Tag Archives: rules

Love is blind – Marriage is the eye-opener

13 Dec

Look Me In The Eye: Love is blind – Marriage is the eye-opener.

Is it ever!  Phew. I’ve been running this marathon for 11 years (with 4 years spent prepping for that marathon.  Needless to say, prepping for a marathon with running on a treadmill is a completely different sport than running an actual marathon.  And yes, I feel that “Heartbreak Hill” applies to this metaphorical marathon as well.  And no, I don’t actually run on anything except for my sentences.  Bah-dum-dum-tsch.)

Click the link above for a fantastic piece by David Finch, who guest-blogged this post on John Elder Robison’s blog.  Fantastic writing and I found myself nodding my head so much that I feel like I’m still nodding my head, minutes after I stopped reading and nodding.  Capisce?  Good.

Enjoy.

xo

Bek

p.s. David Finch’s book “Journal of Best Practices” is coming out on January 3, 2012.  You can preorder it here:  Amazon.com

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Ten Tips… An Autistic’s Advice

5 Dec
Tomato Tomato.  It's only different if you say it aloud.

Tomato Tomato. Lets Call The Whole Thing Off....Doesn't work so well when typed.

A fantastic list of 10 tips for teachers, that really should read:  Ten Tips for Everyone.    Every person that interacts with the world, in any way, shape, or form will come in contact with a person with autism at some point and probably more frequently than just once or twice.  For that matter, every person does come in contact with people with various disabilities, some of them “invisible disabilities”… So yes, everyone should read this and mentally slather it onto their brains as “Ten Tips to Mindfully Communicate With Your Fellow Humans, Especially the Ones Who Seem To Be A Little (or a lot) Off Center In What You Consider To Be ‘Normal'”. 

My apologies for using that “N” word.  Most of you know that I find that N word to be outdated, on an even keel day, and mythical on the other 364.

Clickety click the link below, and check out the tips.

Please comment below if there is anything you would add and if you have examples of people doing the opposite… Me thinks it helps to bridge the gap between us and them when we can share examples.  Too many of the folks not living with disability or a difference that impacts every single morsel of their lives, think that discrimination and just plain douchey behavior doesn’t happen anymore because “people know better” and “there are laws” and when we do share our stories with others we are often told that we just misunderstood or worse, that clearly we have a chip on our shoulder.  Gee. Thanks made-for-cable-TV movies and sitcoms. Stereotyping us as bitter-because-of-our-physical challenges or extra-sweet and gullible because of mental and emotional ones, either keeps folks away or lets them feel no guilt whatsoever when they slip on in and take advantage of us.

Those of us who live with “it” everyday know that the treatment of people with differences and disabilities is like Betty Crocker’s iconic female face.  The clothes have changed.  Makeup and hair have been updated.  But it’s still a box of cake mix.  Capisce?

Here, as promised way back in the beginnings of this post, is the link:

An Autistic’s Advice: Ten Tips for Teachers.

xo

B

Homework, Demons, and Metaphorical Mountain Climbing

16 Apr

We all want our kids to do well.  Sometimes, I know Alex is working his butt off but people who are not me, who do not live with him, who have not struggled to achieve almost every childhood milestone with him, cheering him on, cannot see the effort.

I think this probably happens to most parents at some point in their child’s education, but I have a hunch that those of us with kids who aren’t just “wash and wear” (wash and wear kids are born, hit their milestones, and for the most part only visit a regular pediatrician) have this feeling more frequently.

I sometimes feel this need, this drive, to correct the tiny things, the little oopses, so my kid can shine and people will stop seeing only the little tiny bits that need extra care and all sorts of implements and technical terms and see him as the whole, amazing person he truly is.

Which is, well, what we all want.  It’s just that Johnny (generic Johnny, not a real kid) never got the raised eyebrow from the pediatrician or the talk in the hallway from the preschool teacher (and the business card with the number of Easter Seals on it)… But Alex did. So for me, at least, that makes every victory that much sweeter and as his Mama it makes me fiercely defend what he can do.  And he works hard. Really hard. Other kids in his class have playdates and sports and even siblings. We don’t have time for that. We have Asperger’s (his and mine) and a whole buffet of physical disabilities (mine) that make this “acceptable”(for a typically developing child) amount of homework one of the only activities our family has time for.

I realize that my child may look lazy or confrontational at times or like he just isn’t listening. But he isn’t those things and he is listening.  When his teacher said “Alex, you only do your homework when you feel like it” she devastated him.   Alex doesn’t “feel” like doing 4 hours of homework every night.  Alex doesn’t feel like missing out on all physical activity and fun because he struggles to understand and at the end of a 6.5 hour school day, the last thing he is ready to do is put his nose in the books and pencil to paper.  He needs time and space to decompress. Any kid would.

