J-Bear and Me

learning to navigate the world, j-bear style

Tag: j being j

Conversations

I keep going to start a post with the phrase “So I was having a conversation with my son…” when I stopped and realized that, hello, that phrase deserves a post in and of itself.

One year ago, words here and there accompanied by sign was where we were at. This wasn’t a terrible place, but it was a challenging place. His world was so closed off that letting people who did not doggedly spend hours with him get more than a fleeting glimpse the wonder that is J was difficult to impossible.

Then, six months ago, we had words. Words were coming with regularity. There weren’t a lot, but some days he was repeating and trying them out and other he was using this small handful of words purposefully. The progress was great. He was working hard, trying to do his best with what he was given.

Now? The path my son has travelled in this past year is tremendous. I cannot even try to measure the distance because that is just how far it has been. The world laid down the mightiest of challenges to J and rather than inch along slowly – a pace that is perfectly acceptable, mind you – he blew along like a charging bull! We have spontaneous words now, sometimes coming in two and even three word combinations. We have some great listening and simple direction following emerging. He is playing games with easy instructions, he is singing songs with that can be clearly deciphered by people who don’t see him every day, he even makes attempts to communicate with strangers.

I know at least a couple of the wonderful people who helped him to get to this point read this and wow. J is showing off the fruits of your labor and his own so beautifully. I have conversations with my son is something that I thought was in our distant future, not in our today and now. Between you all – his Early Intervention team, his beloved Building Blocks ladies, his Kioko therapists and his team at school – you’re all making him just blossom and I know I shouldn’t be but I am so in awe and so in love with the beautiful little boy who is getting more beautiful by the day.

So I had a conversation with my son, and it was glorious.

Second Guessing

I am the jumpy sort that second guesses everything I believe or do again and again. I overthink everything around me and generally wallow in the “wonder” that is hypervigilance most every moment of every day.

This should come as no shock to anyone who has to deal with me in certain capacities. I will overthink my actions, my son’s actions, behaviors, every little thing. Other things I don’t seem to think at all about and there’s never a wise balance between the two.

Anyway, this week we were visited by one of the most amazing people we’ve met since this journey started. She dropped by, in her free time, to check in on J and to discuss some troubles he’s been having. Her analysis was spot on I feel in a lot of ways and she cut through a lot of my worrying and overthinking efficiently and compassionately. She never diminished my concerns at all, or my struggles but instead took them in and responded to them with compassion and clarity – two things I sorely needed.

But with all the things we struggle with, we still have moments of pure wonder. Today, my son did something that I’ve never seen him do. I asked him to make his teddy bear dance… And he did. I asked him to make his teddy bear stand on his head… and he did. I asked him if his teddy bear could turn around… and he helped teddy turn around.

Now a lot of people would find me daft to learn this made me cry, but this combined with everything else just shines such a light on how hard he’s been working and how very, very much he has been absorbing and learning and taking to heart. His language skills have taken off, especially his receptive language though his expressive skills are getting there too. I have conversations with my son. I don’t care if no one else follows or gets them, we do and every day more people are understanding him too. He greets strangers, he engages people and tries in his own way to draw them into his world, even if that sometimes means he pushes them in an attempt to lure them into a game of chase.

I am just overwhelmed, and yet I second guess every change because that is just what I do. However, when he turns around after a week of rough times and shows that not for a moment did he ever close off learning and growing. He’s working so hard and I cannot fully grasp the effort he’s putting into every day life on top of schooling. This of course isn’t an excuse for bad behavior, but it’s an explanation for the times it comes when he is just spent. Now to find the balance between helping him understand appropriate ways to express being overwhelmed or tired and disciplining when he is just acting out to act out.

And to not second guessing my intuition and understanding on which is which. That might be the hardest lesson of all.

Random J-Bear

In an effort to lighten things up, a conversation with J the other night begs to be shared. He was sitting watch a cartoon where one of the characters had just gotten a new puppy. The conversation went like this:

me: You’re going to get a dog too!

J: Dog!

me: What will you call your dog?

J: Chicken!

I was stunned at the answer but left it alone, carrying on with dinner making and such. A little while later I did ask him again what he’ll call his dog and got the answer of “chicken” again but have had no answers to the question since. We’ll revisit that in a few months but, future dog, if you end up named Chicken I am half sorry and half amused.

————–

There’s a lot of routine and even some could say ritual involving days with my little bear. We have our routines surrounding various things including getting ready for school, going out somewhere, what we do when we come home from school and so on. One of our little rituals of late reminds me of an awful episode he had long before he was I think even in early intervention. He was under 2 and just walking at this point at least and he had just lost his mind at the idea of getting immediately back into the car when we were at a store in Northborough. We needed to cross the parking lot, the long way, to get to the grocery store after picking up some little boy necessities at Babies R Us. He could not find calm at all so across the parking lot the long way we trekked.

