J-Bear and Me

learning to navigate the world, j-bear style

Tag: successes

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.

Gratitude

Something I said today to J’s speech therapist was “It’s amazing how people can manage to be ungrateful for what they have”.

I suppose we are all guilty of this. No, wait. I am willing to bet a princely sum that at times, we’ve definitely all had moments of this.

It was just a casual conversation I was overhearing while waiting for J’s appointment to start, a parent of a child J’s age being displeased that her son “talked like a baby” and constantly demanding he “stop using a baby voice”. Here I was, witnessing this, and from my side of the room all I saw were two boys of similar age, hers and my own, playing and being silly as small children do yet one was being told to speak more maturely.

Now, granted, apparently this little boy “can talk like a 20-year-old” but whatever. At that moment, he was being his age.

It hurt me, right in the heart. I wanted to take J away and hide forever from people like that. I wish I could have sheltered that little boy too. It’s cute and all when small children speak like little adults, don’t mistake me, but being demanded to do so is tough. It was the attitude being displayed that hurt the most though. It rang to me like me being smug about my son running while another mother sitting across from me wished, day and night, for her child to walk.

Yes, I know J talks. I understand him better than most anyone else, after all. But that’s the thing. His words are hit or miss. If you are not in one of his favored places… There’s a very low chance you’re going to hear much. It’s just how it is. He is always encouraged, always praised, always given incentive but he’s not there yet and that is okay. He will always be encouraged and supported in terms of communication, however his preferred method of communication shakes out, but damn.

It was like a bucket of cold water to my face, having all the things I fear for my son sitting right in front of me: the judgemental people, the ignorant people, all of it, right there being sharp with their own child.

What a day.

Despite this, and after two days of pretty remarkable meltdowns, I took J to Cracker Barrel tonight after he said “pancake” when asked what he wanted for dinner. And he ate three bites of pancake, one with syrup. I know a lot of people won’t get the reason that’s a big deal, but it is. This child does not try food lightly yet he took actual bites of pancake (he’s had it before once at school) and willingly dipped it in maple syrup, then ate that too! He drank his milk, he sat in his chair, and he behaved wonderfully. Every time the waitress came over he pointed at her tray, then waited expectantly. He thought every time she came by she had more mysterious stuff for him! Ha!

So, a success to end this post on.

Halloween

My son trick or treated.

This is so damned awesome to say.

My son trick or treated!

He marched down Main Street and around the town square and joined other children collecting candy from various local businesses. He struggled a little bit with approaching some of the locations or participating in some of the merchant’s activities but overall, he did amazing. Said thank you, even at one point tried to trade his candy for a new piece at a business.

Now, he has a cowboy costume for this year. Like most children on the spectrum the idea of putting this costume on was abhorrent to him, even if it is just a coat and vest. So at the immediate last second I put a too large Red Sox Kid Nation player style jersey on him, plunked his Sox hat on his head and out he marched.

And he was a hit thanks to Game 3 being due to be played tonight.

Now he has a plastic pumpkin laden with candy and goodies that he is just fascinated with and continually asks for chocolate.

To think, he might get to go again this week! What a lucky kid!

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PS: Auctions are still going on til 10/30! Go to http://www.jbearandme.com/Team-Jacobly-for-4-Paws-for-Ability and check out the links from there! An autographed picture of John Lackey is being auctioned as well as a large gift basket from Thesaurus Tea! Crazy awesome stuff!

The Best Boy

Today’s been a thing. I had surgery 10 days ago and had issues ever since. I went back to the surgeon today for the latest look at what’s going on with the holes in my abdomen and this time, J-bear had to come with me.

Now, we all know he’s no stranger to doctor’s offices. He has his own battalion of medical professionals. He’s never actually been into a doctor’s office with me as the patient though, despite seeing me in the ER and hospital, so I was nervous about how this would turn out.

Sometimes I wonder why I worry. He did perfectly great.