I give him two rules for his day as he stands by the elevator in the morning, “Have a great day” and “Do your best”.  I am at the point where wishing him a great day seems too loaded, because then he feels like he broke a major rule if he doesn’t have a great day and that’s the worst thing for him because  Alex doesn’t break rules. He can’t. He’s not wired that way.

So we are waiting for our meeting with the teacher.  I don’t think that she really understands our kid. We gave them piles of information (and well crafted summaries, so as not to overwhelm). I feel like they were ignored and here we are.

I feel like we can’t ask for anything because it’s a private school. I feel like we can’t push it because we can’t put him in our local public school. And I’m too sick to home school him and 18 months of zero income and sky high COBRA health insurance and being sick is expensive. These things have left us so deep in the hole that the future is forever changed and we are indeed so very stuck.

Alex broke down yesterday and told me that he hates school.  He said that everyone makes fun of him all day long.

I broke down too. Because that’s my kid. And there is no way in hell (or Florida) that I will let him experience what I experienced at his age and most of my life with my peers and with some adults.  I don’t have to worry about him not being accepted by his parents, because he is mine and no matter the challenge, he will have me by his side, ready to tackle it.  But schoolwork is making up 100% of his days since they bumped him into the first grade.  And if he hates school, that sadness, that feeling of rejection, is riding on his shoulders.  The kid is brilliant, I can’t have his self esteem or his desire to learn squashed this way.

So we are waiting for the meeting.

And I’m compiling bits of evidence to share with the teacher and the administrator that show how Alex’s mind works and that he isn’t being a defiant little brat, but that this is his neurology. This is his wiring.  It is amazing and it makes him who he is and he is a spectacular human being with an incredible mind and a spirit that needs to be supported and encouraged and not squashed like some unsavory kitchen pest.

So here’s the evidence from today.  Here are Alex’s spelling words:

He has a bunch of activities for homework, every week, that involve the spelling words.  The activities are actually pretty cool, as the kids learn spelling, grammar, etc…  But with the amount of homework, Jeff has found that the best way to tackle these things are to get Alex to first transcribe the words onto lined paper and then go through word by word cracking out the activities for each word, assembly line style (or “Robot Style” as Alex and Jeff prefer to call it as it is much cooler sounding).  So I had Alex transcribe his week 3 words 3x today.

Do you notice anything?  I was going to correct him at first…

See how “photographs” (his handwriting has come so far in the past few months!) is above the dotted line on the paper?

I said to him “Hey Alex, why isn’t photographs on the bottom line?”

And he said, because that is how it is written on the list of spelling words from the teacher and he told me that he has to write it the same way or she’ll be annoyed that he didn’t follow how it was written on the paper.

So I looked.

Here it is again:

To fit the word “photographs” in the list they had to shrink the font.  So the bottom tail of the “p” isn’t touching the line at the bottom of the box it is printed in, the way the rest of the p’s on the list do.

So he wrote it above the bottom line on his paper, so it would be precise enough for him to avoid reprimand.

I had him leave it alone rather than explaining it and rewriting it. Don’t worry, I’m not throwing him under a future bus, I will explain it to him but just not until I get to talk to the teacher or we are eyeball deep in next week’s words because otherwise he will flip his lid until he can correct it.  I told him that it was indeed written that way and that I would talk to his teacher about it.

I want to scream “SEE! SEE!” and jump up and down in the schoolhouse.  I want them to see that this isn’t attitude or defiance or stubbornness or just some weird but average kid who demands things his way.  This is MY kid. My wonderful amazing kid who has Asperger’s Syndrome and he doesn’t ever  break the rules.  Breaking rules is actually painful to him.  Writing the word “photographs” on the regular line would have been breaking a rule to him.  And all he wants his teachers and the other kids to see is that he is a good boy and that rules are important and that he always follows them and they can rely on him to remind them of the rules or even teach them new rules, rules that aren’t strange and bossy rules, they are rules that if everyone followed them our world would be a much calmer and happier place.

He occasionally makes up rules.  Like the list of rules he made for Jeff and me when we were upset about something.   He wrote his observation, “They weren’t happy” and his new rule “Be happy” in the little notebook that I used to help him draw paw prints in (I would leave post-its with paw prints around the house for him… it was our own little game of Blue’s Clues).

But other than that he just really wants people to:

Not run in the classroom

Be nice

Use indoor voices when indoors

Help each other

Not tap pencils when other people are trying to concentrate

Not talk when the teacher has said “No Talking” (and he always gets in trouble for talking during this time because he is trying to tell the kids who were talking initially that there is “no talking”)

Know what a good friend he is (he reminds me of this all the time.. I know what a great friend he is, but he wants a chance for the other kids to find out)

Respect electricity.

