J-Bear and Me

learning to navigate the world, j-bear style

Tag: jbear being jbear (page 2 of 2)

Yeah

Little bear has a new ‘thing’. It”s actually a very good thing that did not become a thing until he saw the strong reaction it got.

J is still recovering from his cold. This means he has occasional coughing fits. When he has one, I generally ask “hey, are you alright?” after he’s done. It used to be that the question would go unanswered but he might look my way or just generally putter around as per the usual, showing me that he was indeed okay. Sometimes I have to use this to distract him from the temptation to try forcing a gag that won’t work. Yeah, that’s another thing for another day.

Yesterday this all happened while he was standing across the room and as the coughing calmed, I asked “are you okay?”. He looked directly at me, a rare occurrence in and of itself, and nodded stiffly then said “yeah”. Clearly. With meaning and intention.

I was stunned.

Now, as I’ve said before, J is not a silent kid. He babbles a lot and is echolalic, meaning repetition is king in his language. His skills in repeating words have exploded in the past months, enough that one must watch what they say around him. The words come out most when he’s in a place he is secure and comfortable, so I hear them all. It’s not often he is asked a question and gives a direct, precise answer though. It is quite, quite rare.

So of course I gushed and teared up and wrote on Facebook about the event.

Now, never ever let non-verbal fool you. Never let it be thought that J doesn’t catch ever nuance of what’s going on in the world around him. Why? Because wouldn’t you know it, now every time I ask if he’s okay he automatically crows “yeah!” in search of that big, happy reaction. There’s snot pouring down his face and he’s hollering that he’s just fine.

We have some learning to do, but it’s going in the right direction so yeah…We’re alright.

Fishy Face

I had a totally brilliant idea for a post as I was falling asleep last night and of course I completely forget what I was going to write about. I’m a genius like that.

J has been stretching his acting skills the past few days. He works up this convincing to strangers but absolutely unconvincing to those who see him daily fake crying business. Once in a while there’s even fake tears that go with it, it’s pretty impressive..ly bad. Like, really bad. He’s one of the worst actors on the planet as he is blessed/cursed to have a face like glass. A poker player he shall never be, that is for sure.

One of the sure ways I can usually bring him back from the depths of his threenage angst is to make a fish face. You suck your lips in and look a total fool pretending to be a fish and all that.

Only J thinks fish faces = kissy faces. He turns around immediately to come over and get a kiss. He also finds it to be the funniest thing ever. If you ask for a kiss otherwise he either turns his cheek to you in offer for one or he makes a loud smacking noise from a distance. If I bust out the fish face though he’s Captain Kissabug.

And it’s hilarious.

The first thing strangers seem to believe when I mention J has autism is that he is cold and distant. This is such a dreadful stereotype. Sensory input on any level is a different animal to a person with autism than it is to a person without it but that doesn’t mean they do not crave affection. This does not mean they are not warm and giving. It just translates in a manner we might not expect and sometimes, as in the case of fishy face, in a manner most delightful. My son is far from cold and distant. In fact, he’s quite the snugglebug to those he feels most comfortable around.

I wonder how old he’ll be before fishy faces are just not the done thing. I hope it’s not anytime soon, it’s too cute to wish it away.

The Stages of Coping with Casts by J-bear

This is how this week has gone with J in terms of him getting used to having his (pretty purple) cast on his arm. Thoughts transcribed/guessed at by me obviously:

Stage 1: Anger

“This man is putting a thing on my arm. My arm hurts. HE IS PUTTING STUFF ON MY ARM. THE WORLD SHALL KNOW MY WRATH!”

Stage 2: Denial/Ignoring

The arm hangs limp and heavy at his side. “If I do not move it, this abhorrent thing is not really there.”

Stage 3: Frustration

“I WILL SWING THIS WILDLY TIL I AM COMFORTABLE”. Beware of accompanying flailing, especially while he is trying to sleep.

Stage 4: Indignant Acceptance

“If I chew on it mom will drop whatever she’s doing and come help me, so I will take advantage of this stupid thing.”

And there you have it. My week in a nutshell with a J in cast. He’s actually using the arm now these past two days, which is better than the “hanging there like it’s dead” stage he was in. He will move it to keep himself comfortable instead of leaving himself in awkward angles that caused nothing but pain. He even will attempt a high-five, which is funny because his elbow is cast with a slight bend.

Thank you to all I hold holy for the invention of “active casts”. I cannot wait to put this stinkbutt boy into the bathtub tonight and let him get his crazy out on a little water. He truly could use a dip in the ocean or a wave pool but we’ll take what we can get.

