J-Bear and Me

learning to navigate the world, j-bear style

Month: March 2013 (page 1 of 2)

life

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here it is, our life summed up in one photo. for now at least.

What a Week

This past Tuesday, we visited the ER in the wee hours of the morning. I wrote about how frustrating that experience was.

Wednesday afternoon, J spiked a violent fever and would not accept fluids. His diapers were dry, he was starting to vomit up what little he had taken in… We returned to the ER. 

The experiences were night and day. This is why we should in future seek out a pediatric ER that is open in the middle of the night. This hospital, while great, closes the pediatric ER at midnight. 

The nurse was warm, understanding and respectful of J. The doctor was thorough, compassionate and most of all she listened. When I expressed concern about his throat, she braved checking it even though he hated it. She noted that because he is non-verbal, she was going to be a bit more thorough than usual which was fine by me. He had a chest x-ray and abdominal x-ray, both of which were handled by a very gentle and very patient radiology tech. I held him, she coaxed calm from him and between us the experience was not nearly so awful as it could have been.

Both x-rays came back clear, too. Major phew.

Apparently there is a violent virus going around and if there is a violent virus going around it comes to visit poor little bear. His doctor noted at our follow up yesterday that this fever might linger, as it had already, but knock on wood he’s seeming alright this morning.

I am up to my eyeballs in vomit and mucous stained laundry. I am wearing hot pink sweatpants because that’s all I had clean. I cannot remember the last hot, good meal I had. 

But the fever is down. He’s showing signs of his usual mischief. He just dragged his snotty nose across the top edge of my laptop screen (OMG REALLY?! guh. yes I took time to sanitize the daylights out of THAT maneuver).  He will have a bath later and hopefully we will have a nice if low key Easter.

Happy Passover, Happy Easter, Happy Spring, Happy whatever holiday you might celebrate this time of year and if there’s none – Happy Saturday and enjoy the Feast of St. Markdowns on Monday.

How It Is

Little bear is still sick, sadly. He’s snuggled on the couch drooling on my pillow as I type this.

I texted one of his therapists this morning, someone he adores intensely and who adores him just as much in turn I think, and let her know we had to cancel today. Even if I read things wrong, it’s nice to think that they care as much about him as I do. I know most of them if not all appreciate his general demeanor. He is a happy child overall, even with his peculiar way of approaching the world. He near always greets with big smiles and will crack them up at least once a visit if not more.

So, as my train of thought often does, it veered wildly from thinking about that off into the scary forest of Future Tense. I wondered what it will be like for my little boy in a few years, in a decade, when he is grown… Will this boy still be so sweet, loving and joyful?

That’s when I got scared. That’s when I got sad.

Right now, he has the blessing of ignorance on his side. People see him as just a charming, if somewhat odd, little boy. He’s adorable. It saves his hide even from me in a lot of ways. He is treated gently accordingly a lot of the time (there’s always those people who are just born to be cruel no matter what they’re faced with. Let’s ignore them.) and he has no reason in this world to even realize there’s something different about him. He’s given the safety and security to just be himself. 

What happens the day he realizes he’s different? What will that do to his world view? How will that impact him?

Forseeing pain for your child is gut wrenching. You never want them to hurt. You know they will, for that’s a major part of the human condition, but all you want to do is shield and save them. This demon I can’t hold off forever. I can prepare him, I can bolster him, I can hold his hand and remind him of who at heart he truly is… but I can’t take this weight off his shoulders when it comes to bear. 

My dear, gentle boy.. You are different. You’re very different. I’m sorry for the times you might come to feel that life would be so much better if you were “normal” but that’s not the way the dye was cast for you. You don’t need to be normal. You need to be you… Beautiful, expressive, loving and hilarous you. It’s okay to feel sad, or mad, or all of that. We all do. I just hope you realize how precious you are exactly the way you were made and what a treasure that is. 

We’ll make it work. To use the words of Temple Grandin… You’re different, not less. You are loved for exactly how you are. 

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Good sir, taking pictures of himself as he so loves to do.

Go Away, Croup and Humanity in the Hospital

J-bear is one of those unlucky kids who is susceptible to croup. His first run in with it was a week before his second birthday when he had to spend a night in the hospital because it took that long for the stridor (that awful barking cough sound) to calm the heck down. Breathing treatments, steroids, the works. This was before we knew he had autism and it was harrowing.

He’s had a few attacks since then, all minor and easily relieved with heavy steam and keeping him calm. Not so bad, right?

Then came Ninja Croup.