Are those rules really that far out and unreasonable?

I don’t think so.

And I’m not coddling my kid.

I just need people who have contact with him on a daily basis and are supposed to be fostering a love of learning to know that he is indeed organically different from the other kids in the class.  I need people who have contact with him occasionally (very occasionally) who have not given me the benefit of the doubt to give him the benefit of the doubt, and if they truly love him, to give him that benefit of the doubt while not taking advantage of our overly kind nature and our desire to fit in.

Every kid is different.

My kid is different from all of those kids.

We just need people to respect the differences and not make assumptions about our kid, about us.

I have lived my whole life with people judging me and not giving me the benefit of the doubt, my brain is full of facts to defend every action I have ever taken.  But that stops now.  I am who I am. Alex is who he is.  I’m sick and tired of dealing with other people’s laziness and closed mindedness and I am just not going to tolerate it anymore.  I’m so full of this frustration and anger lately and digging up old bones more than usual because I need to figure out where I screwed up – not in what could I have done differently to not provoke the wrath of various people- but rather what did I do to make them think they could treat me the way that they did.   And there isn’t an easy answer.  This isn’t about self-help books or talk shows. It’s about people treating each other in a mindful way and not always taking the easy and selfish route. And it will be a cold day in hell (Florida?) before I let Alex become a doormat for other people’s demons and desires.  And the best way I can do that is to stand up for myself and be the best damn role-model I can be. After all, I’m his Mama and his best friend, and together we can scale or topple anything that gets in our way.

Chances are though, we will still politely ask it to step aside first.

Then we’ll topple the daylights out it.

*cue soundtrack to Legend of Billie Jean…Glad I hid my haircutting scissors and Jeff’s clippers before I decided to blog this evening*

xo
Bek
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Rolling Rolling Rolling….

5 Aug

You Got To Roll Me….

Originally uploaded by CleverIndie

Keep the dice a rolling

keep the game a moving

don’t ever lose that die!

Rain and wind and weather

hell bent for jenga*

wishing my bro would lose and cry…
*uses a six sided, six color die according to wikipedia.org. Yes. I checked. Would you expect less of me?
We are just getting to the point where playing board games is not eerily reminiscent of my childhood (as an only child, living in the middle of the woods, no cable, and I was the weird kid. I learned to play every game by myself. Even hide and go seek. It’s true. More on that someday. I’m just starting to own that part of me.)…

Alex will sit and play and follow directions (with a great deal of repetition on our part) for a little bit- though his attention is still somewhat short…

All of the games we have happened upon lately seem to have die or dice involved. We have been rockin’ the Monopoly Jr., Clue Jr., and Mouse Trap.

Part of the motor skill challenge has been rolling the die or dice (and actually having it change to a random side). Part of the “I have an almost 6 year old” challenge has been getting him to not pretend to roll it so that he miraculously gets 6 every time, because at almost 6 bigger always seems better even if it gets you sent back to the start of the game board.

We also tend to play around our lovely Noguchi glass coffee table as we can all sit comfortably (and my work is usually overpowering our little kitchen table…Still want my Edison farmhouse table. Someday it will be mind. Someday.) Not only is there glass, there are a few choice knick-knacks near by that are probably not-so-durable and there are two big club chairs and a love seat. My arthritis refuses to get down on the floor to retrieve overzealously thrown dice (actually it’s more of a problem evolving back into an upright position these days).

And I fear glass chips and broken knick-knacks. And face it, my kiddo is wonderful with many things, but his motor skills are a major work in progress.

So here is my solution.

I took a tin with a clear lid (the lid covering is plastic- I do not suggest trying this with a glass-topped tin) that is of the “deep” variety (I got them from SpecialtyBottle.com – the one shown in my image is a 4oz/deep). I popped the die in, closed the lid (the lid isn’t terribly loose but it is not secured outside of friction- so if you feel you need a sturdier hold try some masking or electrical tape around the edges.

And voila! Alex can shake-shake-shake and I no longer have to go fishing for game pieces, the coffee table is intact, and my curios are happy campers and have removed their helmets and safety goggles.

This also helps teach him the rules of “rolling” – he has to give it a few shakes and put it down. This has made a huge difference in his comprehension of rules- those of the game and those little social game play rules. Eventually he’ll roll by himself, but for now this lets us play and show him the joy of playing boardgames as a family. He can focus on playing and not obsessing over this one small part.

The containers are too big to squeeze into most manufacturers game boxes and I like to keep all parts in their respective boxes, so we have one “rolling” container. If he was younger and more apt to try to consume the parts during game play, we would probably secure the lid more permanently.

xo
Bek

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Dr. Literal, Mad Scientist

4 Apr

Raaaaaaaar!

