Friends

 

I've written on the subject of friends before and like many before me I'm mining said subject for nothing new but the known treasure - it's life-sustaining. My friends (the big people in this picture) make me laugh and make me think, they cry with me, they hug me, pat me, pray for me, run with me, watch movies with me, hike with me, splash in the pool with me and yoga with me. When nothing else seems to work, they pour me drinks, drink lattes with me or simply sit at my kitchen table and listen.
I love them. I don't know where I would be without them.
I don't want to know, where I would be without them.
Friends. Life's only true currency of wealth.

 

As for Gus. Friends is a slightly more complex subject. He has an idea of what friendship is. He wants it. He has a single friend (at least in his mind) and maybe a dozen more, who - when prodded by their mothers - will acknowledge him as a friend, though I'm sure he is not at the top of anyone's list for favorite playdate.
So for now, Gus is drawn to books where friends speak to each other, he wants the language of what one says to a friend and what it is one does with a friend. This is a hard one to teach a child, innately struggling with anything relational and anything so fickle and unpredictable as human relationships.
I watch him when he recites what he deems are the important lines on the subject of friends to himself. I comfort him when cries when his one friend, leaves too quickly or doesn't come home with us after the pool. He is so excited and happy when he "plays" with his friends, say on the trampoline or in another physical-no-words-needed activity.
I know he wants to be a friend and - if I can help it - he will learn how to make and keep a friend.
Someday.

Feel the Support

A week ago tomorrow, Jacob and I (and Gus, because they provided kid care) went to our first ever Parent Support Group. I went with a heavy heart, because somewhere in the two years since we got Gus' diagnosis, I have made that step a big one in my head - the moment I would admit that I needed support away from the real world - the world I so dearly love and want to be part of, even if that is increasingly becoming more difficult, as Gus' way of being is making him less and less popular for playmates and get-togethers.
The group was comfortable - against my expectations - a small cross-section of parents who were brave, determined, smart, desperate and above all eternally loving. We may not be able to explain and understand our children, but we love them. Simple as that.
Jacob and the only other father in the room, quickly began an aside conversation and I felt like, even if I didn't contribute anything to the group, I brought these two men together, they seemed comfortable in their whispered conversation.
I did take some comfort away from this group, mainly that I'm not alone. That I'm not failing as a mother and mostly that whatever causes Gus to be the way he is, is not within my control (I may have caused it, but no one can tell me - yet - what it is that I've done).
These mothers were varied in everything: Age, income, IQ, everything.
If you could see a group of parents affected by autism, it would give you a good sense of what makes autism so puzzling: We are so random and we have so few things consistenly in common and that's how children with autism are too. Not a one like the next one. Each with his/her own complex sets of likes/dislikes and almost no one can say anything with any authority about autism as a whole.
Other than that it is here to stay and confounding in every way.

For some reason. Where I am at right now. That's a comfort to know.
I'm going back to the next session again. Because each one of these parents seemed happy that we were there. I hope Jacob will come again, too. I know for a fact that the other Dad sure would like it.

I guess that is what support is.

He likes the soup!

Gus at soup Saturday, yesterday and today!!!
Amazing!!!
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.

"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?

Remarkable

"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.

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.

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.