Monday, January 23, 2012

He likes the soup!

Gus at soup Saturday, yesterday and today!!!
My finicky eater of a son. ATE. SOUP. WITHOUT. COMPLAINT. THREE. DAYS. IN. A. ROW.
Partly we owe a big thanks to Pixar's Ratatouille, which prominently features soup and which fascinates Gus as few things do. He has become knowledgeable of things in the kitchen and sometimes even helps me "cook." That's why I wanted to shout (with a fake French accent) "He likes the soup! like the waiter character does not too long into the movie.
I don't know how many 4-years-old truly enjoy soup, but to me that's a sign that despite his fondness for BEIGE foods, Gus could still become a gourmand, someday.
We get so stuck in Gus' preferred tracks sometimes, that I forget, how pliable that bright little mind of his really is. And that despite the shrieks and complaints I should never get tired of plying away.
Lately, he has amazed me with his willingness to forge ahead and simply try something, even when it makes little sense to him.

First pills. Then carrot sticks. Now soup.
What's next?
I'm thinking fish sticks.
Yep. I'm brave, too.

Monday, January 9, 2012

"Hey Boo"

"Hey Boo"
That iconic one-liner from Harper Lee's story-telling triumph "To Kill A Mockingbird" has been rattling around my brain for a few days. The reason being that Jacob and I treated ourselves to watching a documentary on Lee (we like to geek out with documentaries on Netflix and Hulu) the person behind the story of Scout, a Southern smart-allecky tomboy of a girl that has been loved by generations of people around the globe.
The documentary made the point that most of Scout, could be found in Lee and that Atticus was fashioned closely after Lee's father, a respected lawyer in a small town in Alabama, where she grew up.
Most writers, at some point, write autobiographical. It makes sense to write what you know. What you experience you know and perceive to be true. Most writers strive to write truth.

What fascinates me, however, is that simple phrase "hey Boo". Teased out in the documentary, as a real heart-cincher, documents the moment Scout simply embraces the much maligned and demonized Boo Riddley, who happens to be different from everyone else in town and who lives in the scariest house in town.

Scout, no doubt following the lead of her father, Atticus, seems to see no need to adjust her behavior, just because Boo is different. Her openess, her sincerety suffer no hesitation. She wasn't just raised right, she was raised by someone, who himself, suffers no hesitation in embracing any person as long as they haven't done anything to deserve different.

It's made me think a lot about how we behave ourselves around those who are different. Just because I'm the mother of a child, who is different, doesn't make me an authority on how to do it right. I still stumble every time I serve a disabled person in the restaurant I work at. Wheelchairs, oxygen tanks, drool, blank faces, flailing limbs, you name it, it stops all of us dead in our tracks. We know the script to follow when the interaction is between what we consider "normals" but what do you do when there is a "different" thrown by chance? I, myself, try hard to not adjust my voice, speak normal, maybe a bit slower, but not much. Lean in closer if I can and see it be welcomed. Get down to make eye contact. Smile, but not too hard. Be friendly, be open, be patient. All the while appearing completely at ease - it takes an Oscar or two do pull that off. Most often I fall short of what I'd like to see. My "hey Boo" moments are too few, too far in between.
Funny thing too. I believe that we pass that fakeness, that discomfort on to our kids - without delay. I know we like to believe that little kids are color-blind and disability-blind, but I disagree. I have observed children as little as 2 1/2 respond to being around a person who is different and they comment on it and adjust themselves, in an uncanny kid-version of what we adults do.
"That is a funny girl" a little boy I know, commented when a young woman, who has Downs Syndrome and likely several other disabilities, got in the pool with us. He wouldn't let her out of his eyes. He craned his neck to make sure he had a clear view of her. At the same time he made sure he wasn't too close to her.
Another little girl I know, likes to tell me that Gus is "boring" because "he doesn't talk" she gets very short with him and bellows all her commands at him. Mind you these are little people, they will grow up and learn to behave "right" around the "different" ones, but deep inside that sensibility for "otherness" can't be erased. I wonder if they grow up always feeling discomfort around those who don't follow the script we "normals" write.
And then there is Gus. Not only is he different and cares nothing that others find him different and difficult. He embraced those that are different. I take no credit for raising him right - God knows I'm not a great role model in that respect - but he loves the little girl with Downs Syndrome that appears in his Sesame Street movie. She is a clear favorite of his for her wide smile after she finally succeeds in blowing bubbles. Likewise, the young woman at the pool, is no different to him than anyone else splashing around in that body of water. He regularly gets tangled up with her, swims into her way and has even playfully splashed her - eliciting disgruntled grunts and glares from her. He laughs with delight, which confuses her. I don't think he can tell that she is different, or more different than he is - at least in the hyarchy of "normalness"
He seems to have no sense for that and I love that in him.
My hope is that he can be that kid that says "hey Boo" more often than me, more convincingly to those who makes everyone else uncomfortable.
Wouldn't that be wonderful?


