Sometimes you just have to listen

Tonight has been a night like most other nights…ipad, changing the video/DVD (yes we still have a VHS player and blues clues videos he discovered after Netflix dropped it), shimmy, jumpy, tipping the trampoline, being dragged around the house…just another night in the house where autism lives. However, as the movie ended, and I told E that we were all done because it was almost time for bed, and to watch something on his ipad…he stopped in his tracks. Now I’ve raised, and helped raise, a lot of kids and foster kids, so I’m pretty impervious to screaming, crying, whining, pouting, and meltdowns…but what he did next almost made me cry. He stopped, and his face froze, and he stared a moment, then in almost slow motion i watched his face just crumple, and his lip quiver as if he was trying to hold it in…and then the dam broke. It was almost like a movie scene where the kid finds out his favorite ____ just died…but not at all manufactured, he was devastated. I’m still trying to remember if I’ve ever seen that set of emotion in him before.
I picked him up and held him a few minutes…and then set about 3more songs to play on the DVD. Maybe I shouldn’t have given in, but it was a moment you’d just have to be there, and KNOW E, and understand that even though you don’t understand why…at that moment, a few more songs was very, very important.
So after it was over…time for bed…he was still upset, still cried, but not to the same degree. Something was different with him in the bedtime routine as well, he’d calm for a minute then cry again. So I started to rub his leg…as I read the story, sang our songs…and anytime I stopped he’d put my hand back showing me to keep on. Normally its routine, then lights off, then he goes to sleep on his own…but tonight…something is wrong…I don’t know what, maybe never will, but it is…so I stay, and lay next to him, and let him know mommys here, and he’s safe. I stay until he falls asleep. Hardly any words are spoken by me, none by him. I wish he could tell me what was wrong…but I try to listen…to his stims, to his mood, to his activity level, to anything and everything I can. He is never speaking, but he is always communicating….I’m sure i miss more than i catch…but I am always trying to listen.
I have heard autistic people stress over and over that ALL behavior…good and bad…is communication-especially for non-verbal people. Many people don’t even try to listen…they see the behavior, not the person reaching out….trying to make their “voice” heard, and becoming more and more frustrated at not being understood in their attempts.
Tonight he was just a kid that for whatever reason needed his mommy, and I took the time to realize that and respond.

Hardly any words were spoken…but there was communication.

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How disingenuous can you get?

Didn’t really need more reasons but really? Follow the link..then read the comments lol

ischemgeek

So, not only did Autism Speaks quote Kassiane Sibley without her permission, portraying a well-known and vehemently anti-Autism Speaks autistic advocate as if she was a supporter of theirs.

They then claimed to have permission on her blog.

They then claimed they would take it down.

They instead white-texted it.

They finally took it down after being called on it…

… then they changed the URL and quietly put the white-texted version back up sometime last year.

Alyssa of Yes, That Too has a much better run-down of the whole thing here.

Their white texting makes their toolkit – in which they’re still using her words without her permission – come up on the first page of Google when you search her name. For some permutations, it comes up even before Kassiane’s own sites.

I won’t say this is a new low, because that would minimize all of…

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Walking backwards.

Sean does all his math in his head…always has…and always getting counted off for not showing work :/ frustrating….though I’m sure not as much as it is for him

ischemgeek

As easily as most people speak, I used to math.

I could math subconsciously. And quickly! So quickly. Faster than a calculator. My parents used to show me off to their friends.

And it felt right in a way that words can’t describe. Just the incredible rightness of getting the answer and knowing it’s right because it feels right and it completes the problem, like I imagine how creative people must feel when they find the last stroke of the brush a new painting needs. 

It was as easy to me as walking is to you.

And then, it stopped.

Because, you see, my way of math was wrong. “You can’t do that in your head!” adults started to tell me. “We need to see your work.”

Never mind that my work couldn’t be worded or written in a way that made sense to them. “It’s right because it’s purple”…

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What I Wish I’d Been Made Aware of When My Daughter Was Diagnosed With Autism

As I have been doing a freelance job for a family friend on top of my normal duties, I have been pulling 18+ hr days and had little time for blogging. So I thought Id reblog some of my favorites…
This is an older post, but is one of my go to posts when I see those familiar posts from a parent “my child was just diagnosed…I’m lost, scared, heartbroken, where do I begin?” I don’t know if any of them actually click on the link and read…but I hope that somewhere at least one has, and has opened their mind to it and to their child, and the endless possibilities.