This is my life right now. We’re making the best of it and I’m still trying to get a good picture of him awake and in his cast to share with the world. The purple cast has to be remembered forever and always, after all.

Learning Emotions

This may be typical 3-year-old stuff alongside typical autism stuff but J-bear understanding emotions is kind of a trick. It’s not that he does not feel emotions, for he feels the entire gamut and then some I believe. It’s not that he is not empathetic either, for his sense of empathy has been known to blow many of us around him away. It’s the actually labelling and sorting of them that just is not there. Not yet.

… But for one.

A couple of weeks ago J started announcing loudly and cheerfully “HAPPY!” in his bright little voice, practically doing a dance whenever he said it. He’d sit in the back of the car sing-songing the word. So much joy came out of this little boy every time he said the word that it always made me smile at the bare minimum.

Then it dawned on me.

This was a thing. He was telling me something. At whatever given moment he was cheerfully announcing the word, every bit of evidence spoke to him actually being the emotion he declared. Overwhelmingly so.

Then it happened. Saturday, I was feeling miserable and J hopped up onto the couch beside me. My good side, as good as a side could be at that point. We started goofing around with my phone and the front facing camera but never can I generally get him to smile into it. Then as we were snapping photos I said “happy!”…. and this happened:

jacobcouchhappy

excuse my huge blue shoulder

He was intentionally joyful! He repeated it as brightly as possible and I got this image.

For a little boy who barely communicates with the world he just plain blows me away sometimes. He’s making things known and that just delights and amazes me. I love nothing more than watching this little boy learn and grow.

 

I have a what?!

Today, little bear had his first day of school.

For those unwise to the weather of where we are, if they even know where we are, it has been hotter than the devil’s armpit for over a week now and we’ve all been slowly melting off the planet. Most homes in this area were not built with central air conditioning in mind so you can imagine how miserable some of us (ME!) are. This had me so worried about J’s first days of school because he overheats in the blink of an eye. He’s getting better about realizing he is thirsty but if you turn your back for a second it seems he turns red and looks about to faint. It’s not fun.

Now you’re equipped to imagine my excitement upon walking into the school to find their air conditioning had broken. It was dead as a dead thing could be and those classrooms were stuffy. However, his teacher greeted him warmly and he had two familiar faces in  his classroom: the BCBA for the school and a little girl who was in group for a few weeks with him. He cried going in, cried entering the classroom, cried as he remained in the classroom without any of his people. 

Now, cut to 11:30 this morning. 3 hours after dropping him off, I returned to pick J up. All of the other children come jogging out to their respective people, happy as can be. J is happy too, but unlike all the other tidy children I ended up with a runaway from the Lord of the Flies. He was covered with sand and marker. It was hysterical to me. Only J could leave his first day of school looking like that. He did well though and the sand kept him from melting down non-stop about being at school. Tomorrow, I hope, will be even better.

It dawned on me as we drove away from the school that holy cow, I now have a kid. I no longer have a baby (that ship sailed long ago), I no longer have a toddler or any other variation of tiny child. I have a full-fledged kid. It’s like by walking through that door this morning he was accepted into the Secret Order of Kid-dom and given all the rights and privledges thereof. Let me tell you, it feels weird.

He is my baby of course. He’s my little pickle boy and could be a 6ft linebacker and I’d still likely see him that way. It feels weird to no longer see him as so small a child and I cannot quite put that into words. It’s as things should be and of course I want to see him grow as I am so eager to know the person he will grow to be but part of me mourns for that which is past and done now. I miss snuggly baby cuddles and sweet toddler antics. I miss the unsteady steps and the uncertain view of so many things this world has to offer. I love the little boy in my house right this second, but this is going to take a lot to get used to.

Like a true bad parent, I only took one picture and as a staff member is in that picture I’m not comfortable posting it. I will take more as the weeks wear on.

—————-

A fundraising update: I am submitting the information to Mabel’s Labels tonight! They have worked with 4 Paws families before and I am excited to add this to our fundraising fun. 🙂

Vomit Comet

This is what my life has come to.

I’m writing a blog post about puke. Vomit. Yarf. Barf. Technicolor Yawning.

Whatever you want to call it, I’m the weirdo sitting here writing about it.

J-bear is not the guy who gets ear infections by the dozens. He is not the kid with a constant runny nose. He is not the kid with the weird rash on his butt year round, though he’s occasionally known to sport one as most children in diapers do. I am blessed in some ways.

In another, I am cursed. I have the gagger. The puker.

