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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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This is AWESOME!

17 Mar

I la-la-la love this.

Thanks AANE for sharing this link!

From WGBH’s press release:

Episode #1306
When Carl Met George
George is excited about spending time with his new friend, Carl, who loves to draw trains and
knows all kinds of cool facts about them!  George discovers that Carl has Asperger’s Syndrome,
a form of autism, and that Carl sees the world a bit differently than George and many kids.
Despite their differences, George and Carl become great pals – and learn a lot from each other.

The full episode, When Carl Met George, premiers on April 5th! Be sure to check your local listings!

xo

Bek

Alex & The Time Machine

25 Feb

Alex & The Time Machine

Originally uploaded by CleverIndie

I was attempting to nap yesterday afternoon, as I was wiped out from the MRI contrast and as I had to take off the dexcom for the MRI I took the opportunity to test out my old (not expired, just previous) pain meds, which made me quite drowsy – which I do not remember, so maybe I was just drowsy because the pain was low and so manageable…  My eyelids fluttering closed is the signal for kiddo to find the noisiest game or toy to play at this end of the condo, while hubby disappears into the bathroom or suddenly is compelled to do something that he has had years to complete but right now he cannot he break focus from it.

So I usually don’t wind up napping.

Once I was out of bed, and annoyed, kiddo decided that he was going to nap. And he did. We could not get him up for dinner, homework, nothing at all….From 5 until 11 he napped…Jeff carried him to the bathroom at some point and decided that Alex was down for the night and closed his bedroom door…

At 6am today there was a very distressed little boy climbing into our bed. He was losing his marbles because he missed dinner and now the sun was coming up. Alex is very rule and schedule based. The world ceases to turn for him if something isn’t complete, like a ritual, like dinner. The new day starting without him having eaten dinner is somewhat like if you made a non-PDD kid go to school sans clothing. (assuming the non-PDD child isn’t in love with their nakedness the way many in the 2-4 year old set are, of course)… It’s not right, it’s not how things are done.

So he lost it. He sat on our bed and wailed as though someone has stomped on his heart and the pain was unbearable. We had not caught on just yet, and tried to tell him that it was ok, that clearly his body needed rest more than dinner and if he was hungry we could make him some toaster waffles.

But he needed dinner.
And the sun was coming up fast.
And the screaming grew louder.
(sorry to our understanding neighbors who never complain…you have no idea how much we appreciate your kindness.)

I toasted some waffles. Alex looked at them as though they were a squirming platter of venomous snakes.

Finally, absolute brilliance struck Jeff.

He declared that it was still night in our house. He shut the shutters, dimmed the lights, he heated up a slice of pizza and called Alex to have dinner in the den. Alex still wasn’t buying it, but he was willing to listen.

Jeff jammed a few bites of pizza into Alex’s mouth. Alex calmed down and declared that hey could now have breakfast.

*sigh*

But Jeff knows that Alex is more detailed than this and this freakout could potentially drag on for the entire day, or even days. Alex requires so much structure, but the world doesn’t always cooperate. We have been here enough to understand a little of how Alex functions, even if this is one trait I do not share with him, I am his mom and I see how his breakdowns become more than mental or emotional, they edge into the physical (when he was a baby we thought that the crying it out thing was still within normal realms when he was still crying after a few hours… and then he’d vomit… that was a clue that what works for some probably wouldn’t work for us, and not because any of the parties involved were being indulgent, we had a different kid, for better and for worse…This was one of our first clues…I wish we could have interpreted it appropriately…)

Alex’s favorite “game” these days is “time machine”…He pretends that Jeff’s walk in closet is a time machine (it has a sliding pocket door, that fits Alex’s description of a time machine)… Jeff finds it funny that Alex’s time machine doesn’t actually travel through time- but it does go to the moon, to the master bedroom, and to target so we can get more Annie’s Mac n’ cheese in the family size box (yes, this is one of Alex’s gems)….

This morning, Jeff saw the opportunity…He grabbed Alex’s hand and said “no! You can’t have breakfast yet! It’s night! You just ate dinner! We must go to morning! To the time machine!”

So we all got in and Alex pressed the appropriate buttons (pretend buttons) and made the time machine sounds… When we “arrived” he opened the door and stepped out and declared “Good Morning!” and was giggly and happy, like any other morning….

Needless to say, I’m putting “time machine” on our list of tools (which I will share, dear reader, soon…promise)…

The picture on the left is a chalk/chalkboard drawing hubby did of Alex in his time machine…He also made him a “pop up”/moving parts card of the time machine for christmas… There was a home depot gift card inside for Alex, so the two of them can build a model of Alex’s time machine…

I love the two of them so much….

I hope you have a wonderful day…. Perhaps if it’s not going your way, you could try the time machine trick? :-)

Best wishes,
xo
Bek

Fixations….

14 Feb



Plumbing

Originally uploaded by CleverIndie

Alex’s most recent fixation is bathroom plumbing…
To be more precise, bathrooms have been a fixation for a long, long, long time- to the extent that I was planning on making a zagat’s type guide to public restrooms/coffeetable book with him, but then his interest waned, but it’s back more than ever…

but now it’s not just the volume of the flusher (we are constantly briefed on the loudness of various flushes in different locations)…

It’s how the plumbing actually works.

