Tag Archives: flexibility

Islands in the stream….

18 May

Islands in the stream….

Originally uploaded by CleverIndie

That is what we are…

Anyway… Where was I…

Kiddo is a picky eater- he’ll try most anything, but he’s a creature of habit and has sensory issues- so he’s very specific about what he likes and what he loathes…. (and if he changes his mind he will admit nothing!)…

So, he likes everything bagels, corn, and cheese….

So I popped the bagel (with some shredded cheese) in the Rocket Grill and it squished the daylights out of it! So I put it on a plate, put two little morsels of grilled (rocket grilled, baby!) chicken “sunning” on the Isle of Bagel…Of course, the sun is powerful (sun=corn in nifty little pinch bowls…pinch bowls are a lifesaver when you have a kid who cannot handle different foods even seeing each other, never mind *gasp* touching…)

The broccoli is a unique specimen of palm, found only on the Isle of Bagel. By the way, the stars in the blue sea are starfish, and that orange slice toward the back is the mainland (ok, ok, it’s one of those make-a-plate things and it’s an orange moon and a starry night sky)…

So, why does food need this backstory?

Because my kiddo is *that* detailed. He is also very rules based, so artistic presentations of food challenges his deeply ingrained meal & food rules in a fun and somewhat novel way. It’s fun, he’ll argue with me that the palm tree is really broccoli, if he’s tired I know better than to present anything with even .05% whimsy or all hell will break loose. We are working hard to soften some of his rules and his rigidity as living in the world with other people often requires compromise and a little grace and we are getting there, albeit very slowly. How slowly? He’s rules based, he has no gray area, he can’t generalize, so if a scenario is not repeated exactly (ie temperature, light, people present, etc…) he can’t apply the new rule or the exception to the rule, or even withdraw a generalization from his brain/bank to really understand or function reliably.

If you don’t know any kids who are this rigid- imagine potty training a child at home and then take them to grandma’s- most kids can apply their at home potty training to other locations (sometimes with a little urging or reminder and a little modification on everyone’s part)- they can ignore the variables-to a point- and find the constants (the potty, having to pee, etc). Alex can’t ignore the variables so he can see the constants clearly. In the potty training scenario, if you switch up the variables from his home/training base, it’s like he has never seen a toilet in his life and you have to start from square one. (and this isn’t a far off analogy- I was on the verge of making a public restroom scrapbook for him so we could study up before leaving the house- and so we could focus on the visual similarities in the comfort of our home). Is everything this intricate and challenging? Yes. It isn’t getting easier as time goes on, but it is changing, so there is no such thing as boredom. And in all this I can’t stop marveling at the details he notices- it’s like wearing reading glasses- he can see the words clearly but all else disappears…It’s like he can read the words and get sucked into the story but if you ask him about the physical book he has no idea what you are talking about… Raising Alex has made us appreciate the intricacies of thought and reasoning and creativity. Ok, now where was I? :-)

Last night he was in a good mood. He let me explain the food to him. He announced “I like my food plain” and I countered with “it is very plain, I just put it on your plate a little differently”. He hesitated and quickly gobbled up the sun/corn…

I showed him how he can pull a little bit off of the chicken to just taste it (chewing meat type stuff makes him gag or hurl- depending on how far he is into the meal)… And he tasted it and then even ate another little piece without our urging.

Unfortunately, the rocket grill turned the cheese bagel into a crispy, tasty grilled panini sort of a thing, and it was too dense for him to chew (without again gagging…)…

But I feel triumphant… The chicken was no longer stranded as it swam into his mouth and down to his tummy…

Alex declared that it was turning to night as he gobbled up the corn (thereby making the “sun” go down)…

He wouldn’t try the broccoli until I remembered the key to a 5 year old boy’s laughter. He wouldn’t buy the tree devouring giant scenario and then I remembered…

I whispered to him that broccoli magically transforms into horrific, near deadly, rank gas when you eat it.

He giggled and took a bite…

Victory is mine.

By the way, I just received a copy of the Sneaky Chef cookbook in the mail… I’ll comb through it with an eye toward sensory defensiveness (particularly my kiddo’s, but there seem to be a few people cooking for kids like Alex and more typically developing kids seem to have many of the same food quirks) and let you know if it’s worth the purchase… I think kids can learn the joy of healthy foods without hiding them, but when dealing with sensory issues sometimes you have to go behind the scenes, hide the good stuff, and reveal it slowly… And sometimes you have to play with the food.

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

I love you with all of my…

22 Jan

I always wanted to make sure my child would know that I love all of him.  There are no conditions on my love for him.

I did not have that sense when I was growing up and I was told more than once that the parental love I was receiving was completely and utterly conditional. This is not an assumption, on my part, but a spoken fact. “My love for you is not unconditional”.

Anyway, I love my little boy unconditionally.

When I was pregnant with Alex, we had an ultrasound that indicated almost every marker for various chromosomal abnormalities, some of which are incompatible with life.

