free eyebrow magic, lol, and my younger brother got me a gag gift of stress balls shaped like testicles. Perfect holiday.
This Xmas has been the best so far. I attribute that to the fact that I have learned, over time, ways to get passed the pesky things like what may seem like ungratefulness from the kids. Because I know it actually isn’t ungratefulness, it is rather that they expected things to be a certain way and they weren’t, which can easily ruin it for an ASD person. My expectations remained rather low, so everything was a pleasant surprise. Yes there were meltdowns, yes there was fighting and noise and these kids tested my patience throughout the entire evening. But that is the life w/ Autism, things are always like that. I knew it would happen so I never let it ruin the holidays. Since Im ASD I did what I could to remain as stress free as possible, I avoided trying to go for all the stuff that most people expect. I did not go “all out” when it came to the tree or decorations due to having the Destructo Beast around. No big deal. I kept the presents out of their sight until the day of opening them (which made a big difference). I made it a point to explain to the older ASD kiddo exactly what order everything would happen in. I never took anything personally when their reactions weren’t super happy… and neither did any of the rest of the family. We were all just happy to be there, happy to have each other, the kids were happy enough with their toys . I say this was an excellent Xmas.

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To Those Who Don’t Have Autistic Kids….

I am so TIRED. Exhausted, yes, but I’m also tired of hearing certain things from people. Why others feel the need to comment on situations they know nothing about, I don’t know.  In many cases I expect they are trying to be helpful, but at this point I don’t know how long I can manage that fake smile and “yea…” when someone says something a long the lines of “well all kids do that..” or “He/she doesn’t look Autistic,” or “I think it’s just a phase..” or my all time favorite “give him to me for a week, I’ll set him straight.” That one in particular is neither helpful or well meant. If someone says that they are automatically labeled an asshole in my book and not worth my time. It is an insult, plain and simple.

Let me let you in on a little secret, parents of kids without special needs, when we mention our kids “issues” it is not comparable to your situation. And that may sound petty or mean, but it is the truth.  While your child might run around when excited, or throw a tantrum when upset, yours will tire out at some point and the tantrums probably stop at a reasonable moment.  Special needs, namely, Autism parents may not know what that is like.  Sure, our kids are just like yours in many ways, albeit behind in some ways, and just as bright. But our kids also have sensory issues, speech delays, MELTDOWNS oh my god the meltdowns.. among other things. They have their tantrums too, be sure of it. But I can guarantee you that you have no idea what a meltdown really is if you don’t have a child on the Autism Spectrum.  More often than not, kiddos on the spectrum come as a package deal, by package deal I mean not only Autism but an alphabet soup of other conditions. For example, my ten year old is ASD (Autism Spectrum Disorder) ADHD (Attention Deficit Hyperactive Disorder) and Severe Anxiety. And I’d wager that most Autism parents have a kiddo with at least two, if not more, conditions.

Not only are the kiddos drowning in this alphabet soup, but they are also having to go to therapies, get treatments, more testing and more therapies and more testing throughout their entire existence. The parents of these kids are exhausted and barely standing on their own two feet at any given moment (so if they show you any sort of patience be counted as lucky, because most of the time our patience is used up on our kids, none left for you). They are scared. They are worried about what may happen to their kids if anything should ever happen to them. They cry when they think no one can hear them because they don’t know if their children will grow up to be functional adults. Functional not only in society but also with the simple tasks like dressing themselves, personal hygiene, keeping their house clean or even maybe one day have kids of their own, to name a few. These are every day fears for the Autism parent. Every. Single. Day.

But on the opposite side of that coin, milestones. The most amazing things. When a child on the spectrum reaches a milestone, learns a certain behavior or can sit through a hair cut or starts talking after years of silence, or eats anything other than the one food they’ve only eaten for friggin ever. No milestone is small, they are ALL big achievements. Things that you take for granted with your kids, an Autism parent loses their mind with joy when their child can suddenly start using the potty, put their clothes on, brush their teeth by themselves… stuff like that.  It is a constant battle with these amazing little kids, but when all the work finally pays off the reward is so awesome that I’m willing to bet some (if not all) parents will burst with tears of joy.