The nurse practitioner, who is a very delightful woman, spoke directly to him and was very sweet with him. While she worked on my incisions, J did get a little nervous. Bandages and the like make him very wary and uncomfortable. He did not like seeing the steri strips and such, so he stayed back. The nurse practitioner kept things very light and made everything so matter of fact that J never went into his avoidant behaviors. At home, J would have steered clear of me after seeing all of that. Today in the office, he just kind of inspected, shrugged it off and carried on with his day.

He went out on errands with me afterwards and apart from a brief little meltdown when he didn’t understand where we were going he did wonderfully. He helped me pick up much needed staples for the apartment and even earned himself one of his favorite snacks. Well, close to. Both Dunkin’ Donuts did not have munchkins (I know!!!) so he had a chocolate donut instead, which is apparently a most acceptable substitution in his majesty’s estimations.

Now, strangers witnessing today might have thought he was a terror at points because he does vocalize loudly. Not angry and screaming sounds, just a lot of loud words in his own language. These things don’t entirely phase me, though I do remind him to be quiet, as I am grateful he vocalizes at all. He even spoke independently to the nurse practitioner, saying bye-bye with a stiff little wave.

Yeah he really was the best boy today.

Fabulous Dinner Dates

It’s oh-dark thirty here and I should be in bed. I will be, shortly. I wanted to write this down first.

This afternoon Mr. Pickles and I ended up taking a nap that was way too late and way too long to be conducive to a good bedtime. This should have led to a terrible evening if past experiences meant anything. If he naps too late, the evening is a chaotic disaster nearly every time. I was braced for total fail on all fronts. 

I was hunkering down, preparing to put on heavy padding and bury myself under a fort of pillows for my own safety from the three foot monster in my house when I realized we needed to make our monthly run to Wegman’s out west of us. I love, love, LOVE that grocery story but it’s at such a distance from us that monthly runs are generally all we make. We were overdue to go and it was coming up on the time traffic would die down for the evening. I seized the opportunity, loaded J-bear into the car and we bolted like we had broken out of Alcatraz.

It was awesome.

Traffic? None to speak of. Weather? Gorgeous. Plans? Fluid and completely open to our whims. 

We stopped at IHOP right next to Wegmans and enjoyed a fun dinner with not a lick of healthy food. I figure it’s a celebration of his first week of school and his success there and at the doctor today. He enjoyed a Funny Face pancake, even braving touching the pancake though he would not actually eat the pancake itself. He gobbled down whipped cream and chocolate chips though. 

told you there was no healthy food to be had. Unless bacon counts, cause he ate half a piece of that.

He behaved wonderfully. I cannot even express enough how well he did. He stimmed, yes. He babbled, loudly at times, and he even engaged in a few behaviors I find awkward to deal with in public (harsh head shaking and smacking himself in the face :'(). A lot of people might not have characterized an outing in a restaurant with all of these behaviors as good but they don’t know my boy. They’ve never seen him just spend the whole time screaming, trying to vomit (or succeeding at it), and other upsetting and sad actions. This was him being more organized and more within the here and now and I loved it.

The grocery store is one of the few that he actually enjoys. You see, Wegman’s has this huge train that runs over the dairy section. If nothing else will calm him, that will. Today a car cart was available so let’s just say this boy had it made in the shade. He loved it, remained happy and calm through the entire trip and had no freak outs when I might step away from the cart very briefly to get an item or three.

These are victories for us. Usually, shopping trips are so exhausting for me that I rarely want to go again. I usually miss half my list and end up so exasperated I want to cry along with him. It is a rare day he’s not bolting or stimming on carriages or pulling everything within reach off the shelves.

I love this. I love this so much. I know this is just today and that tomorrow might be an overwhelming nightmare but it was not today. There will be more todays, enough to make getting through the nightmare days worth it. 

Til then, I am going to be very, very grateful for the wonderful date I got to have with my best boy as he ate chocolate, whipped cream and milk for dinner. He will not be a little boy forever and every chance he has to be a “typical” child makes me happy beyond measure.

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