J-Bear and Me

learning to navigate the world, j-bear style

Month: May 2014

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.

Pay It Forward – Saving Gabriel

I mentioned on Facebook something about wanting to pay the good fortune J has been blessed with forward. When you stand back and look at J’s short life, he’s been one lucky boy. He has people who love him, he has everything he could need and a lot of that which he wants…

Given the blessings paid to us last year in helping us fundraise for his service dog it only seems fair to work on paying that good fortune forward. J’s birthday is in late June and I have been trying to figure out what way we turn that into a way to share good fortune with our world rather than just with ribbons and bows for an already blessed boy.

Here’s our chance.

I want you all to meet Jake Murphy and his service dog from 4 Paws, Gabriel. You can read a better version of their story here but here’s the brief version: Jake, while serving our country in Afghanistan, lost his legs. Twists of fate brought him and Gabriel together as a team just last year. Recently, Gabriel grew ill with an illness that attacks his kidneys. Thankfully he is being cared for at an amazing veterinary hospital but he needs to be there at least 15 days  more for dialysis and treatment.

Those of you familiar with vet bills are probably agape thinking of the cost of that.

Let’s help Gabriel and Jake.

You can donate to Gabriel’s care fund here: http://www.razoo.com/story/Help-Save-Gabriel — All funds that exceed the cost of Gabriel’s care will be set aside to help other 4 Paws dogs in crisis.

 

Hello, Internet

We’re still alive.

In fact, we’ve been very busy.

You see, we left the country for a few days and went to sunny, friendly, gorgeous Bermuda!

cruisesunset_marked

This is real life, people!

J is very blessed to have someone who loves him so much that she wants to take him (and the rest of us!) on cruises she wins. Well, she doesn’t want to do JUST that of course, she loves J to the moon and back… Spending a week travelling with him is just an added bonus!

We sailed from Boston on the Norwegian Dawn. I have a lot to say about the cruise but I am biting my tongue. You see, things went wrong where they sure should not have and I definitely want to get some resolution before I post anything.

beachbumjacob_marked

“BIGGER waves!”

What I can talk about though is how just wonderful the island of Bermuda is. The people are warm and friendly, the island is stunning and the beach we went to was like something out of a fairy tale. I never knew sand could be so soft! It was like walking on satin, it really was. The reviews for going to the beach were mission critical to us as the advice they gave proved spot on. We went immediately over with the first bus, enjoyed several hours on the beach and were back to the ship by the time it got crowded. J had the time of his life!

Waves crashed and crashed against the shore as the tide was coming in and as long as he was held, he wanted them BIGGER and BIGGER. I think I see a future surfer in him once he learns to swim for that sensation just settles something in him that nothing else can. Playing on the sand made him incredibly happy too. At one point while holding the umbrella he had to pile sand along my arm. It was cute and funny… A very J thing indeed.

All in all I would say this was a successful trip in terms of fun. On the ship, they have the most perfectly set up little kid pool area. It’s at the rear of the ship and set entirely by itself. You never have to go near the adult pools if you don’t want to which, thank God, because J tried to unceremoniously drown himself in one the first day we were on the ship! He enjoyed the wave motion created by the ship and the fact the water never got deeper than his chest. It was his perfect bliss, minus real waves and sand.

happyjacobly_marked

 

As you can see, he’s the happiest of happy clams.

More soon about fundraising for our trip to Ohio. I am wary of mentioning that because, hello, we just went on a trip but it is what it is. The cruise was a generous gift. We’ll raise what we can to help defray the Ohio costs and we will get there to meet his dog in just a few short months!

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.

Mama Mama

It’s rare it comes in singular.

“MamaMama!” “MamaMamaMama!”

Directly at me. Never to anyone else.

People have names now. I have a name now. This isn’t simple repetition, or scripting taken for conversation, this is purposeful use of words. This is cheerful and always wonderful use of words.

“Mama, happy?” he asks as we sit waiting for his speech therapy appointment.

There was no one else in the waiting room. We were just sitting around and had only just gotten there. Sometimes, he’ll ask something because he heard someone else ask it, or I had just asked it of him. This one he asked all on his own and he waited eagerly for my answer.

“Yes baby, I’m happy,” I said.

“Okay!” and he went back to running back and forth from the door to my chair as he tends to do whenever we arrive.

He and I have been fighting rotten colds and allergies the past week or so. If I cough too much I hear a very loud “You okay?!”….

I imagine he’s retaliating for the millions of times I have asked him the same question. Incidentally, whenever I ask him, I expect him to say “no”. All that is required is an answer for me to know he’s actually okay. If there’s not a peep in response, I know to something might be up.

I do not find myself getting too sad when I see other children about his age speaking in a more expected manner. It’s becoming so much easier to see J’s path, and to see his tremendous progress even in just the past 6 months. The thought of “never” has slipped from belief in terms of J’s future and all possibilities remain open. Are there challenges? Will things be unconventional? Absolutely.

Since when is the road less travelled necessarily a bad road?

He finds his way, and as his Mama Mama, I could not be more proud.

Far from the Tree

The IEP meeting for next year’s services, etc. was held this past Wednesday.

To say J’s progress has been brilliant feels like an understatement. He has done fantastic in his first year of school, meeting milestones and exceeding expectations like it were his job to do so. I could not be more proud of him. The plan for next year is solid and I will write more about it at a later time as we’re in a bit of a tiff with a member of the team. Good times, right?

Anyways, it always cracks me up when his teachers or therapists bring up that he hates doing art projects. When I was his age, that was my main method of communication. I drew, I painted, I colored… it was where I wanted to be and where I felt safe. You could leave me alone in a room with art supplies and I would be content for hours. I was even good at it, too.

The being good at it came back to bite me. Parents, let me warn you gently: If your child shows aptitude in something but not passion, please leave it lay. I became a trained dog it felt like when it came to art and now I have all these skills I hate to use because it just reminds me of being forced to act on command and to the demands of others rather than where my own style or wish wanted to take me.

Back to J though, he could not be further from the tree I guess. He has such talent in terms of movement when he’s willing to trust himself and is turning into a gifted mimic. He has great strength and agility as well as tremendous, overwhelming charm. It is amazing how unique he is and how very, very different from the trees he fell from he seems.

Got to stop writing, he’s playing Cut the Rope 2 and trying to nom my arm off every time the little monster eats the candy.

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