While we waited the three long weeks for the results of the amnio we sat and we thought. I cried. I think that almost six years later I am still a little dehydrated from those three weeks.  I couldn’t speak to anyone, not even my husband, Alex’s dad.  I did speak to my mother before the fear and sadness really sunk into my bones, and while I explained and broke down, I was called stupid and told that the only option was to terminate the pregnancy and that I shouldn’t be cruel, I should do it immediately and not wait for the amnio results. She ordered me to stop crying because the chromosomal abnormalities were my fault (unconfirmed abnormalities at this point, unrelated to any available family history or parental health conditions) and that I should accept my role as parent and terminate rather than make this child suffer further.

Between the tears, and the long naps, and the anger, I did some research.  This time period really defined me- the mom.  Everyone hopes and everyone dreams and most prepare for a healthy, perfect baby.  We all know that doesn’t always happen.  We all know that the best laid plans are frequently rerouted, rewritten, torn up completely and replaced by newer dreams that are sometimes shinier in very hidden, and very arduous ways.  This was when I learned that love doesn’t mean caring for someone in health only, which is a lesson I had learned first-hand years before, but it took this to understand the enormity of become a parent, the hopefully never-ending-ness of it.  And I learned that from both sides of the loved one and caregiver relationship during those few months, and since, in sometimes joyful and occasionally heart-smashing ways. I have learned to pick up the smashed pieces and reconnect them in new ways, a crazed mosaic of hopes, dreams, and love.

I realized that my parents were the one who could not accept damaged goods, damaged people.  I realized that my ability to love was not destroyed by the love that was conditionally given and taken during my 27 years (at that time).  It was then that the tears dried up (briefly, I am an emotional gal) , I pulled on my fleece slippers (my ankles were swollen, I couldn’t wear my combat boots or my ass kicking heels), and we figured out our plans. We figured out our formulas, our conditions, for how we would handle the information that the amnio would return to us.  It had everything to do with unconditional love and respect.

In a few months that revelation will reach it’s 6th anniversary.  The scare, the waiting, the distress, the crash course in everything from DNA to femur length to a parent’s love for their child, was an accident.  It was a terrible accident, due entirely to a scheduling error, as the test that set off the need for the amnio, and the horrible waiting, was scheduled too early.   I am grateful, though, that we were forced to define the why of our desire to become parents.  That ‘why’ still guides me when trying to determine our next step in helping Alex and helping our family, it is my personal mission statement, my grand goal for my parenting of Alex (which I will share in another entry, at another time).

Everyone says, before they have kids, that they will parent differently… I’ll never this, and I’ll never do that… The errors of my parents, so clear in my current year, are grand and horrible and shocking. I know I will and have already made mistakes that perhaps Alex will remember or only notice when he is in his thirties. But my hope is that he will know that I am human, and flawed, but that everything I did, I did with unconditional love for him, all of him.  I will never allow a day to pass without letting my kid know that I love him. No matter what.  I will never judge him based on what he cannot do, or punish him for his quirks, or demand that he behave more like so-and-so’s child (who is not Alex, not in any physical, cognitive, or emotional way).  I will provide the encouragement and support that he will try without fearing failure to such a paralyzing extent that he cannot try, so that he will have opportunity to succeed (can’t have one without the potential for the other).

Ok, onto the picture of the day…. With his PDD/Asperger’s, Alex is fairly inflexible regarding many things- word usage is a big one.

I have always told him, “I love you with all of my heart, all of my soul, and all of my brains too”. He giggles at this and replies “Brains!” in a way that is a little unnerving in a darkened bedtime room, coming from a kid who has never even seen anything zombie related (although we do have the Zombie Survival Guide, which was one of the funniest and coolest baby gifts from a dear friend. Thanks Ig!).  A little over a year ago I started replacing “brains” with other words, I do this sometimes to see if he is paying attention, and also to show him that a little flexibility can be funny and sweet and not distressing.  It’s best to do this sort of thing when he’s all blissed out on bedtime stories, lullabies, and good night kisses.

“….and all of my cranes too”

“…and all of my trains too”

“…and all of my drains too”

And he has always corrected me.

After school today, he played with his old Brio trains for a long time (so long that I went to check on him and his dad, as in our home “don’t worry unless you don’t hear anything” is part of our parental code)…

I had retired to the bedroom with my laptop and some tea and was typing away when I saw him at the door.

Trains

He had an armful of trains.

I put the laptop aside and he dropped a pile of trains on the bed with me.

“Mama,” he said “I love you with all of my trains.”

He was so proud and so happy. He is so literal and wonderful.  I was trying to help him and really he found a way to meet me in my goofiness.  In my heart I know he is still protesting my playful use of incorrect words and terminology, but that he ran with it, for just a moment, and put his own special signature on it.  And that gives me hope and strength and a warm, happy heart.

At the end of the day, it’s not about what we don’t have or about a loss of dreams.

It’s about the heart, the soul, the brains, and most definitely trains.

xo

Bek

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