When parents who have no idea make the comments that you just shouldn’t say to an Autism parent, I try to remind myself that they mean well and they really think that is the right thing to say (most of the time). I would like to address a few of those comments, because I have heard them recently.

“All kids do that…” I’m willing to bet that this one is meant as a way to console someone who is talking about their child on the spectrum. But it has the opposite affect, it downplays the importance of a symptom of Autism.. When you say it you might as well add, “so it isn’t as important as you think it is,” or “it’s not a big deal, you are focusing too much on that one thing..” But I can tell you from experience, we don’t dream this shit up. The scenario most others are probably thinking of is something their kid does, which is normal behavior to them… because it goes away. But whatever you think the similarities are, an autism parent isn’t talking about what you consider to be hyper, or a tantrum, or picky eating… with us it is to the extreme. To the point that a meltdown usually occurs if the child becomes over stimulated by these things. Take what your kids do, any quirk or “bad behavior” and multiply it by a hundred, and you might have some idea.

“It’s just a phase,” or “They’ll grow out of it.” No, no they wont. Autism never goes away and it is certainly not a phase. These Autistic kids will one day be Autistic adults. Whatever obstacles a child on the spectrum faces, it reaches well into adulthood. Sensory issues for example, remain, they don’t go away. As adults they may handle a situation better from years of practice, but they deal with these struggles every day for the rest of their lives.

“You should discipline your child, they are spoiled.” Usually this is said as a result of witnessing a meltdown. A meltdown is something a child cannot control, it is a physical reaction to over stimulation. It is not the same thing as a tantrum, which is a child wanting a certain thing or reaction out of the parent. During a meltdown the child wont respond to anything, usually, at least not in a positive way. A tantrum can be stopped by giving them what they want or discipline, a meltdown cannot. An autism parent does discipline their child, they have at least tried every single form of discipline once. With some asd kids, discipline has no affect, and only positive reinforcement does. It depends on the child, really. But telling an Autism parent they are spoiling their kids shows you have no idea what they are dealing with. Absolutely no idea. Often times a child on the spectrum does receive a lot of leniency on a lot of things that other parents wouldn’t afford their kids. Again, this is a pick your battles situation. For example, a parent may decide to let their kid jump on the bed because that particular child has a thing about bouncing, probably it’s a stim (repetitive movement that helps regulate stress; flapping hands, spinning, bouncing, chewing, etc.).

“He/she doesn’t look Autistic.” Or some other form of it which includes “but he/she looks normal.”  I think in many special needs houses “normal” can be a dirty word. It is offensive. Just think about it. But to the former, of course the child doesn’t look Autistic… Autism doesn’t have any distinguishable physical trait. Most of the time you cannot tell someone is Autistic unless they tell you they are. Many have learned behaviors or ways to hide their quirks from others to help them in social situations. Unless you spend a lot of time with someone you wouldn’t notice it.

“Give him/her to me for a week, I’ll straighten them out.” I don’t consider this one to have any well meaning behind it. It is basically you saying you are a better parent than I am. And all I can think is that you would be abusing my kid. It then makes my idea of you become something less than nice. This is an ignorant statement, to say the least, and once said, it cannot be taken back. It is offensive and just shouldn’t be said. This is you basically acting better than me. Shut up.

Autism is not caused by bad parenting. It is also not a “designer diagnosis” and neither is ADHD for that matter. Trust me when I say that getting a diagnosis is not easy. There is testing and talking to a ton of different doctors and shrinks. Then starts the therapy and treatments and meetings upon meetings. The crap we deal with from the schools they attend is enough to make you pull your hair out. These kids are not bad. They are not spoiled. They are not broken.

And for the love of all things holy, do NOT apologize when you are told that they have a child with Autism. Autism is not a disease. It is not something we want you to feel sorry for. People with ASD are just that, people.  If someone tells you they have autism or their child does, they are not doing so to gain your sympathy, they are doing so to explain to you why they are behaving in a certain manner. When someone tells you “My child is Autistic,” or “I’m Autistic,” don’t respond with “Oh I’m sorry,” the better response would be acknowledgement and acceptance. If you have questions, reasonable ones, then ask. If you aren’t sure what it means to have autism, ask. Anyone who has Autism in their life is more than willing to explain it to you.

