learning to navigate the world, j-bear style

Tag: health

Farsighted, Perhaps

We managed to finally get J to a fantastic ophthalmologist last week. When I say fantastic, I feel the word falls short. The New England Eye and Ear Clinic at Floating Hospital for Children in Boston is stupendous. Their technicians get it. I mentioned he would struggle and the tech that assisted us put things immediately at ease by stating you don’t work with children if you aren’t ready to be patient.

Can we clone her attitude and transplant it to those in need? It was that amazing.

Anyway, between her and the wonderful doctor herself, it was determined that J is definitely farsighted and that might account for the strange crossing of his eyes we see. That’s him straining to focus on that which is close. We all do it to some degree when things are very close to our faces, he just happens to do it to things slightly further afield. It’s been clear since his earliest days that his distance vision was good. This child can spot a favored item what feels like miles away. We’ll be on a highway and he’s noticing school buses on side roads nearby, something we’d miss without his pointing it out. We are now noticing more at home how this likely has been the case all along as we see a few of his behaviors in a whole new light, like how he walks away from a new item to study it before coming close and taking it up.

The hard part of this is whether or not he will need to wear glasses. The likelihood is high that he will need to wear them at some point but since his eyes were dilated at his appointment he was having none of being cooperative with the doctor as she did her measurements. She got some measurements, but not enough that she felt confident in prescribing lenses. He will return in a few months for a follow-up, along with ourselves armed for potential repeat of the dilation issue, and we will see what she says.

It is a relief that there is nothing severe going on with his eyes. It is so hard to tell what is serious and what is not when it comes to health issues and J. He can’t tell me if he’s having headaches from eye strain, and people blow off certain behaviors as just part of his autism and sensory processing disorders. I feel that wrong and unfair. Just because he’s autistic and has SPD doesn’t mean that there’s nothing else possible. It just means sometimes it’s harder to tease out as  you’re lacking his ability to describe symptoms to you. We have to go with what we, who are outside his body, see. I am grateful for at least one doctor on his team who takes concerns seriously and doesn’t immediately lump everything up to behavior and autism.

If and when he does get glasses, be prepared for a lot of yelling from himself at the indignity of having to wear the silly things. We’ll see how that turns out.


As an aside, Brooklyn was with us at the appointment. She laid on the floor through most of it, appearing to do little… It’s worth observing however that we rarely have gotten J into this hospital without a fight at some point. We have now, with her help, gotten him in and out 3 separate times with only mild incidents caused by outside forces rather than a true resistance/fear on J’s part. Amazing!

Happy Happy Sad Happy Mad

Believe it or not, the title of this post could be considered directions from where we live to the Zakim Bunker Hill Bridge in Boston.

They’re in J-bear-ese, of course, but it’s still true.

We drive down I-93 south on a regular basis and there is nothing that J loves more in this world right now than to get into the car and drive down to “bridge”. Sometimes, any old bridge will do but more often than not it has to be his bridge, the majestic cable stay span of the Zakim in Boston.

The drive is amusing. Each street light is labelled “happy” because, when seen through his lens, they look like great big smiles. Then, as you get closer to the city, you come across “sad”, a span of streetlights where one side has lost its lamp. He chirps “I fix it!” every time we come across it. “Mad” appears when the “happy” streetlights change to a different sort and a few look like angry eyes.

This is most of our drives now, not just the ones into the city. He sees happy, sad or mad in so many shapes and places. He can spot a school bus at an incredible distance. He can notice all sorts of landscape details but he labels them all in his own manner so sometimes it takes me a few passes until I fully comprehend the wonder he is showing me.

I love it.

I hope he always sees happy, sad and mad everywhere and that the world always holds such vivid yet benign personality. This is how J sees the world and it feels like a gift when he shares it with the rest of us.


Little bear is currently struggling with a case of pneumonia, the poor kiddo. It started right on his birthday too and has yet to let him go. He’s on antibiotics that hopefully will get him right as rain again but as we wait for them to kick in he is so wildly out of sorts. I am glad I trusted my instinct in thinking his cough sounded unusually terrible rather than letting myself write it and his unusually out of sorts behavior off before it could get much worse.