"That's remarkable" our retired neighbor, who just happens to be a nose, ear, throat specialist, remarked after giving Gus a quicky ear examinaton and finding one ear in the early stages of an infection.

What he had just witnessed was Gus - like the pill-popping pro that he is now - matter of factly taking a antibotic pill from the good doctor's hand, putting it in his mouth and swallowing it with nary a frown. A few sips of water and he was off to explore a strange house, we had just begged our way into in the early evening hours of Sunday.

We are so blessed to live in a small community, where knowing people puts you in touch with a sturdy network of family and friends, who have all kinds of talents, services and goods to offer.

Yesterday, after Gus without a doubt communicated that his right ear was hurting,(I take back my comment made in an earlier post about Gus' disinterest to communicate pain. He is just like his Dad, when the pain is bad, he will let you know, otherwise there is little use talking about it) I felt panic rising in my throat. Faced with a floppy child in clear pain and the fact that it was Sunday 6 p.m., I suddenly remembered that one of our close friend's father-in-law is a retired ear, nose, throat doctor, who lives just up the street. Two quick calls and with typical Southern genteelness we were invited into a home, where Dr. Fred with reassurance and quick reflexes made the exam a cinch. Gus did great and didn't flinch - much.

Then things got quickly better. I felt so relieved to know that my maternal instincts were right on - for once. Not only did Dr. Fred compliment us on coming quick ("I rarely see an infection this early") he also lauded Gus on his great exam manners and was downright amazed when it came to dispensing the necessary antibiotic to turn the infection around quick.

If you are like me - the mother of a child with special needs - hearing phrases like "that's remarkable" said in connection with your child are rare. Yes, people try to make up for all those perceived delays, by complimenting Gus on his looks, which I gladly take, or remarking on him being "special" or his overall cuteness, which at the age of 4 is starting to sound just a bit patronizing, but whatever...

To hear for once that Gus is really good as something (even if it is pill-popping) is simply balm on my sore soul. It goes to illustrate perfectly how Gus works. While there is an entire industry focusing on all the berry/grape/cherry flavors that will make modern pharmaceuticals palatable to young children, my child prefers a bitter straight-forward pill. He doesn't want to be teased or apeased, he wants to face the danger (or in this case, bad taste) head on and get it over with. I can respect that.

Yep. Different, special and cute, but not without reason. If I could only imagine having a brain that translates everything just a bit different from what everyone else sees, I would be one cranky customer, Gus on the other hand, does most things with much openess, little apprehension and an amazing amount of courage.
And yes, he slept great without a fever and is having a great day today. He even ate, which after 3 days of fevers and fasting is a huge relief.
We are learning so much during this time of illness. Jacob and I are learning about Gus, Gus is learning about us and, most importantly, he is learning something valuable about himself. He can most anything, even if he doesn't like it.
I'm so proud of my little guy.
He is truly remarkable. Even if it is often hard to gauge.

Friday, January 6, 2012

Sick Puppy

Unfortunately - though not entirely unexpected - Gus has caught my cold bug (a nasty one complete with a hacking cough and, in his case, a fever) so since yesterday afternoon, we've had a floppy, hot, pink-cheeked little buddy on our hands, though he has been a champ and downright stoic about his discomfort.

After a trying night that found me stuffing vomit-soiled towels and my robe into the washer at what I thought was 6 a.m., but turned out to be 12:30 a.m., we headed to the doctor this morning to make sure, Gus wasn't in dire straits - like many children on the spectrum, he cannot be completely believed when asked how he is feeling, Gus doesn't ever feel pitiful, or if he does, he isn't about to share it.