Personally, I love to talk about it. I like explaining it to people. I think that the more people know the better the world will be. Acceptance is key. That is all anyone with Autism really wants, to be accepted by those around them and treated like a person. Yes, it is difficult, but you can help by being understanding. It lightens the load a little bit to have someone to talk to.

An Autism parent doesn’t need your advice. We get enough advice from the schools and the doctors and the therapists. If you want to help, help by being there as a shoulder to lean on or an ear to listen, help by being a friend. Help by understanding.

Side note: It took me four hours to write this. I had to leave the computer many times to attend to the kiddos. And then at one point I hit the wrong button and lost all my work, which almost resulted in a freak out, then I found it again, phew.

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ASD Sibling Rivalry

Holy cow, you guys, it’s been four friggin months since my last post.

I have found it hard to get any real time to write with the kiddos being out of school, recently, but before that? Well, before that we had a ton of new things to file for… disability and other things. So I have managed to put those things on the top of the priority list, and once completed I simply retreated into my own little world of … well… being an Autism mom.  Those of you who have kids on the spectrum know that it can easily take up every ounce of your time.  Once you think you have them finally happy with something, another thing becomes an issue.  For example: I turned on my daughter’s cartoon (the one she has watched a million and one times) and thought it would, at the very least, distract her for a little while, but within moments of walking away she yelled for me to fix her shirt, it fit funny, then I walked away and moments later she wanted yogurt… then I walked away again and she yells that she made a mess, or wants cereal in the yogurt, or a new spoon or or or…

It becomes the norm, doesn’t it? Getting pulled in every which way, you want to go to the left but the kid wants to go to the right… constantly fighting for control of any given situation.

With my ten year old, things are pretty steady. He wants to play Minecraft or watch Youtube videos. Sometimes I suggest going outside… he says no, then I say “Boy, put on some clothes and go outside for a minute, would ya?” Because he likes to stay in his undies all day… of course.  And he whines but he does it eventually.. Then he comes in a few minutes later and says it was boring and is right back on the computer.

With my three year old, things are a bit more chaotic.  She isn’t diagnosed, yet, we are waiting on her eval which should be around January or so.  But she definitely shows the signs. Albeit she is more social than her brother, but then again girls kind of are. It seems, or so I hear from others, that the girls on the spectrum tend to mimic more easily and learn to socialize a bit better… but you can still see the signs if you know what you are looking for.  My girl is headstrong and sometimes mean.  She is finally starting to use more than one word at a time (speech delays that are finally getting better), two or three so far in a sentence, so that is a plus. But, she seems to be more sensory sensitive which leads to, more often than not, violent outbursts.  You can’t look at her without her losing her shit, basically, at certain times. Or touch her, or hold her, or talk to her. She has to come to you, otherwise don’t even bother. She is also a destructo beast. She runs throughout the house tearing things down from the tables, empties anything that can be emptied, and she likes to pour any liquid out and play in it for a while (perhaps she is sensory seeking?) until she is done and then yells at me because she is not happy with the mess she made.  She changes her mind like crazy, but once she is doing something she does want to do, it is hard to get her to stop that and start something else.  Also she doesn’t seem to have any real sense of danger… she climbs, jumps, runs and falls and then does it all over again. When she does hurt herself she brushes it off quickly and moves on, so she seems to also have a high tolerance for pain.

Those two together is insane. Her brother is not only ASD but also ADHD so he can run and run, which in turn gets his sister hyped up and she runs a long with him.  Then she gets mad at some point and they start fighting. She hurts him usually… he seems to be sensitive in that way, barely touching him is painful,and the end of the world, of course. And she is a bit of a deviant, I think she finds his reactions funny. I am pretty sure she doesn’t understand that he has feelings too. So basically every single day I have to tear them apart at some point, usually several times.  Right now as I type this, I can hear her yelling and it sounds like, for the first time today, he is actually trying to calm the situation rather than fight with her, so there is hope for this family yet. lol.

