J-Bear and Me

learning to navigate the world, j-bear style

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. 

4 Comments

  1. I know this all very well…the sleep studies, the seemingly never ending evaluations, the difficult trips to Target. I was right in your shoes. Well, actually some days, still on your shoes.
    I am not here to tell you that it gets better or easier, but just know you aren’t alone. I live in MA also (floating hospital is our place too). I’m here if you want to chat.
    (Found you thru your post on the BPB Facebook group about the discovery museum night. One of our favorite places)

    • Team Floating ftw!! I was wary as all my familiarity has been with Childrens for various things but despite some administrative snags at Floating, I have found the clinical staff to be simply wonderful at least. Dr. Ultmann, Dr. Tariq, Dr Ngo (who has sadly left)… We’ve had good experiences overall thus far and I hope things remain on the up and up.

      May I ask how the sleep study went for you guys? I have a lot of worries about going through it with little man and am only peripherally aware as to what to expect for a child so young.

      Thank you so much for commenting 🙂

      • The sleep study was really interesting. It wasn’t easy but actually I think it’s easier for a younger kid than older (I’ve been thinking of doing it again with my son but he’s 7 now). They take really good care of you both there – you can bring in favorite videos, etc. It will be okay.

        feel free to email me at trydefyinggrav@gmail.com anytime if you want to chat. 🙂

        • Thank you again! I just may do that! I’m very nervous about the study yet very hopeful. If it can give us answer and I can get my son relief from at least one thing that vexes him I figure the stress is well worth it. I have DVDs already on hand of two of his favorite movies plus I can load up the kindles and such. Also, unlike our trip to the ER the other night, I will have to remember his precious fat stuffed cat. Bad mom, forgetting the one lovey!

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