Which is great. He has declared that he will “grow into a plumber”… He is very interested in the function of plumbing and different types… My dad was in the Navy and was stationed in France and experienced a type of plumbing that was a hole in the floor and there was a tank and you flushed and the whole room “flushed”….Alex is entranced by this sort of lore…. I’m just happy that my kid and my dad can connect on something. We made a special call to my dad so he could tell Alex about the “room flusher”. I cannot even begin to describe the sheer happiness and twinkle of Alex’s whole being as he hung on to every word…

This morning he sat down with some heart shaped crayons I gave him for Valentine’s Day and he drew a public restroom….

If you click on the image it will take you to Flickr, I put notes on all of the parts….

If you don’t feel like clicking, see if you can spot some of Alex’s details:
The “rinse” holes on the underside of the rim on a “sit down potty”….The bolt that holds the toilet to the floor (I think Alex thinks that if the toilet is not bolted down it would rise up, like on a cartoon geyser). There is a urinal (“stand up potty”), urinal cake/strainer thing on the drain, a little water, flush levers, a double knob sink, faucet, and u shaped pipe/drain/trap…. Two light switches that correspond to the four lights on the ceiling….

These are the sort of details kiddo fixates on. These are the sort of details that make any conversation about any other topic virtually impossible. There is no room for anything else in his world until he exhausts all of the information and answers all of his questions on plumbing. This sort of fixation could be the thing that pushes him ahead in life and makes him an expert in whatever field he choose. It is also the sort of thing that can make introducing any other information that is presented to a five year old, at home and in school, an effort that falls short. It can be an exercise in frustration.

So we embrace it, what else can we do? But it also means that we have to present information a million different ways and we always have to relate it to plumbing. And there are some concepts which cannot readily be applied, to plumbing. But we push on….

It’s also his adherence to rules that keeps him safe- don’t touch xyz results in him having a dramatic fear of xyz. Introduce any other information about XYZ, any functional or mechanical information and you can forget any rules about “don’t touch”… He understood “don’t touch” with the raclette (table top grill thing….social food prep, like fondu, but with little pans….) until we explained that it heats up to cook the food… Then he had to touch it, and he burned his hand. (not bad, no blistering, but it was a shock to him, now he knows…)

Explain that something has a function, or some sort of mechanical feature, and he has to try it. He cannot hear “no” or understand “don’t touch”, he cannot resist the impulse to touch it and try it. We are very selective with what we introduce, as anything that is introduced with any hint of being a machine with movement and function will have to be explored fully.

Today I walked into the den where my husband and Alex were playing with a log set from kiddo’s uncle. One of the guys that came with the set had a gun.

Alex has seen guns before, on TV and in a section we did on safety. We had left, I thought, his knowledge of guns to: if you see one tell an adult, do not touch, danger, etc… When we did the online safety exercise thing they had a section of picking out the dangerous things and the things kids don’t touch. Alex thought the gun on the coffee table in the picture was a dinosaur bone and his take on it was that you never touch dinosaur bones because they could break and the museum wouldn’t be able to use them and everyone would be mad, so you never ever touch dinosaur bones. We explained that it was not a dinosaur bone but it was still a “don’t touch” and of course we let him know that his dinosaur bone thinking was spot on as well, because hey, would you want a kid with my grace handling a rare fossil? Probably not…

but today my husband was explain to him what the toy-guy was doing. He explained the mechanism the guy was handling.

The mechanism.

I’m so angry and so frustrated.

Guns are off limits. Alex does not have impulse control. He is obsessed with mechanical things and machines.

Now if he encounters a gun I am 99.9% sure that the “don’t touch, tell an adult” rule is going to fade away as curiosity gets the better of him.

He can’t resist.

We have a few firearm enthusiasts in our family, my husband and I had the conversation about guns and our child long ago. We both, at the time, agreed that education is the most important part of the safety strategy.

I confronted him about what he was explaining to Alex. He insists Alex wasn’t listening anyway. Even if Alex got one little word of “fanning the hammer” (which is what Jeff was explaining….Fans, by the way, are Alex’s other obsession, so I doubt all information really bounced off of him) I know that we can no longer trust Alex’s rule-based response to guns. I know that if he comes across a gun he will pick it up and he will play with the parts to figure out cause and effect.

I am furious and terrified.

My husband maintains that he would rather educate Alex than have him try to figure it all out when faced with a firearm. This was our original plan. But this was before Alex. Before we knew him.

I just want to know why the frick this is the only of all of our original plans that survived? Everything else changed. Every plan, every dream was rewritten or erased or replaced. There’s a book out on parenting special needs kids called “You will dream new dreams”, and I do, and we also make new plans, that are appropriate. I want to know what else has my husband not edited or rewritten, in consideration of the fact that we don’t have a regular, neurotypical kid, we have Alex.

And I don’t want to lose Alex.

Assuming Alex can use information appropriately, when it is relating to something mechanical, something with cause and effect, one of his fixations, is as erroneous as thinking that he can land a jumbojet blindfolded. I spend my days reworking our world so that Alex can thrive. I’m furious that the person whom I thought was in this with us is comfortable enough that he can forget for a moment and put my kid, OUR kid, at risk. I’m exhausted because there is no rest. There is never a moment where I can lay my head down and not think and be peaceful. Every moment is full of what I have to do. I guess I’m just jealous that my supposed partner gets to take breaks(mental and physical) and doesn’t have to worry because I’ll always be at attention and watching his back, and Alex’s.

But who watches my back, who has bothered to learn about him and is willing to accept and understand and really love him and understand what we are going through and have gone through over the past 6 years and how much more until I break completely?

I’m exhausted. I really feel like it’s just Alex and me in this world. It has been since the beginning. I am just exhausted.

Thanks for listening to my rambling…

xo
Bek

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