Emma's Hope Book

What follows are some of the things I wish I’d been told (and given) when we learned Emma was Autistic.  These are the things, in retrospect, I wish all those doctors, specialists, pediatricians, therapists and people who dedicate their lives and careers to autism had told me, but did not.  I believe our lives would have changed dramatically had we been told even a few of these things.  It is my hope that for those of you who may be at the beginning of your journey with an Autistic child, this list might help you avoid some of the many, many mistakes we made and a great deal of unnecessary pain.

1.  Seek out the work of Autistic people ~ most of the work I’ve listed was not available when my daughter was diagnosed, but it is now.  Take advantage of all that is out there, these people are leading…

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Seeking answers that don’t exist….

Aside

ImagePhoto

I stole this quote pic from Jess at http://adiaryofamom.wordpress.com she is one of my two favorite parent bloggers.  The quote was taken from a comment left on her post by M over at http://theinvisiblestrings.com I encourage you to check both of them out (and no linking still doesn’t work on my ipad) credit having been given where it’s due…on to today’s post 😉

Let’s think about this concept for a moment…really think about it…done yet?

For any of you who have been on the autism journey for at least….oh I don’t know…30 seconds? You are well aware of how crazy it can be.  From the moment your child or yourself are diagnosed, there is a constant stream of suggestions by well intentioned people, an attempt to research will throw you in a thousand different treatment directions, every support/parent/autism group you join is full of “have you tried this?” “Oh I swear…..is helping little Johnny” and so on and so forth.  I think as parents in the crazy journey, we just want to help our kids, to “fix”it, to make things easier.  We instinctively want to be told “hey follow this step by step plan” and here is the answer you’re looking for! Right over here and here just do this and like magic everything will be ok!

Many of the more widely known organizations tell us about how our children are lost, and will destroy marriages, and that if we don’t fix them we will spiral down a path to mental and physical illness because of the stress.  The perpetuation of this mindset, and our natural desire for things to be “normal or better” have led to parents doing some radical, sometimes even dangerous treatments, or constantly feeling guilty they’re not spending every waking moment engaging and seeking more and more intervention for their child.  They become so desperate for someone to have all the answers for them that they lose their BS radar.

The truth is NO ONE has all the answers…the closest people to it are the people that live it every day…not some scientist, not some psychiatrist, not a naturopath, not and herbalist…not anyone!. I live with E every day and feel I know him better than anyone on this planet, but yet I am continually stumped.  Even so, why would I trust a person who might spend an hour or a day with my child or who has never met him at all, to instantly know exactly what he needs? What he is capable of? I don’t!

In talking with various autistic people over the last year, scouring their blogs, reading their comments on each other’s…the same theme keeps recurring…I have not yet seen one that endorsed the rigorous therapy regimens and assimilation practices that are so widely recommended and followed.  What do autistics themselves recommend and wish for this generation? It’s very simple…provide a vehicle for communication, provide support, and love them unconditionally for who they are not despite it…for those non speaking, an additional task…just because they may not be able to show their intelligence in a way you understand, don’t assume it’s not there.  The things I just mentioned…sprinkled with a dose of time is the best step by step plan I know of. And the best place to find those answers we seek? The autistic community itself!

Slow is relative…

While reading one of my favorite blogs this morning, (grr ipad won’t let me link but if you haven’t been there yet I encourage you to check out http://www.emmashopebook.com ) I was reminded to look back at the past few years.  In doing so, I realized just how much the word and concept of “slow” are relative.  Sometimes in day to day life, things appear to be at a standstill, or moving at an excruciatingly slow pace. And sometimes it can put quite a damper on hope…you start thinking of all the things you wish would happen that just don’t seem to be, “am I going to be changing diapers forever?” “Will he ever use his talker for anything more than requesting snacks?””will he….?”.  It can direct your focus to things that aren’t happening rather than those that are, and can even steal your joy.

And in the midst of all those “will he”s, you remember to look back.  Those things you questioned a year ago are now happening, and you realize just how far things have come! And you realize all those small, seemingly slow things together add up to light year speed progress!