Seriously this came out of no where. Usually when the little guy gets sick, we get a shot across the bow of some sort. He’ll have a gagging episode of all mucous, he’ll be completely out of sorts, he’ll abruptly be lethargic… Something will tip the world off that there is something Not Right going on with him and the world may brace itself as it waits for the storm to break. This time whoever is in charge forgot to schedule the warning.

Last night, he went to sleep after a night of his usual playful antics. We played games with the exercise ball, goofed around the living room, did milk and cuddles and bedtime. 12:30am rolled around and all hell broke loose. He woke up coughing and hysterical, unable to be calmed. This is scary to all involved, in my opinion, as he has no way to articulate a single thing about what’s ailing him. It’s an elaborate guessing game that thankfully those who are closest to him are growing increasingly good at playing. He’s coughing, spiking a fever… then the barking started. Stridor. Croup. Damnit.

Tried steam, tried coaxing him into calm, tried giving him his dearly beloved ginky (pacifier)… Nothing helped. He choked up a healthy amount of mucous but still, no calm and he was fighting to breathe.

So off to the ER!

And that’s what drove me to write this post. The world didn’t need to know our saga of croup. The thoughts that brought me here are merely tied to that saga. 

There are some places in the world that are just unfortunately completely unfriendly to a child like J. The hospital, especially the emergency room, is near the top if not absolutely tops on that list. Bright, intrusive flourescent lights coupled with lots of foreign noises, strange people and repeated examinations… Oh, and the fact that they always want to put sticky things on him. That’s it. It’s hell on earth to the poor guy.

With the prevalence of autism increasing it seems by the day, you’d think there’d be more awareness in hospitals. Exactly one nurse who interacted with us took to hear that he does deal with autism and asked how best to approach him. What works? Is he okay with touch? How can we make this easier? She respected the bright lights in his exam room being turned off (ambient light from various monitors and the hall outside were more than enough) and just took great care with him. Everyone else was so hurried they ignored the person that is my son. They never mentioned what they were doing, just hastened through doing whatever they felt best and scurried along. It was hours before the kindly nurse realized the oversight and explained exactly what the plan for his care was, what had been done, and how long we’d be there.

He’s an almost 3 year old with limited language. I get that. But he’s human. He understands how you address and approach him with more clarity than he is given credit for. He was scared. He was sick. He needed their best compassion rather than impatience. I appreciate that one good nurse a great deal. J was delivered in that hospital and I know how amazing their nursing team can be… it just largely failed this little guy last night.

Anyway the little monster is home, recovering and showing signs of his usual self as it got closer to bedtime. Croup is a right bastard though and tends to get worse in the night so it remains to be seen how tonight and tomorrow night goes. The steroids should carry him through til tomorrow and allow his body to have had time to fight off the infection enough to avoid any more hospital runs.

Here’s hoping, anyway.

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.

Local Autism Event – Discovery Museum in Acton

For families of young children on the spectrum, the Discovery Museums in Acton is having Especially for Me! day focusing on children and families dealing with autism on Saturday, 3/23 from 5:30-8:30. You must register in advance (you can do so here) and it is free. They keep things pretty low key and it makes for a fun evening.

The next event will be Saturday, April 27th, and you can register for that date here.

 

Always a Party

You have not lived until you’ve had a diaper explode and leave its mark all over your living room. We’re not talking bowel fail here, we’re talking all the innards of the diaper decided to be out-ards all over the place. I mean, seriously. It was a Greek tragedy all over the living room that required vaccuuming, carpet steaming and the burning of sage to cleanse the evil spirits that must have once possessed that diaper out of the house. 

J didn’t care. He rarely does. As long as life goes apace for him he doesn’t give a care about these random crash and burns. Meanwhile, it’s me losing her marbles over omg another night spent with my best friend the carpet steamer.

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Conversations have been hilarious the past few days because J decided he has to supply your answer, too. Before, conversations went like this:

J: Help.

me: Would you like milk?

J: Milk, please

me: Okay! 

and we’d go get milk.

Now? 

J: Help

me: Would you like milk?

J: Milk, please. (a pause) Okay!

Me: ….

…. Apparently, whoever he’s talking to at the moment never ever says no. It’s both funny and minorly frustrating. Definitely more the former than the latter.

—————-

Yesterday, we completed his one year evaluation with Early Intervention.

I was SHOCKED that he was delayed in social, cognitive and communication! And if you believe that, I have oceanfront property in Arizona to sell you.

He improved markedly if you look outside the numbers. His skills have grown a lot in the past year, which is so promising. It makes me so happy and proud of him to hear that. The numbers look very similar to last year’s but the test asked a lot more this year than it did of him last year due to his age. I understand that. He struggled mightily with the testing as he is not at all a man of quick transitions but we got through it and we never have to do that particular assessment again. 

