Tag Archives: imagination

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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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

The Reading Habit

7 Jun

Reading….

Originally uploaded by CleverGirlBek

I was reminded of this photo today when I went into boy’s bedroom to air out his bed and I uncovered his two babies -Paul (an anatomically correct boy drink and wet doll) and Emily (my “baby” from my childhood)-tucked into his bed very sweetly… While he doesn’t regularly play with dolls he is way more attached to his “buddies” (a motley bunch of stuffies that are threatening to take over his entire bed) than action figures and superhero type boy stuff… At least for now…

In this picture he had tucked the babies in (this was over a year ago)…Their bed was his toy box with cushion on top… He then put every blanket he could find on them (I think he thinks our house is cold… I think he needs to start wearing pants regularly and then judge the temperature.)…

And he read to him. The way his dad reads to him…

Very sweet and nice to see that all of the trips to the library and the eight zillion books the baldguy has read to him have made an impact….

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