Now to hope he’s back to himself before summer school begins in July!

Crime Scene J-Bear

So if I don’t laugh about this stuff I might cry about it. Laughing’s more fun, right?

Today, one of the rare days I drove more than a few miles from home while J’s in school I get a call from the school nurse to come get J. He had vomitted a couple of times in class.

When I got there, she asked me “How’d you get here so fast?!” as I’d warned her I was south of the city when she called. I answered “laws were broken”….

… I forget that the school staff doesn’t know me well enough to read my sarcasm. I likely have a reputation now.

Anyway, back to J. I walk into his class and immediately knew he was sick. He was cuddled down in a quiet area of the room on a beanbag while one of the aides soothed him. He was not his usual spunky self. As he got up slowly to come meet me, I saw the wreckage he wrought upon the classroom. The way they cordoned off the area really did, truthfully, appear like a crime scene. Strategically placed chairs, items used to block the offending area off from small, inquisitive people… I had to laugh. I fought the urge, but man. I failed. Thankfully, I think the aides all had a very similar sense of humor. I believe you sort of have to, to work with young children.

I bundled the little monster up, grabbed his bag of puke laden clothes and we went home. We weren’t home half an hour before I was all in a panic about how fast he was breathing and just how off he was. Thankfully, his doctor’s office is 5 minutes from home and we were there in a hurry. The nurse practitioner, who is great, saw him and diagnosed bronchitis pretty quickly. I was both relieved and scared! Relieved it wasn’t something a lot more serious, scared because this will be the first exposure he’ll have to an antibiotic since birth.

Only J could make getting sick result in crime scenes being set up and snowstorms being braved for doc visits, let me tell you. Never a dull moment. Thankfully, he’s showing a little of his usual self right now as he plays trains. I bet he falls asleep fast tonight, especially once we get medicine in him!

Oh. This all does mean one bummer of a thing – J won’t get to go to Kioko til after the New Year unless creative rescheduling can occur. I hate that. 🙁 He’ll hate it too when he realizes he’s not seeing all the people he adores!

Cling Like Static

J-bear has got the ick. This is all the details on his illness anyone could ever need because… yeah. It’s one of those plagues.

When he feels ill, he becomes the Incredible Clinging Monster. I should have known by how lovey dovey he was this morning that something was potentially soon to be off. This was my warning shot and I missed it completely. However, it could be worse. He’s been known to be absolutely unbearably whiny during illnesses too… The clingy version of him is way, way better.

You see, all he wants is to be in contact with me. He wants hugs, he wants kisses, he wants to be on my lap, he wants to be by my side… And I better not even think about being in a different room! There he is, my unhappy little shadow puttering along after me with the saddest eyes anyone has ever seen.

Have you seen my son? Have you caught a glimpse of those killer grey eyes?

Yeah I fall to pieces on sight of that look every single time.

He came home from school, attempted lunch, was ill and I took him to lay him down for a nap. He whimpered the entire time he was falling asleep until the pressure from both his weighted lap blanket and being bodily embraced allowed him the ability to relax and sleep. I love that I can be such a comfort to my son but I have a possibly terrible confession to make: It’s exhausting.  He touches my face a lot, which sends my stress levels through the roof because reasons. But it’s his comfort; his stim when he’s in need of rest, reassurance or relaxation. When the two things are weighed – his need for comfort versus my stress at having my face pawed at – his need forever wins.

Even when I want to crawl the walls at being woken up to a toddler hand smooshing my entire face.

So yes, right now little bear is not well, and right now he is a thousand times more clingy than usual, which makes for a tired mama and long days. This too shall pass, right?


If you have the time please check out this post right here about Elmo and Lyssa. They could use our help and support if you have any to give and I would be greatly appreciative to those of you who can share it around!

Bye Bye, Cast

So it’s gone.