Originally uploaded by CleverIndie

We are so used to Alex taking everything so extremely literal, or having a rather drawn out reaction (he’s a worrier) to things that are even slightly out of place that we really do what most folks would call “overthink” when it comes to daily activities, gifts, even clothes.

I’m guessing that most parents with kids with ASD or Asperger’s or anything under the PDD header go through this as well. I hear complaints about it and how it’s “abnormal” from my mother (her word not mine) but really, we don’t have much of a choice. It’s not that we spoil him so he always gets his way. We do take preventative measures with some things- we brief him before we do anything new.

I’m sure any parents of non-ASD kids make sure they have batteries for the toy they are giving their child as a gift, or else there could be some serious fallout (especially on Christmas morning, or if there is a sizable quantity of sugar involved).

We are that prepared for everything. It’s getting easier, as we have been working our behinds off with Alex, trying to improve his flexibility, self-soothing skills, and creative problem solving. He has come so very far- we can now crack the occasional joke and he will laugh or even if its not funny (joke delivery is not one of my well developed skills, I confess) he won’t break down into a full on freak out that takes over an hour to calm him.

Recently, he became the proud owner of an Easy Bake Oven (for use only with us, of course) -the image clearly shows a digital clock on the box- so I read every mm of that box for the words “simulated digital clock” or something similar. When we got home and unpacked it we found out it is a simulated clock, we braced ourselves, but Alex announced he could use my little kitchen timer instead. Phew. Big sign of relief. This is a kid who has been carrying around my old, broken cell phone for 2 years and until recently would not play telephone with it, but would follow me around trying to calmly explain that all it needed was to be charged up and as the grownup it was my job to plug it in, in complete denial that it was completely busted, and then would have a meltdown when we took it off the charger and it still didn’t work.  Recently though he started clipping it to his pants and paces around talking to various people on it. He is pretending, this is huge. He’s really into it- to the point where  he’ll say “shhh, I’m on the phone” with his hand over the mouth piece, if we are repeat offenders we get nasty looks and occasionally the suggestion that we will get a time out if this interrupting continues.  I’m so proud of how far he has come….

Just when I was thinking that we are out of the woods on maybe one little thing, we had another literal interpretation incident though that really drove home the recognition of what a strange place the world is, as a sum of all of it’s parts -particularly those with marketing and advertising people behind them.

From the bathroom I hear (Alex is an announcer. He narrates every moment of every day, repeating much of it a few times until someone acknowledges what he said by repeating it to him, at which point he will correct them or act angry as though we can no longer discuss the topic at hand.)

“I’m using the water to make the bubbles go away, but it keeps making more in my mouth”

Then he comes around the corner and he’s wiping out the inside of his mouth with a hand towel.

He announces “Oatmeal and Butter, I didn’t taste the butter, I don’t think there was butter in there. Is there butter in there?”

Our child, who approaches even edibles with great suspicion, apparently saw the new soap pump next to the basin and his brain interpreted the soap to also be a snack- one of “oatmeal & butter” which are two things that he really likes, so he squirted a bunch of the “oatmeal & shea butter liquid hand soap” in his mouth.

Yes, I realize we are very lucky that it wasn’t something toxic. He has been making great strides in reading and he is very rules based and a very cautious guy. We have had other tasty sounding soaps (milk & honey, almond, grapefruit, etc) that he never would have thought of tasting, so what made this one different? On the bottle it has a photo of a bowl of shea butter (all whipped up, could easily be seen as regular culinary butter) with a pile of dry oatmeal sprinkled around it. The other soaps we have had, that had culinary inspired fragrances, only had the names not the images- Alex reads very well, but as a kid who usually needs a visual reinforcement, the snacktime liquid soap from today really had him thinking he was in for a tasty treat that he could not resists (other household cleaning products don’t interest him at all- never had, they are locked away, of course… He has his own small spray bottle of water, vinegar, and lavender oil that he cleans his desk, snack tray thing, and step stools with).

By the way he said the soap didn’t taste so bad. Good to know.

From now on we will be using a refillable dispenser, and when shopping I now know to avoid anything non-edible with an image of foodstuffs!  Oddly enough, when I was very little I was threatened with having my mouth washed out with soap around the same time I learned the term “acquired taste”, so I would eat Ivory soap (and occasionally dove, depending on where I was in the house) a little fingernail sliver at a time.  I think I assumed that if my parents swore so much that I would someday speak like that as well, and I wanted to be prepared.  Imagine the horror on my mother’s face when she said she was actually going to wash my mouth out with soap and my response was to grab the bar and take a large bite out of it without flinching.

Anyway, hugs all around!

There are a few new pieces in my Etsy shop… Still on my crazy medical journey…And still getting the new blog just right so I can have a good and proper blog-warming!

xo

Bek

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