J-Bear and Me

learning to navigate the world, j-bear style

Month: December 2013

Doing Things “Right”

Here’s a helpful guide to whether or not your child is playing with a toy “right”.

Ready?

1 – Are they causing harm to themselves or others?

2 – Is the toy being shattered into a million harmful pieces?

If the answer is “no” to both of the above questions and the child in question (or children, sometimes this is a group effort) is having fun… Congratulations, your child is playing with their toy “right”!

When my son was diagnosed a year-ish ago, this was a subject that kind of drove me nuts. He wasn’t playing with toys correctly. Granted, some of what he was doing wasn’t good for his mind. He was obsessing over strictly lining things up and growing agitated/upset, therefore causing himself mental anguish, whenever anything wasn’t just so with how they were set up. I get that this was something he had to work through, and through the intervention of some amazing people, he has. The trains of random objects still appear but it’s light-years away from what it was. There’s no stress around them, they just happen for fun.

If my son is doing something that causes no one stress or harm amid playing with the many toys that are crowding me out of my living room*, why should I stop him? Why should I stigmatize anything? So what if he’s rolling chip clips down the ramps he has for toy cars, he’s having fun saying “whee!” and cheering for them. It’s no skin off my teeth when he drives his new Pufferty train atop the tv stand and helps the train to “fly” around.

It’s imaginative play, the thing the experts claim children with autism have severe limitations on, and I love every single way it manifests.

The pictures on the boxes, they’re suggestions. What these kids come up with on their own, that’s just fabulous and amazing.

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*= I am mostly kidding. I can still gain access to a place to sit in the living room, so I am only sort of crowded out of the living room. I’ll be completely crowded out when the rest of the toys are put together, of course! 😉

Merry and Bright

Tonight as I worked on our Christmas dinner, I coughed into my sleeve.

Whenever someone coughed, J asks immediately “okay?” and he will persist in asking until you answer and reassure him you’re okay. It’s my fault he does it, as whenever he gets coughing I ask him the same thing. The habit is completely endearing to me when he does it though.

Anyway, tonight I coughed. And he said, “okay?” and I was busy with what I was working on and did not answer immediately.

And he said “fine, mama?”

Everything stopped, if just for a split second.

One year ago, “mama” was only said as a fluke. It was said once and forgotten. The past few months, “mama” has been said when prompted, and with intention and understanding. I can ask him to bring something to mama and he will bring it to me and so on….

But… “Fine, mama?”

My son asked me, by ‘name’, if I was okay.

The boxes under the tree, he’s making it a habit of trumping anything that could be in them.

Yes, baby. I’m more than fine. I am wonderful for you having asked.

Merry Christmas and Happy Holidays, everyone.

The Great ABA Question

J had a visit with the developmental pediatrician this morning. All is well, a game plan has been made for the next several months and we agree on a lot of things…

… Except ABA.

You see, the constant push is for what feels like unending therapy of a mostly Applied Behavioral Analysis variety for children like J. I see the reasoning behind this, to a point.

But what if that’s not him. What if that is not in his best interest to have non-stop interventions, every day, with no chance to be J? What if even through the best of interviewing and every effort to the contrary, we still end up with providers who are constantly focused on what pieces of paper say and not what the child before them needs, or even who the child before them is?

We were spoiled, you see. Our first experience with ABA is something I have written about glowingly before and will continue to do so. Catherine did not walk in and try to fit J into any paradigm. She looked at the little boy, and saw what the little boy excelled at and where he lagged behind. It was a whole child approach to behavioral therapy that makes him just plain soar.

So I have a lot of fears about what adding even more therapy to his very, very busy days might do, especially if we cannot find the precise right provider. I am scared of my son being pigeonholed into things that sound good in a research paper but aren’t really practical in the real world for him. Yet, those fears all told, there’s benefits that could be gained and I understand that. It could help with his intense separation anxiety (seriously folks, I can’t walk from my living room to my kitchen without it sounding like I just abandoned the poor boy to child eating monsters), his impulse control, his toileting, etc. I am not blind to this, yet … fears.