Today, at 9am EDT, we bid a not so fond farewell to J’s purple cast.

There was a lot of screaming and fighting involved. The poor kid, this appointment was the stuff of all of his nightmares. Let’s list them:

  • Flourescent lights? Check.
  • Strangers talking loudly to him? Check.
  • Being laid flat on his back staring at the aforementioned lights? Check.
  • A machine that combines the sounds of a vacuum cleaner and a chainsaw? Check.
  • Being pinned in place while that’s being used? Check and double-check.

This was a recipe for fail, and fail it was.

Now, I cannot fault the tech and nurse that removed the cast. They were doing their job and, to their credit, they spoke to J directly and with great empathy despite the fact he clearly was not following what they were saying or following their instructions without my moving/directing him. The moment he got on the table panic set in and it was a fight from beginning to end.

Cast removal? Not for the faint of heart. However, they got the silly thing off and besides being a little grimy and rough his arm looks great. He’s had it scrubbed twice now and I’ve massaged it with Dream Cream so his skin is returning to softness. He braved two quick x-rays and finally I could see where the break was when the PA showed it to me. He healed beautifully and, barring any continued favoring of the arm beyond the next couple of weeks, he’s back to standard J-bear hijinks.

He was so upset through so much of that process that I was worried he’d throw up. Thankfully he began to calm as we were leaving and was quieter as we marched down the stairs to leave. Once we had some treats at home (J-bear still does run on Dunkin’) and relaxed I laid him down for a nap…

That lasted til 3:30pm. Which I took with him.

Man did we need that.

He’s super relaxed right now and bedtime should, I hope, be soon. We’ll see how things turn out.

And pray he doesn’t ever need a cast again.

Bloating Away

I’m too uncomfortable to sleep so here I am, chatting at the internets.

Life is a lot easier right now, despite post surgical insanity. This morning the horrible heatwave of 2013 ended and it was as though the world heaved a sigh of relief. I said elsewhere that my body has felt like a clenched fist holding broken glass since Monday of last week. Now, finally, it’s as though everything can start to relax even if I feel so full of air everywhere that I might pop or blow away.

Moving about is improving. It’s not great and I am getting back pain like I did post c-section as my back overcompensates for my weakened abdomen but it’s not nearly as bad. It’ll continue to improve. I only take the narcotics I was given at night because while they work alright, I hate them.

Am I the only person in the world who hates narcotics? I refused them for weeks and weeks and only gave in last week after so long of discomfort, pain and just plain not resting. Then, of course, post surgery I really needed the strong stuff. Dilaudid was no freakin’ joke. That stuff knocked me right down but allowed me the ability to get precious sleep. Thank God too, cause I had the worst of roommates.

Another tale for another time, maybe.

J is still struggling with all that is going on. I know he gets more than he might initially let on. I see it in his decision making but he is, after all, a 3 year old boy. He wants to rough and tumble! He wants to crash into me! He wants me to pick him up for cuddles and hugs whenever he wishes it! So this is still an area of sorrow to me. It’s silly, I know. Soon enough I’ll be smothering him with hugs and throwing him around as I used to but so much of his communication in terms of affection, care and just play is physical that when that absense is forced, it leaves a dreadful hole in our interactions. I improvise when I can but overall, patience is going to have to prevail on this count.

I need to regain my momentum with fundraising. I have great ideas for things to do from great people and cannot wait to sit down and explore the options and start putting things into play. Having my strength and health back is absolutely key to this effort and it too is going to demand patience I don’t know if I have. I am a nervous person terrified of failure. I cannot fail at this, not for J, not in a million years. 

So. Soon, I hope, big things will start to come together. Disappointed in some people I’ve reached out to who initially seemed on board but who have since faded out. Life must have gotten in the way but I cannot help but feel a little sad for it. 

I just have to have faith, right?


It might be the vicodin but I cannot find the spellcheck on WordPress right now so forgive me if this entry reads in gibberish. I’ll fix it in the morning.

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