Now, like most modern fancy parking lots there were landscaped areas that segregated out streets and what parking areas served what store or cluster of store. They have shrubs and trees and mulch and all that fun stuff. We had to walk across all of them in our path, this day. We also had to say hello to every tree and bush.

This brings me to today.

Every day, J stops to say hi to the tree in front of our house. He says hi to the trees at school sometimes, but he always says hi to the light pole and the flag pole. Now, this isn’t a case of him ignoring the people he passes, for he acknowledges them too even if not verbally, but it is a strict part of our routine to say “hi pole!” or “hi tree!” whenever we’re on our way to school.

You would think it would get old after the 750th time doing it but it never does. It’s his “thing”. It gives him peace. It doesn’t hurt a soul and it takes three seconds to do. As long as he doesn’t want to go greet every tree in White Mountain National Forest anytime soon I think we’re all good.

We’ll just be careful of Christmas tree sales for a while.

———————–

Yesterday afer therapy we were driving home and pulling up to the last set of lights before we get home. All of a sudden from the back seat I hear “Oh no!”… which I think I have heard out of him maybe twice. I’m looking around, baffled because I could not immediately see what he was reacting to. Then I looked ahead, about a block up, and saw the 18 wheeler attempting a turn on residential streets no 18 wheeler should be attempting. He noticed it jumping the curb long before I did. We were safely quite far away and no one was hurt in this driver’s act of whatever he thought he was doing there but wow… I have to say I am pretty impressed little man caught that. I wasn’t even sure if that’s what he’d been reacting to but when I said “oh wow, the truck!” he said “oh no!” again.

He gets it. Even when we don’t.

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And that’s a little bit of our random daily life of late. Nothing too spectacular. He had a tummy bug last week, which stunk but hopefully we’ve seen the last of that. Still having a lot of bedtime struggles, namely keeping him asleep without him destroying my sleep, but there’s a bigger weighted blanket on the way that I hope will help. If not, it’s back to the drawing board.

I still have some small fundraising stuff to update about and I’m getting there, slowly but surely. Emphasis on slowly. I am, it seems, part snail these days.

The Spectrum

I saw a graphic on Tumblr tonight and I have to say, it bothered me.

It likely bothered me more than it should.

I went back and forth about posting it here but here it is, because I am hoping this can teach people how autism isn’t:

offendingspectrum

 

Take a moment to really study that.

This is such an insult to all people’s intelligence. It’s an insult to those who are autistic, because how much more pigeon-holed could they be going by this chart? This doesn’t show a spectrum, it shows an ugly, untrue line of bad stereotyping.

There is a piece of paper in my possession that says J has “classic autism”, those words on the far right of the “spectrum” up there. Yet not one week ago his teacher was telling me how he just soaks up learning like a dry sponge soaks up water. He learns constantly and voraciously, both in typical and atypical manners. What a huge disservice I would feel done unto him if I were to find his classroom professionals followed the chart above.

These children, adolescents and adults carve their own paths… just like their peers. They do it in their own way, in their own time, and it is starting to really bother me that the pressure is there to “train” my son to be “normal”. What is wrong with J being J? I love J being J, even when he’s challenging me to my utter last straw! I appreciate the tenets of Applied Behavioral Analysis, for example, but I appreciate the focus on the individual and their needs more. Above all else, my son needs to learn that being himself is above all, first and foremost, important and good. He needs to know that at least within the walls of his own home, apologizing for being himself is not going to be necessary.

So I will do my best not to mention autism when we are out. I will stand back and let him learn, whenever it is safe for him to do so, how he needs to cope with things. I will be his handhold when the world gets overwhelming, but I will not shackle him to a diagnosis that is just a definition of part of who he is. It’s as much a part of him as his eye and hair color, as his voice and his laughter, and I have to learn as his mother how to be the most supportive person I can be for him in a world that is not always going to understand.

This is why wandering the internet is scary, folks. You wander general parenting sites, where everyone can be so very holier than though. You wander special needs parenting sites, that can be either extremely supportive or extremely engaged in the Pain Olympics (note: Everyone loses when engaging in these. Pain isn’t a competitive sport). You wander into the autism specific sites, and get hammered from both sides. And then you find the smaller, more intimate communities and realize there are people who will listen, from all sides, and who will have discourse.

Man am I thankful for Diary of a Mom, 4 Paws for Ability and my June 2010 parenting group for showing me there can be sane groups of parents who don’t have to be fully like-minded to show respect and understanding to one another while helping each other through the hard stuff.

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