The best part of the whole thing was he saw his whole Early Intervention team – his group leader, his coordinator and his early intervention OT – in one spot for the first time ever. It blew his mind to see his group leader outside of the center! He had fun playing with them all and reminded me how sad I am going to be when our adventures with them are over come June. 

I am sure I will have something more deep and profound to write soon. The fun never ends.

Sigh

So, no word from Floating Hospital about this sleep study. Meanwhile, he gagged and cried so hard last night after waking up gagging that he has petechia (little red dots where tiny capillaries broke from the force of his coughing/gagging/crying) all around his beautiful eyes.

The hardest part? Not the throwing up. Not the cleaning up. Not any of that. It was the fact that I could not tell what the problem was. My son could not tell me what was wrong, only that something WAS wrong and then the guessing game ensues. Trial and error, trial and error, all while this poor child is fearful, in pain, etc. It is about the most discouraging part of all of this stuff. 

Now, do not mistake me. Every experience teaches a little about what the causes COULD be, and yet, inconsistency can be king somedays. A parent in my parents group notes her child to be “consistent at being inconsistent” and ya know, that’s exactly how I am learning autism to be for my son. 

One day, he’s mister present. He’s engaging in his own way, completely involved in whatever therapies are happening that day and truly delighted to be alive so it seems. Then there’s the other days, where stimming and regression are king and it feels like nothing positive can get done at all. And then, there’s days that are a combo of the two. Most days tend to be a combo, though one always shows more heavily than the other.

Today is more positive than negative, for which I am grateful, but man do I ever need to get a response on that sleep study so we know where we’re going and what we’re doing. I want him to have relief, and I want the answers others can give me for him right now.

———–

The lessons I learn:

J cannot tolerate sitting in a regular shopping carriage and if allowed to run free will do just that. He’ll stim on the carriage, at peril to himself, and stim on everyone else’s too. It’s frustrating but hey, he’s overwhelmed in big stores. I understand why he does it. There are more days than not right now where, if it’s available, I can use one of those impossible to steer mega carts with the forward facing bench or kid seats and we’ll enjoy GREAT success. He’s happy, able to feel secure while interacting with me when we shop and I’m happy cause I can get the shopping done without being so worried about him. 

Today he was very dubious about shopping carts at all. I let him pop up into the seat on his own and buckled him in and he wasn’t too keen. He had a little meltdown at the pharmacy and couldn’t settle. So what’d I do?

Strap his cat in beside him.

Why didn’t I think of this months ago? I wish I had a picture. J in one seat, cat in the other as we cruised Target. I could have shopped all day, he was so comfortable and content.

My life is all about whatever gets us through the day.

God help us all if anything ever happens to Fat Kitty. We’ll all be screwed, then. 

The Most Evaluated 2y9m old on the PLANET.

Seriously, can J-bear get a cape? A theme song? SOMETHING for going through evaluations by the millions?

Let’s break it down:

Since January, he’s had the following:

– ABA evaluation (checks progress of therapy, develops new goals)

– Developmental Evaluation (the complete BIG evaluation determining all his diagnoses)

– Early Intervention evaluation (okay this is Monday but still)

– Speech Therapy Evaluation 

And then between now and June, the schools propose THREE more.

… Are you people kidding me.

I understand the need for a lot of these. I am grateful that the ABA, Speech and EI evaluations are all completed by people who are familiar to him, so they feel like a session filled with play as well as work. He has only had 1 evaluation this year that was truly hard for him and he made it through. 

Every time I go through one of these it is an emotional wringer. First, I watch him work his way through the obstacles placed before him so that his skills may be studied and considered. Then, I watch people deliberate over what the data they collected tells them. Finally, I get emotionally knocked around by hearing “deficient” in this, “behind” in that, so on and so forth.

I propose that all people involved in these evaluations on children place a category within their reports that outlines what the child is AWESOME at. Seriously. We parents and caregivers might very much need that, and as the child gets older, they might need it too! They deserve to see/hear the ways in which they are exceptional. I know my son is delayed and struggling significantly in some areas. It made my day today to have the woman doing his speech evaluation share a great deal of positivity with me about what she sees in Jacob and how she feels about where we can go from here.

We need positivity amongs facing all the challenges. I needed today to hear someone say that he truly is a bright, sweet boy – to know that others can in fact see what I know is so very much him. 

Still waiting to hear when we might be headed for a sleep study for him. Good times! 

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I have a lot to say but til I get time to write enjoy this epic picture.

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