Let me illustrate:

Just two short years ago Ethan seemed to have no concept of…well almost anything honestly.  He seemed to understand a few words, but not the idea of communication, eg it say, point, or otherwise indicate my needs and someone answers. And I use the word appeared because we may never fully know what went on inside his little mind or what he was capable of understanding because he had no way to show us. He didn’t really interact with people or things, didn’t even seem to realize anything that went on around him. He seemed basically to be that infamous autism stereotype of  “locked in his own little world”. He also had fairly severe problems in other areas too…couldn’t navigate steps on his own, could barely run, and couldn’t jump. The list of all the things he “couldn’t” do went on and on.  For all intents and purposes we were told most of his skills including cognitive (thinking and problem solving) ran from a 4-12mo level.

So now, fast forward two years…which in all reality is a tiny slice of time in his life…he still scores low on the tests, may always, because those tests weren’t made for him, but let me introduce you to the Ethan he is today…

He knows colors, shapes, numbers, and letters…has for quite some time now, he is trying super hard to master counting on his fingers, he can spell his name, dinosaur (that was a shocker for sure), and god only knows what else.  We believe he recognizes some words but have no real way to test it. He’s learned to operate the glider on the swing set, and even the age old climbs up the slide backwards lol. He can climb stairs, jump on his trampoline, and give us heart attacks climbing in and out of Sean’s loft bed.  He is learning to use an AAC to communicate, or if he doesn’t have that option, can find alternate ways of communicating what he wants or needs.  He can operate an iPad better than anyone in the house, taught himself in about 10 min when he first got it (Around 2 1/2), including finding particular scenes in his favorite shows on netflix in seconds.  He can do 20 PC puzzles on the iPad too.  He interacts with those he’s close to, and sometimes will spend an hr or more in my lap.  He understands lots of phrases like throw that in the trash, or go get a diaper.  The list of things he CAN do could take up many more pages than what he can’t do ever did…but I’ll spare you a more exhaustive list lol.

The point is this…sometimes progress can seem so slow…but sometimes, looking back can give you that perspective shift that you need to keep moving forward.

Scenes from Silent Monday (I)

Now this blog post is giving me something to think about…and I was just considering the fact that she chooses to be silent on a certain day and had contemplated how it might feel to be and someone on a different part of the spectrum who cannot speak. Being a mother of a child who cannot speak, it makes me think maybe this is an exercise I need to try. Now, I hardly ever leave the house but say that I do…my line of thinking is more to take this and go different direction with it and see what it might be like for him to have to use a communication device all day. His speech therapist and parents and everybody you know we want him to suddenly be able to speak in full sentences we know that he’s capable of but we dont know what its like to have to sit there and pick and choose every single word or just type out one letter a time everything in your mind. You know I don’t know how I would accomplish this I’m sure there are some rudimentary programs for my phone or, being horrible person I am I still haven’t returned the loaner device so maybe before I do so I should spend a couple hours or couple days just having it be my only form of communication so I can step in his shoes just a little. I know just trying to show him where things are on his screen how difficult it is for me is an adult so why do I expect so much more from a four-year-old child. I don’t know just food for thought I guess, and I guess should I decide if this is something I want to do then I will let you know how it goes.

On this Third day of 2014 I have sorely ignored my blog for the most part and usually when I have time to think, and have an idea then I don’t have anything near me to actually record that idea on. Also, when I sit down to write then everything disappears out of my head. But there’s so many things that my kids do everyday, and then I learn things every day that I like to record for posterity sake I guess, and share with all of two followers that I have…so I’m going to try to step it up with the blog and get some stuff done.

Musings of an Aspie

Happy 2014! I hope you’re all staying warm. This is the first in an occasional series of reflection posts about Silent Monday. 

Intentional silence–silence by choice on Mondays–is forcing me to think hard about involuntary silence. It’s also raised the question of when do I need to speak and why?

Passing someone on the street? That seems like an obvious don’t need to speak situation. A nod, smile, wave or some other gesture passes for acknowledgement of the other person’s greeting or existence.

Impromptu question from a stranger at the gym? Might be able to take care of that with a nod or gesture. Might have to speak.

Picking up a package at the apartment office? One (but not both) of us will have to speak. The Scientist and I divide up the responsibility, taking turns doing the necessary interacting with strangers.

Replying to a stranger who stops me…

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