J-Bear and Me

learning to navigate the world, j-bear style

Tag: stims

Jacob is Jacob!

Before getting on with my post, just a reminder that we’d love to help Saving Gabriel as part of celebrating J’s birthday this month. You can learn more about Gabriel and his soldier Jake’s story here: http://www.jbearandme.com/pay-it-forward-saving-gabriel/

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Today we had a family dinner we went to (Happy 60th, Cheryl!) and situations in restaurants like this often involve a lot of preparation. I talk to Jacob a lot about what’s going to happen, who we are going to see, what we are going to do and what we might say to one another. One part of this preparation involves asking him questions and asking him what he’d say when asked certain things.

Me: “Jacob, what will you say you are? Will you say you’re happy?”

J: “No.”

Me: “Will you say you are three?”

J: “No”

Me: “Well what will you say you are?”

J: “Jacob is Jacob!”

…. Okay I could not make this stuff up. He said it matter of fact, like “duh, woman”. That was it. End of discussion. Jacob is Jacob, and there was no better answer to any question about him than that.

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It’s been a very tough week. Meltdowns have happened nearly daily and they have been fierce. Today, though, was good. No meltdowns. Two visits to the Zakim Bridge.

Have I mentioned his obsession?

The Zakim Bunker Hill Bridge is a beautiful feature on the Boston skyline and is a bridge we have to travel over to get south of the city on 93. J is utterly fixated by this bridge and anything that has similar features to this cable stay bridge, be they my shoes, a toy dinosaur… Anything with similar angles and features is immediately dubbed a bridge. It is his most favorite stim.

For months I could not figure out why, despite whatever supports I used, I could not take him on the highway south to get home from places we’d go out to. He knows, incredibly well, which roads take us onto the highway in the direction we need to get to his bridge. He knows we cannot turn off any exit before a certain point or we’ll not be going to the bridge. This kid misses nothing. It’s amazing and overwhelming at times.

It’s just a relief now to know that’s what he want so we can work on compromises. I’d take him over the bridge every day if traffic weren’t frequently so appalling. Such as it is, pictures shall have to do but for days we have business that brings us that way.

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So this is life right now. Nothing huge and exciting to write about. Awaiting some resolution with the cruise line so I can write about our experiences more in detail and hopefully be able to say that they’re going to work towards fixing things so that no one has to feel as we did. Giving them another week or so to respond before I start just getting a little loud.

The Ups and Downs

Before I get on with writing here, please check out this post: http://www.jbearandme.com/pay-it-forward-saving-gabriel/ — Every little bit given towards Gabriel’s care helps and I can think of no better way to celebrate J’s upcoming birthday than helping!

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So we’ve been back from vacation for almost a week and let me tell you, it’s very hard to consider going on vacations ever again. I know it’s to be expected as J was out of his beloved routine for a just past a week but it’s hard to explain to others who have not been there the extent of what it impacts.

J’s eating has been disrupted.

J’s drinking was disrupted, though for slightly unrelated reasons now resolved. Pro tip: Warn consumers when you’re about to change up things like your sippy cup design. I’m looking at you here, Playtex.

He needs his stims more, which causes some interesting problems. You see, his current favorite stim is the Zakim Bunker Hill Bridge in Boston. It’s a nice bridge, we only live about 10 minutes away from it (3 hours to 10 days in traffic) but no one can run off to drive up and down a highway every single day. Now, trust me, I sneak in more ways to drive across that bridge than anyone else in this state but he has to frequently just make do with pictures of the bridge on his iPad.

This doesn’t always suffice.

This is when it starts to hurt, because he clearly needs something and there’s no easy way for me to give it to him and that’s all I want to do. This comforts him when he’s out of sorts and of course I want to make him better but short of moving the bridge into my non-existent yard it’s not completely possible. He has found alternative stims, ranging from his chip clips to walking beside his easel that mimics the points of the bridge in some ways. I imagine it’s like being given generic soda when you want name brand though – it tastes okay but you still want the exact taste of Coke or Pepsi.

So that’s where we are. And it’ll get better. I am praying that when his dog joins us in a few short months it will get easier to work through these moments. There’s something to be said for the balm companionship and support can offer, especially that offered from an unconditional friend.

Talking to Chip Clips

I talk to chip clips.

“Chip clips! How are you? Are you happy today?”, I ask with open enthusiasm.

The chip clips, affixed to a bucket by magnets, are moved to nod in answer to my questions.

These inanimate objects might as well have names, personalities, families and jobs. They are an intricate part of our family, at least. They live on metal pail given to J the Easter before last and are one of his stim items. The simple act of looking at these two chip clips on their pail from various angles is peaceful to him.

So I talk to chip clips.

This is not the only thing I talk to or with. Stuffed animals come to life, displaying exaggerated reactions and emotions to reflect to J how emotions work. Cars with busted parts in the parking lot to a garage requiring reassuring J that while said car does have a boo-boo, it will be okay, someone is going to fix the boo-boo. Trees must be greeted and occasionally hugged on the way out of schools. Light poles are said hello to as well.

My child struggles with social skills. There was a long time of his life where he displayed few and seemed distant, even removed. The progress he has made is substantial and part of that progress entails living in a manner most unexpected yet most oddly pleasant. We end up going a lot slower through life and seeing a lot more. There are details he catches that I would have otherwise missed, all because we stop at all those trees.

It’s tempting some days to hurry him along with the thinking that come on, we said hi to those trees already earlier today… It’s becoming more clear that when there’s no emergency, there’s no need to hasten or skip these things. These habits, they only linger while they serve a function even if that function only is obvious to J himself and to forcibly remove them is fixing what is not broken. That ends well for no one.

So next time you see a bedraggled mom with a sweet-faced little boy stopping to chat with trees or talk to chip clips, remember that as odd as it may be to you it might very well be very important to them.

Besides, chip clips are fine conversational partners when they are voiced by a nearly 4-year-old who formerly had near zero functional communication skills. Fine partners indeed.

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?

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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!

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