His lungs, ears and belly are clear and we are glad for that. But I'm especially proud of Gus for being such a good kid at the doctor's. It's a place he has disliked since he was a wee little one, and more recently since his diagnosis with Autism, he has shown a pronounced phobia for all things medical - we are very fortunate to have an in general very healthy kid.

So today, despite a bit of anxiety, Gus calmed down quickly and with the help of one of his German "Jakob" books (where Jakob goes to the doctor) he was able to participate and help Dr. Ron with his exam. I was about to burst with pride, when he opened his mouth wide, looked into the light, let his ears be looked at and his lungs listened to. I couldn't believe he would be that good, but he was, fever non-withstanding.

He was, however, very happy to exit the examination room and go look at the adorable live turtles in the waiting room - all with as much fanfare and waving like a war hero at the nurses as we went.

We also discovered with this bout of ickiness, that Gus - drum roll here - unlike most of his age group, can take a simple unadorned tylenol pill, while all the fancy, flavored suspensions make him fall to pieces. We have forcefully held him to the kitchen floor while one of us inserted a syringe with suspension into this mouth, only to see most of it come back up, but tonight, just an hour ago, I handed Gus a half a tylenol and a 3/4 benadryl and he swallowed them very matter of factly with a sip of water after each.

Like I said, I'm very proud of him.
And even a miserable day, can be a day to give thanks.

Tuesday, January 3, 2012

Momma is Sick

"Momma is sick.
What should we do?
The thermometer reads 102."

That's the opening paragraph of one of Gus' current favorite books and since yesterday, that books has become the refrain of our lives. I am sick as a dog, battling - unsuccessfully - some mean bug, that I probably picked up somewhere during our trip back from the holidays. To make a long list of ailments short: I feel crappy and not like myself - all on about 4 hours of sleep for the last two nights.

Gus has been wonderfully understanding. Yesterday we had Daddy for reinforcement, but today outside of Tomatis therapy (thank goodness, he'll get to play with his favorite OT Anna for 2 hours) Gus will be subject to bad mothering, as I most likely will want to lie on the couch, feel bad for myself and do little.

To make matters more interesting, we got a dusting of snow and temperatures have plunged into the 20s - a real icy snow day, one we would normally take advantage of with a lengthy romp around the elements.

But today I want to sit and drink hot tea. Drink hot tea and sit. Poor Gus, the best I think I can do, is let him out in the backyard and watch from the kitchen...

Other than that, he will likely exceed his 1 hour of movies - by about 5 hours or so...

Like I said I feel bad.

Monday, January 2, 2012

Being Non-sensical

Gus loves to speak non-sense, meaning he either uses words out of context or he makes up words. Being well versed in echolalia (repetition of memorized phrases, something many children with Autism are prone to do), Gus loves to be creative with the words he is comfortable with and furthermore incorporate words he isn't sure about (hence the made-up words, that he believes have meaning).
So the possibilities are endless and entertaining.

"I phew on Momma"
"I musky on Momma"
"I'm Lakshme Seng" (we listen to a lot of NPR)
"I'm Jack Spears" (again a News Broadcaster on NPR)

This morning however, he made me laugh with a brand-new one
"I Nobel-Nordisk on Momma" (This is a product that seems to be doing a lot of underwriting on NPR)

Quite creative with his words, if you ask me.

Sunday, January 1, 2012

A Good Day

So far so good.
2012 started out good for Gus and me.
We had a solo day (meaning husband/daddy Jacob is on a 24-hour shift away) and we kept it simple and easy, wearing comfy clothes and doing nothing we didn't want to do.
We met some very dear friends for coffee and Gus was being as outgoing and friendly as he can be - truly he was working at the very margin of what's comfortable for him - and he seemed to enjoy himself, playing even a bit for the adoring crowd.
It's moments like that, that all the hard work, all the patience, all the thinking in tiny minute details and then breaking it down some more, pay off. It's the moments when I see that my child will have a part in this world, too.

Today was a good day. I'm very grateful for days like today.
That's all I have to say today.