It’s not like I have zero time, or like I have to decide how to manage this all tomorrow or anything. I figure after the first of the year, as he gets back into the school and therapy routine, I will start calling around and finding out who will work with our insurance and work outwards from there. Til then, I’ll sit here hemming and hawing likely non-stop over what the right choice is. Because that, that is what I do.

Half Birthday Present

Today, J-bear is 3.5 years old! So, we celebrated.

Well, we did so unintentionally.

I signed up via http://www.whoirun4.com/ for J to be paired with a runner. You see, not everyone can run a marathon, or a 5k, or even down their own driveway. J, who as some of you know is VERY physical and very coordinated, would be mortified if placed in a crowd such as a field of runners in a road race. The atmosphere surrounding something that could be so fun for him would make the experience so very challenging, potentially even impossible*.

So now, Ximena will run for him.

Ximena is a mom from Missouri. This Christmas, she is our new friend and she’s J’s newest cheerleader as we are now her’s. Tomorrow morning, bright and early, she’ll do her first run for J-bear and we’ll be cheering her on in spirit from here in Boston.

Are you a runner? Who will YOU run for? I encourage you to check out the site mentioned above and join the waiting list. New children and adults are signing up every day to be paired with runners and it’ll give you a chance to be a part of something pretty powerful.

Welcome to Team Jacobly, Ximena. We’re a funny, silly, random but loving bunch and I’m very honored that you will be running for J!

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* = I should qualify my use of the word “impossible”. I hate using it for anything surrounding J but it would be unwise for me to completely deny that it is a potential outcome to anything we try. The key component in all things is that we will always try, even when we fail.

Ma’s Babbling Again

There is this weird line to tread, as a caregiver.

You see, as Jess at A Diary of a Mom often and rightfully notes, our desire to share cannot ever trump our loved one’s right to dignity, respect and privacy.

Yet I come here, regularly enough, to share our journey with those of you who might read it. It’s a very hard line to toe.

I try to decide on what to write or share by looking at whether or not I would be comfortable with it being in the local large newspaper. I look at it from J’s point of view, trying to decide what might be hurtful or embarrassing to him when he might read this as he gets older. I want this place to always remain a safe space for him, even when there’s hard topics written about, and above all I always want him to know that everything here is written with love and care.

Parts of me are still trying to learn what it is to be the mother to a child who has autism and what  my responsibilities to him are as such. The protective instincts a parent has are compounded in my by my own anxiety disorder. The idea of him hurt, or being hurt, is a massive trigger to my PTSD. Rock, meet hard place, right? Yet, each day it gets better. How does it get better?

Because he teaches me. And oh, does he teach me.

I am learning, through lessons taught in minute gestures or loud screams, what it is my son is and is not ready for or capable of. What is he capable of? Anything he well pleases in his own time, in his own way. This is important. I cannot hold him to the standards of black and white rule books. He will not be a textbook child and this is not a thing to be hurt by or upset about but to rejoice in. He will do every conventional thing he wants and he will likely do it all in unconventional ways.

I am so down for that. I am so eager for that.

And all of this that I never thought I could handle; the parent I never thought I could be has always been there, just waiting for this moment. It is all thanks to not the parents who wronged me but the people who came into my life and did right. Each one has given me at least one if not many of the tools I need to be there for my son, to be the grown up he needs and to be ready for the highs and lows of his unique journey.  I know not everyone believes in God, and that’s alright, but I do. There’s something to this divine plan stuff, and He must have been planning a long time for this little boy. He has something special to give the world, and I just hope in sharing his story I am doing right by him and right by those with whom we share it.

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So this whole post isn’t weird and sappy, a J milestone:

Last night, J sat on the floor playing with his little airplane. He flew it around, the way you expect kids to do and in the way he rarely has before. Moments later, he was doing the same… with his toy tractor.

Fly on, toy tractor. Fly on. I love seeing his imagination juuust starting to peek through. It’s a beautiful place, his mind. A beautiful place indeed.

Crime Scene J-Bear

So if I don’t laugh about this stuff I might cry about it. Laughing’s more fun, right?

Today, one of the rare days I drove more than a few miles from home while J’s in school I get a call from the school nurse to come get J. He had vomitted a couple of times in class.

When I got there, she asked me “How’d you get here so fast?!” as I’d warned her I was south of the city when she called. I answered “laws were broken”….

