Tag Archives: needs

Opportunity to bust down some barriers…

18 Jun
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Ode to Boy.

30 May

Alex
Alex

Originally uploaded by CleverIndie

Today we went to the Kindergarten graduation ceremony at Alex’s school. Alex and the rest of the pre-primary kids had prepared a song. I slept a little longer than the boys this morning, and Jeff got Alex dressed. Alex was thrilled to wear a buttondown (his favorite type of shirt) and his rockin’ tie from Toybreaker.Etsy.com.  (Alex has been doing mostly kindergarten work this year, but will be starting his official kindergarten year in August as we all agree he needs the extra time, and the nature of the program allows for this flexibility which is important for a kid like Alex who is uneven as far as development goes.)

We got to school and took our seats…Listened to the squawking of the first group of kids playing the recorder. The next group went up, and gave a little history on Beethoven and his impact on the world and on music, then they started to play…

With those first few familiar notes I looked at Alex and he looked at me and put his head on my arm, and my big boy snuggled so close to me. His eyes were sparkling, starry and happy and overwhelmed and so in the moment. Classmates were play fighting in the back of the room, parents were craning their heads to keep track of their wandering pre-schoolers, and Ode to Joy swelled through the room. And for the first time, it was like this was a moment, a song, an experience, that he was truly connected to. His mind wasn’t elsewhere, he wasn’t talking about buttons on radios, or how a siphon in a toilet works…

He sings Ode to Joy non-stop in his head (and many times aloud) from morning to night and probably even in his dreams. It’s his constant. Ode to Joy calms him and provides comfort through the million and one transitions in his day- some of those transitions are so minor to the casual onlooker, that they would never identify them as such. Everything is a transition in some way, Alex is always very aware of this. Ode to Joy is his security blanket. I know the other kids in his school don’t have their personal theme music playing in their mind 24/7/365, but they don’t need to either. Alex needs that. He identified it himself and started using it as a tool. It seems to quiet the rest of his very active mind so he can function at any level.

On some days it seems like walking, chewing gum, and trying to juggle flaming ginsu knives while translating Lewis Carroll using only a Berlitz guide, into an unfamiliar language (with a different alphabet), while someone barks random numbers and throws sand at you, all at the same time.

To decompress after school and on weekends and holidays, Alex stands in front of his radio and watches the numbers and listens to the 10 different versions of Ode to Joy we loaded onto the ipod for him. Occasionally he pops out of his room to declare something Ode to Joy or plumbing related, but mostly he needs this decompression, the radio supplies the song so the part of his brain that has it on mental repeat during regular daily functioning can rest.

But today, once they started to play the song, he was in the moment.

His brilliant and busy brain and the outside world converged in the space of that room, perched upon a folding plastic chair.

He was at peace for a moment, so connected. So was I. My brain is usually working on how to help him and the things I have to do, there is no down time.

But in that short yet gigantic moment today, both of us were present, for the first time in forever.

And his face and eyes, when they met mine, told me that he was overwhelmed that the world had finally connected with him.

Checking reflexes…

22 Feb

Today I was talking to Jeff about some spine info I found on the internet.  I haven’t been googling about my shoulder, and my arm being numb and shaky. I was going to do that after the MRI and it has gotten somewhat intermittant rather than constant and constantly worsening… But it’s still there…

And my legs are weak.

So I know something is going on.  So I googled.  I read aloud to Jeff.

And Alex heard me.

He comes in to the bedroom, smiles and me and

“BAM!”

Slams my left knee cap with his solid hardwood toy tool bench hammer.

Shocked the daylights out of me.

He told me “like at the doctors”

I replied “they use a rubber hammer!”

Jeff came to see what the fuss was about and I lost it.  I just cried and cried and cried, while I really wanted to laugh but the tears just kept coming.  It was funny, by itself it’s funny…..But my body does not agree…  My back hurts, it feels like a stack of cement blocks grinding against each other, whittling themselves down to nothing.  It’s not just pain, it’s that nails on chalkboard, things not moving right feeling that won’t quit.  My right arm isn’t working right, it’s numb or all pins and needles and the intention tremor is worse. And now my legs feel like I just ran a marathon and went on a bar crawl- sore and rubbery, wobbly.

Blech.

Kiddo feels so bad about the hammer thing.  He was trying to help. He is always trying to help me feel better.  And that makes me feel so terrible.  I want him to focus on being a kid, I want to be able to enjoy his childhood and his life and I really want to participate.

I hope this is just some temporary swelling thing and nothing that requires anything else to drag the last of my energy and my strength away from me.

Will update soon…

xo

b

Pop-up Love!

18 Feb

Valentine’s gift

Originally uploaded by CleverIndie

Alex and Jeff made me a pop-up book for Valentine’s Day!

I can only imagine the amount of effort both of them had to conjure up to complete this treasure…. They both worked so hard…

Mama & Me

This is Mama & Me. We do fun stuff together. (the pulltab makes us stir the pot on the stove together)....

My Mama is brave.

My Mama is brave.

My Mama is smart. (pulltab makes a lightbulb appear over my head)

My Mama is smart. (pulltab makes a lightbulb appear over my head)

She gives hugs and kisses.

She gives hugs and kisses.

Mama is the best mama in the world!

Mama is the best mama in the world!

copyright Alex 2009

copyright Alex 2009

Am I the luckiest mama in the world? I think I must be!

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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