I’m trying to work out how to handle these two together. It doesnt seem to make much of a difference to explain it to her yet, she just brushes me off. Right now it is what she wants and it doesn’t seem she can be reasoned with. She is only three years old after all. So it lies on me and her brother to handle these things accordingly.  Disciplining the three year old is difficult. At least with the boy I can take away an electronic and explain why it’s happening… the girl, however, I think she only feels persecuted if I do try to discipline her. I have managed, at one point, to get her to listen by turning off her cartoon or threatening a nap…  she has listened to that, even if it is only for a few moments. But I can’t keep threatening things that I wont follow through on. So today, I actually did it, I turned off her cartoon, which she likes to have playing all the time while she plays, even if she isnt watching it. (I cant say anything bad about that, I do the same with my shows…) She threw her little fit, was not receiving a word I relayed, but when she wore herself out I managed to get her to understand that it will come back on when she settles down, and it friggin WORKED! Yes. Now, maybe I can work up to different punishments, because now I think I have started to get her to finally listen, if only for a moment. She isnt fully verbal so communication can be difficult between us.  I am not one of those moms who knows what every little sound means. I don’t know how these mom’s manage to decipher such things, but I certainly can’t. Every time I thought I had it figured out turned out I was wrong. so most of the time it’s confusion in this house, but day by day it is becoming a tiny bit better. Just gotta keep at it.

So, that is how my life is going. If I find anything that works with my *possibly* ASD and even maybe ODD little girl, I will definitely write about it.

And since Ive actually paid for the premium blog options, Id better keep writing or Im wasting my money. Expect more to come!

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FINALLY, An Official Dx For The Lil Man

So this week has been pretty busy.  The lil man had his evals all week. Instead of one long stressful day of tests and docs, it was broken down into three days for the boy. For that, I am so grateful.  Not only is it easier on the kiddo but it’s way easier on me too. The fourth day was basically just me and the therapist discussing the kiddo. And the fifth day we met for the final meeting explaining the Dx. Honestly, I was expecting them to tell me he was HF Autistic with Adhd. But turns out he has Classic Autism (which I think is moderate to mild) and adhd and severe anxiety. The anxiety is what worries me the most. I’ll get into that in a bit.

So in about a week or so, I go back to talk to therapists and the school (all together which is awesome, the schools are very involved here).  We will then draw up a plan best suited for the boy.  When it comes to learning, his ADHD seems to be what hinders him the most.  He has trouble concentrating and staying on task, easily distracted and incredibly hyper, and then the anxiety doesn’t help.  He has a problem with switching from one thing to another also, and his anxiety only adds more issues to that.  He doesnt want to try new things for fear of messing them up, he doesnt seem to have the confidence he needs. He is very capable of learning, very bright, and very well spoken.  His cognitive abilities are not at their best, though, due to what I stated earlier.

In my opinion, the worst problem is the anxiety.  Every night before bed he gets very scared of just about everything.  He refuses to sleep alone and nothing with a face can be in sight (dolls, etc).  The light has to be on, always.  So tonight we are going to try to change a little bit, but not too much.  We shall see how he does with me in the living room while he goes to bed. He can have the light on and the door open… and I am hoping that will be enough.  Every now and then his mind wanders to scary things ranging anywhere from worrying about my death to a scary video he may have watched on Youtube.  I swear I wanna snap the neck of anyone who posts Five Nights At Freddy’s on the internet.  The boy will watch that at a friends house and then later that night he freaks out because of it. With a mind like his, watching something like that is not a good idea.  He also has night terrors. And nightmares.  He talks in his sleep. He sleep walks. All these are hurdles, making it very complicated at bed time.  This anxiety is fairly new.  Well… at least I remember a time when he wasn’t so anxious. Although Im thinking it might have been farther in the past than I realize.  He has always been kinda scared at night, as any child could be, but lately, especially this year, it has evolved and taken on a life of its own. It is a tremendous problem for all of us.

A few months back I had a panic attack, seemingly for no reason.  Which I guess is kinda how it happens anyway, you think you are dying, heart races, feel like you are going to pass out, shaky, DOOM feeling, and holy hell it is one of the worst things Ive ever experienced. This happened in the middle of the night and the boy was fast asleep.  A few days later, he then also had a panic attack before bed.  And it made me wonder if maybe he was awake for it… but I am pretty sure he wasn’t.  Anyhoo, around then is when I realized how bad his anxiety was.  It was building to that, I suppose. He was slowly becoming more scared at night etc. I guess I just didnt catch onto that until he had his panic attack. He was shaking like crazy, heart racing, he said he felt dizzy and I talked him down and got him to bed.  Ever since then, Ive paid close attention to it and kept a mental note of it all. I then relayed any and every thing I could remember to the docs at the apt.

