Tag Archives: fixation

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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Today.

28 Jan

We see glimmers of what my brain is calling “interactive Alex” today…

But not much, not as much as has become the norm for our family.

Alex tries his hand in imaginative play on occasion, but he is pretending to pretend if that makes sense. He checks back every couple of minutes “it’s just pretend”  if we join him in pretending, to encourage him to explore, he often informs us “It’s just pretend Mama” or “Daddy, we are pretending” and need reassurance that the world hasn’t actually changed into the world we are pretending and that all of us haven’t lost our marbles.

Yesterday evening, he found a pebble that he had found at school before the winter break.  We think it is a pebble. We kind of hope it is a pebble and not some petrified parking lot weirdness he picked up between Christmas carols with the rest of his school, where the kids were outnumbered by parents and cameras.

He announced “This is Fred” from the other room.

“He is my best friend” (I resisted the whole “I thought I was your best friend?!?!” thing, not the time or place).

He was holding him sweetly in his little cupped palm.  I waited for him to inform me “I’m pretending. Fred is just a pebble. Pebbles aren’t friends, that’s silly. *insert artificial, forced laughter here*”

But he didn’t.  I dipped a toe into the pool to test the imaginative waters.

“It’s almost bedtime, does Fred have a bed?”

“Oh no! Where will Fred sleep?” he quietly rubs Fred with his finger and whispers into his cupped hand, soothing Fred.

We locate the origami box we made together (together = me: folder + Alex: telling me I’m doing it wrong even though he’s never done origami in his life and he picked the paper- a sheet of orange for him, a sheet of blue for me).  Alex takes the squished origami star (from a lady in hawaii who sells them on etsy by the bag) from it’s station near his piggy bank and declared it to be Fred’s pillow.  I look for a blanket.  Alex was definitely not down with using easter grass as a mattress, but he opted to use a wad of it as a blanket, for Fred.

It was then determined that Fred really wasn’t tired, but he wanted dinner.  Apparently he eats minerals.

But he had no place to sit. I found the funny tin from the Wasabi gumballs (gross. not worth the novelty.) and a small lipbalm slide tin.  Alex declared the smaller tin to be the couch, the lid is Fred’s widescreen HDTV (Alex is precise about the names of things), the larger tin is Fred’s Den.

Anyway, at this point we are probably 30 minutes into the Fred thing. It’s a record.

The evening continues and Alex tucks him into bed, and leaves the box near the phone in the kitchen and then decides that Daddy will probably not mess with Fred and it’s ok to leave Fred on the nightstand next to Daddy’s side of the bed.

Alex was spending the night in the big bed with us, for extra snuggles and he wanted to keep an eye on us (and us on him, but don’t tell him that, he’ll deny it).

Still, no announcement of the happening of any pretending…

I was very, very worried.

He woke up this morning, mid-sentence.

“Galileo CD is not in the CD book. Baby Galileo has dark blue.”

I am used to this, we lived like this since  he started talking. He didn’t even look at me. He climbed over me and onto the floor.

“Good morning Fred” He removed the tiny pebble from it’s box and handed him to me

“Good morning Fred, welcome to your day! It’s going to be a good day!” Alex seemed happy about this.

He turned toward me but didn’t look at my face.

“And then we will put the CD in the Philips CD Player and I can hear it.”

He turned around a walked out the door.  Not his enthusiastic little tippy-toe run. He walked, steady.

He continued to describe the CD. I followed him and asked questions.  I suggested he go to the potty and I would look for the CD in the CD book.

It isn’t in the book. I started having that same old panic I haven’t seen in awhile.  Alex fixates. If I can’t find the CD we are going to hear about the CD for weeks on end.  He will not be able to function until the CD reappears.

He puts Fred on the bathroom counter and I tell him that I can’t find the CD, but I will see if we have it in itunes.

Thankfully, it seems that some flexibility has remained and he does not protest. But he does follow me around telling me about the details of the CD and singing some of the songs (he sings the notes to classical music, so I’m getting words and soundbites as he tries to reach me fully, so I understand the exact thing he is looking for. Yes I realize this is a huge thing in regards to communication, but there is so much to this that isn’t quite right that I can’t quite explain it effectively, it needs to be experienced to be understood).

Through process of elimination I figure that the Baby Einstein Galileo CD is probably the lullaby CD (there are a few shared songs), so I grab a blue cd and burn it.

He is so excited when I tell him what I am doing.  We hear the computer’s whirring stop and we go to get the CD.  I take it out and hand it to him.  His eyes are twinkly and dreamy, he is smiling, his voice squeaks “You made this for me!” and then he looks at it.

It is not the Baby Galileo CD. It is a blank blue metallic CD that I burned for him.  It does not look like the Baby Galileo CD that is taunting him from memory.

He tells me it doesn’t have the words on it.

I offer to write in the name of the CD for him.  He agrees this is a good plan.

I write the name of the CD for him and his face falls, he is getting distressed that he can’t reach me- that I can’t understand him and magically duplicate the CD-including the artwork, on demand. He thinks I don’t understand.  I do understand him, so very well, but this rigidity of thinking won’t let us meet anywhere that a solution can be found.

My sugar drops at this point and I tell him “cd from the computer or no cd”

“No CD”

I make us breakfast and we eat breakfast in bed.

And he remembers Fred.

Who is now missing.

And Alex is very upset and while he has returned to his rigid thoughts and lack of flexibility, his imagination (he isn’t pretending to pretend to blend in like he often does) is a little wilder…

I just want to hold him until everything is calm and bright again.

I want to make emergency appointments with all of the specialists and his pediatrician, not because he needs them today, but so I can say “See, this is what it was like before we learned that he has different needs!  See!  We aren’t crazy dumb parents.  This is real. Now help us and help him!”

But Alex needs hugs and he needs to sing the notes to Ode to Joy (oddly, in a Tom Waits “voice” today…) over and over and over and over and over and over and over again.

My ears are ringing, my eyes are stinging, I am exhausted and angry and sad and frustrated.

Oh how I wish there were a planet just for us.

How I wish I hadn’t taken the progress for granted the little bit I did…Did I jinx it yesterday when Jeff said “He’s doing so well all of a sudden” (while he was at school) and I tried to quiet my brain from the thought “ok, so what is going to f it up?”  Life has been that way, Jeff calls it Big Luck- amazing fortune followed by dramatic misfortune…. This is no exception…

How I wish I could express the differences without sounding as though his differences (that we love as part of him) are terrible or not of consequence or what some folks would call normal as components, but in a specific combination is means my kid needs extra care in all parts of his day.

It’s hard to paint the picture because I haven’t found the proper brush just yet….

Hugs all around,

xo

Bek

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