Now, usually, the gags and vomits just occur pleasant places like at home on my living room carpet which, thanks to our slumlord, is already vomit colored. Convenient, right? He has gotten the kitchen floor, the bathroom floor, the bed and anyone who doesn’t move fast enough too. It’s sad, it’s frustrating, it’s gross as all get out… It’s a part of our lives. There is no rhyme or reason to this vomitting. 

Now, come to this week, and he’s vomited on not one but two of his therapists. Neither scenario has had any commonality beyond a therapist being in the line of fire. Once, he’d been upset immediately prior. Today’s? Nope. He was in SUCH a good mood. He’d woken up this morning, had a nice breakfast and a nice bath followed by a long massage that left him content and as calm as he ever gets. He marched into speech pleased as punch.

THEN WENT FULL EXORCIST.

Okay it wasn’t THAT bad but when you’re the mom of the kid that puked, it might as well be. Guilt, embarassment, all of it lines up behind the deep worry that exists for your child.

So today, we go again to his doctor and go “please help us”… Something is clearly going on. He has large tonsils, which we’re investigating having removed. He has a sleep study on 4/24 to see if there’s any reason we should not go through with the tonsilectomy. Is there something more than that? Are we missing something big? My son is a scrawny little fella. He has no weight to spare… I can’t have him vomitting one or more times per day. His system can’t afford it.

Thank you for tolerating this entry about puke. In thanks for your suffering through this, here’s a cute picture of a not pukey J: 

Image

He’s not even 1 in this picture and just SO HAPPY about those toys!

To be or not to be (verbal)…

Today after an outting, I was left thinking on something I have considered often before.

My son is considered non-verbal. He has some words, and he’s growing in his use of them, but they are sporadic and a lot of his language is echolalic meaning he echoes without much meaning if any at all. He is only a nearly three year old guy though, so people often write him off as being a shy child. It’s not a big deal in public… yet. That’s another tale for another day.

Non-verbal does not mean he is not expressive, which is what led me to writing here today. The range of emotions that plays across my child’s face in the course of a day can overwhelm, astound and amaze me all in turn. He will never successfully play poker, for one thing. He has a face like glass, every thought laid out plain as day before the eyes of those lucky enough to watch. Joy, sorrow, fear, frustration, anger, pain, mishief… His sweet face is so dynamic that I can find myself forgetting we’ve managed to have a ‘conversation’ without a word, or that he’s entertained our whole table (and then some) at a meal without ever uttering a syllable.

It’s a definite art. A smile here, a side of the eye glance there, a furrow of a brow or a wrinkle of the nose… This child starts games with familiar adults without saying a thing. He simply shows them what he means and what he wants with simple, clear determination.

I am a biased spectator though. Every day, I am my son’s translator, his advocate, his voice, his comfort person, his waitress, his short order cook, his maid… his mom. I read him like a book as we’ve been at each other’s sides near every hour of ever day of his short life. I am not always right, as reading another person is a wildly imperfect art, but I have confidence that most of the time I do get it right.

Unless he is sick. When he’s sick I curse his inability to articulate needs and problems with such a violence it’s indecent.

I guess the point of this is that I am coming to appreciate how he communicates now, knowing it will change as he learns and grows. I pray of course that he will grow more verbal over time but I am aware that might not be the case for him and am leaving myself wide open to whatever method of communication comes to be for us. If smoke signals and Morse code are all that might ever work for us, I’ll stock up on lighters, tinder and items that are easy to tap together ASAP for it will just be nice to have a conversation with my boy.

He is a good boy, a loving boy, a funny boy, a gentle boy, a rowdy boy but right now he is a quiet boy too, and that’s okay. He’s the only J-bear I know and I love him for who and what he is, no more and no less.

Oh, Cookie…

Cookie Monster is owned by the Sesame Workshop. No ownership implied here. He's all their's.

Cookie Monster is owned by the Sesame Workshop. No ownership implied here. He’s all their’s.

See that cute blue face? Enemy number 1 in my house this morning.

J-bear has a touch of a cold and therefor has been in a mood anyway, but then Cookie comes on at the end of Sesame Street. Gone is my sweet, mild mannered dancing son and in his place is a face stuffing cereal monster mimicking Cookie.

… If I had not run the vacuum then carpet cleaner an hour earlier I might not have been so NOOOOOOOOOOOO about the entire situation.

At first, I watched in horror. Then I dashed into action to save my (ugly, ugly, UGLY but clean) carpet from the destruction of my Cookie Monster inspired minion. I just happened to have left a cloth diaper nearby or it would have been a tragedy all over my living room floor and hands.

So Cookie? We’re no longer talking. Not until J-bear has the communication skills to understand that while one may think your style of eating is funny, it is not wise to actually mimic said skill. Mama’s sanity can only take so much.

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