… I forget that the school staff doesn’t know me well enough to read my sarcasm. I likely have a reputation now.

Anyway, back to J. I walk into his class and immediately knew he was sick. He was cuddled down in a quiet area of the room on a beanbag while one of the aides soothed him. He was not his usual spunky self. As he got up slowly to come meet me, I saw the wreckage he wrought upon the classroom. The way they cordoned off the area really did, truthfully, appear like a crime scene. Strategically placed chairs, items used to block the offending area off from small, inquisitive people… I had to laugh. I fought the urge, but man. I failed. Thankfully, I think the aides all had a very similar sense of humor. I believe you sort of have to, to work with young children.

I bundled the little monster up, grabbed his bag of puke laden clothes and we went home. We weren’t home half an hour before I was all in a panic about how fast he was breathing and just how off he was. Thankfully, his doctor’s office is 5 minutes from home and we were there in a hurry. The nurse practitioner, who is great, saw him and diagnosed bronchitis pretty quickly. I was both relieved and scared! Relieved it wasn’t something a lot more serious, scared because this will be the first exposure he’ll have to an antibiotic since birth.

Only J could make getting sick result in crime scenes being set up and snowstorms being braved for doc visits, let me tell you. Never a dull moment. Thankfully, he’s showing a little of his usual self right now as he plays trains. I bet he falls asleep fast tonight, especially once we get medicine in him!

Oh. This all does mean one bummer of a thing – J won’t get to go to Kioko til after the New Year unless creative rescheduling can occur. I hate that. 🙁 He’ll hate it too when he realizes he’s not seeing all the people he adores!

Ice

The subject says it all. We have entered the season of my arch-nemesis, ice.

You see, I am not a graceful person. I can fall all too easily on dry land, so you add ice to the equation and I am a hospital bill waiting to happen.

This is compounded by being constantly escorting my fearless little bear. Oh, there’s snow on the ground? Let’s go for it! Oh, there’s ice and I’m slip sliding everywhere? Whatever, it’s still go for it! Meanwhile, we live on an extremely busy intersection, then drive to a very busy school parking lot…

Can you see how I am high in the anxiety department about ice? Wrangling him in just rain can be a feat of will, but come ice… Wow.

I need me some Yak Trax or something.

This blog will, at some point, have interesting content again. I swear it. Right now I just needed to shake my proverbial fist at the heavens and yell “damn you, ice”!

Somewhere my dearly departed Nana Anna Ryan O’Brien is wondering just how many times my parents dropped me on my head, I just know it. And that’s okay.

Ho Ho Ho

Little bear is a man after his Queen Nana’s* heart.

You see, he loves Christmas. More to the point, he loves Christmas decorations.

I discovered this last year when, upon arriving for what would usually be an ill-fated trip to Wal-Mart we discovered the inflatable decorations outside. He was so very excited. We spent a good fifteen minutes interacting with them outside the store before going in to attempt shopping. Shopping turned into a total success, complete with him sitting in the cart’s seat, thanks to the Christmas decoration part of the store. The lights, the trees, the ornaments… Everything just amazed him.

It’s all the same this year, he’s just bigger and a little more vocal about it.

The lights and big decorations seem to be his absolute favorite right now. He actually almost got himself into a lot of trouble a week or so ago trying to bolt across a local highway to go see an inflatable Santa and inflatable snowman on the other side of the road. It was scary but it made the point clear – decorating for Christmas this year was going to be non-negotiable.

Now, we have a tree. The fake sort that you put in each little branch one by one, the sort of fake tree that screams to little boys to be taken apart. Between that, the string lights, and so on … Well, maybe I am just trying to make myself feel better about getting a new tree that already includes the multi-colored lights and the branches do not easily come off of.

So tomorrow morning, little Christmas Bear will wake up to a shiny tree in the living room that he’ll get to decorate when he comes home from school. Let’s hope it goes over well!

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*= Queen Nana is the mother of my best friend since we were 15. I call her Queen Mum for various reasons and she and her husband were there for me when I had no true guidance from those who brought me into this world. She would put up two dozen or more Christmas trees every year, with help from her elves of course, and thus will always be known for her love of Christmas decorating amongst many other things.

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.

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