So after a busy week of apts, we finally have the Dx, and can now move forward with therapies. He is going to a shrink to take a deeper look into his anxiety to see what the best approach will be for that.  And then also the ADHD might need some work also.  It seems at this point the Autism is just underlying everything else. And as of now, his signs or symptoms are not even an issue when compared to the Anxiety and Adhd.

I want to close this off with a quote, my boy said this to me after one appointment.  “Why do people call Autism a disease? I don’t feel sick, or diseased, I am just me. I wouldn’t get rid of my Autism even if I could, it is me. The only thing I don’t like is how Im scared a lot, that is a pain. But I LOVE my autism.”  He is nearly ten years old. And very wise.

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It’s April 2nd. Autism Acceptance Day. So this is what I have to say about Autism.

I go on posting sprees on my Facebook sometimes.  And I assume it annoys many.  I expect that I have been hidden from a lot of peoples news feeds due to my usually controversial posts.  Today, it’s post after post about Autism.  I don’t know how many of my friends even know what it is, or know enough about it to really understand it.  My posts are public, mostly, and therefore I am hoping that whatever I find on Autism isn’t just seen by friends but their friends and they share and so on.  Usually I keep the Autism chatter to support groups.  Both of my kids are ASD.  Or, rather, to put it more accurately, my son is ASD ADHD at nearly ten years old and my daughter is undergoing testing now at three years old.  This month my boy is going for evals to see how he is doing, I am having to fill out a crap load of questions yet again.  Basically it’s like going to get tested all over again since we are in another country.  But I digress.  I wanted to write something about Autism in general today, being that today is about Autism Acceptance.

Acceptance is a better word than Awareness in my book.  Awareness makes me think of illnesses or simply knowing something exists.  Autism needs more than people to know it’s there, it needs more than tolerance, it NEEDS to be accepted by everyone.  Everyone.  It needs to be understood.  And that is a very difficult thing, considering that Autism is a spectrum, and every individual that resides on said spectrum is different from everyone else on the spectrum.  Sure, there are similarities, but a treatment or therapy that works for one wont work for them all, and so it is very complicated.

Understanding within the Autism Community is also needed.

Even trying to put it to words for others to understand can be difficult. I mean, how do you really explain it to someone who has no idea what it is like?  And therein lies the divide between those with Autism in their lives and those without.  When you deal with it on a daily basis, this mentality of ‘you just don’t get it’ tends to rear its ugly head.  There is even a divide among those in the autism community, parents with asd kiddos versus adults on the spectrum (who may or may not be parents), which is especially unsettling. I see the arguments arise online all the time. I notice that parents who are not on the spectrum tend to ignore the fact that their child with ASD will one day be an adult on the spectrum and they ignore any advice from asd adults (And yes, I know that not ALL parents are like that). It is that mentality that every parent seems to have (at one time or another) that no one else understands.  And I do get that, I was there at some point.  I felt very alone when my boy was diagnosed, because no one I knew was experiencing anything remotely similar.  But we are NOT alone.  So many other parents are dealing with this, in one form or another, so we as parents need to shed that view point that we are alone in this.  We need to realize that there are so many others out there that DO understand, so many in similar situations.  And we need to be supporting of one another, parents and asd adults, alike.

Children with Autism will grow up to be Adults with Autism

In some cases, signs or symptoms of Autism may lessen as a child gets older, but it isn’t always the case. In my case I am better with certain things, albeit mostly faking it for the comfort of others, but I still struggle with so much that I dealt with as a child. The only real difference in my life now is that I understand WHY I have those issues.  And I suspect this is the case with many adults on the spectrum.  During conversations online I get a lot of “well you seem very high functioning, you are lucky,”  like my life is so easy.  I can write, sure, but communication face to face is completely different. I revert to scripted speech.  I repeat things back to people as if on automatic at times.  I am not that eloquent in real life.  I have to rehearse what Im going to say at any given time in my head first before I open my mouth, otherwise I just stare back at the person without saying a thing and then holy crap… awkward for them.  When asked questions, I need a moment to think about my response, if I respond too quickly my words might jumble, or I might say something completely different than what I mean to because it was something I saved in my memory bank for another conversation.  Misunderstandings happen a lot.  I ask those parents of ASD kiddos to maybe think about that for a bit.  What I just explained is a mere fraction of what we on the spectrum have to deal with on the daily.  A lot of us, adults on the spectrum, like to point these things out to parents, and maybe try to get the parents to see it from the kid’s point of view. It is often misconstrued, and things usually are when we communicate something rather bluntly or worded differently than others are used to.  Many of the misunderstandings with in that community are simply because of the way we communicate. In my experience, many asd adults are argumentative anyway, so therein lies a hurdle to jump as well. Often times we are thought to be trying to one up you, or just arguing for the sake of arguing, or over explaining things (holy cow I don’t realize I’m doing it most of the time) but it is not the case. We try to connect by pointing things out in our own lives, as a way of saying “yes I understand that because..”  But it always turns out to be a retort something along the lines of “well I’m the parent so I know what it is, you don’t even know us,” etc.

Some things that piss me off (for lack of any better way to say it)

Ive always wondered why it is considered okay to tell an adult on the spectrum to grow up or that they are being immature. Why is it that adults are told that melt downs are not okay, that it is childish and that now that they are grown it is time to behave like an adult.. knowing that your child has those same meltdowns and same issues, would you tell that child to stop being so immature? Why is it okay for a child and yet when that child grows up, same exact issues as when they were younger, are suddenly expected to behave differently?  Why is that “he/she’s just a child” an acceptable justification for behavior that affect so many of different ages? Why are people only considering the children in all this? WHY the hell are people creating this divide between kids and adults on the spectrum? Exactly WHEN do you expect your child to suddenly be “normal”?  Are they supposed to wake up at age 18 and decide not to be autistic anymore? Apparently, we adults on the spectrum are supposed to be able to stop a melt down, mid sensory overload, or whatever other reason our melt down is about to occur. We are supposed to be able to stop it completely and then be POLITE and APOLOGIZE to those around us, rather than explain our Autism. Because explaining our Autism is us using our Autism as an excuse to behave like children. The way our brains work, are wired, wont automatically revert to typical at age 18.  It just doesn’t happen.  There is absolutely no way to cure Autism, all the therapies in the world wont turn a neuro diverse individual into a neurotypical.  It just doesn’t work that way. Some things might get easier to handle, but in my view it is simply for the sake of others. Even though someone might be able to socialize better, I can probably guarantee you that those same issues are still underneath the surface, and that individual has learned how to divert certain behaviors… and then they go home and stim their butts off to avert a meltdown… or something like it. Or maybe fall asleep from exhaustion of seeming to be normal for everyone else when they’d rather just be themselves.  This is why acceptance is so important. Autistic people should be able to be themselves without having to apologize for something they CANNOT control. Oh, we can hide a lot of things, those of us that are higher on the spectrum, but it doesn’t mean that anything is easier.  And you can bet your bottom that I wont be thinking of how to behave to make others feel better when Im having sensory issues. If the lights are hurting my eyes, the sounds hurt my ears, I’m getting a migraine because of it, the last thing I want to do is try to make sure you feel comfortable, with your self righteous ideas that others have to behave a certain way for you. Because you are so goddamn important.  If the sounds around me are all melted together into a loud buzzing noise, causing a fog to roll in over everything, and I cant hear anything you say to me, the last thing I am going to worry about is if my lack of response offends you. Because dammit Im in pain sometimes, I have to get away from the noise, the lights, the textures and smells that over whelm me. No, I wont grow up and deal just because you think I should.  Let’s see you handle one day in my shoes, then see if you can grow up and just shut it all off and be NORMAL.

Okay that turned into a rant, as my posts so often do. But I get heated when I think about these things.  Maybe this post is a bit more raw, real, and honest.  Maybe this post will help others understand just a little bit better. Maybe.  Or maybe I just sound like an asshole.

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