J-Bear and Me

learning to navigate the world, j-bear style

Tag: random (page 1 of 3)

This and That

I am really good at these posts that have a lot of random bits but not enough of each bit for a real meaty entry. Buckle up and hang on for the ride!

——

J has been fighting within himself for a couple of weeks now.  It is hard for me to explain what is going on. People in general, no matter how they are wired, can often encounter this rift between what they are feeling and their ability to express said feeling. It seems right now that for J, that rift is more of a large, deep and tumultuous gulf. It is understandably upsetting and frustrating to feel things that you want to express and let out but you do not know how to do so. This often leads to outbursts, to acting out, to just him not being himself.

Frankly I cannot blame him. I’d be equally inconsolable if I felt lost in my own skin. I just don’t know how to reach him in these moments.

I sit, patiently waiting. I set boundaries and make my expectations as clear as I can. I get frustrated, too. I get upset. I’ve broken down and cried once with him in my arms. It’s not pretty, it’s not perfect, it’s not fun.

A lot seems to circle back to grief. Loss is becoming real to him. J’s way is to slowly come to a full realization of an abstract, difficult concept. He’s always observing, thinking and putting pieces together but those abstract emotional things are plain hard for a concrete, linear thinker. He’s realizing that there can be massive upheaval. He is realizing that his beloved girl was forever taken from him. He cries for her regularly and grows possessive of his precious stuffies.

No matter how long you saw this coming it still shocks the system and weighs down the heart.

We have light now, though. We will get through this.

——–

Who knew light could arrive on four prancing feet and covered in the softest, curliest fur?

J and I volunteered at APAW last week and for the first time in months, we both were light and free. J was so proud to have purpose. I hold back tears typing this because I had not seen that centered boy since June. He listened well to Jillian, APAW’s caring leader, and greeted the volunteers and their dogs amiably as well as some clients. He beamed over kisses doled out by sweet Empathy, a poodle in training, and chatted about the different dogs the whole drive home.

The class made it easy to realize that no matter how long our wait for his perfect partner is, it will be worth it. We are with people who care for him and his best interests now. What his needs are matter first and foremost when it comes to making a great match for him. There can be no deadline set for this. An arbitrary date will not produce perfection, it will merely limit prospects and possibilities. Would we rather a partner sooner over later? Of course we would. I would be lying to say bringing home a puppy tomorrow wouldn’t put me over the moon… But I am realistic. We engaged APAW because they make it their business to be subject matter experts in what they do. They have welcomed us into their fold and let us help in any way we are able, so the love we have ached over carrying since Brookie was snatched away will not go to naught. It will be shared with all these lovely poodles we meet and we can happily watch them on their journeys.

Do I wonder sometimes if a pup I meet will be J’s one day? I’d be lying to say I didn’t, but it is easier to immediately think “wow, they are sure going to make someone so happy”… Because they are, no matter what their role. Someday, it’ll be J’s turn and we’ll be okay until that day comes.

Puppy kisses help the time pass a little faster, though. I cannot complain about that!

 

—–

Those of you who have experienced life with IEPs for your children or as an educator know that every 3 years, re-evaluation must occur. J is in the midst of that right now and let me tell you,  I am nervous. It came as a great relief to learn that his beloved preschool teacher is doing much of the evaluating for him, so he is agreeable and trusts her. I know how much J has grown and how much he’s gained. He is so smart and quick, it’s just always nerve-wracking to see what people put down on paper to attempt and quantify your child. It’s not hard to see where his weaknesses are but here’s hoping that his strengths are seen and celebrated, too.

Training Interlude

In lieu of a proper training post, please accept the musical stylings of J-Bear as seen by our class this morning. Mama is tired, and posts will resume tomorrow:

 

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.

Odds and Ends

For those just joining us this evening, there is a fundraiser you can find information on here: http://www.jbearandme.com/fundraising-with-thirty-one/ — It’s a Thirty-One party and 20% of all the sales go to Operation J to Dog. The party ends April 24th!

——-

J actually missed school today because of, get this, an extreme aversion to pants.

Don’t we all have these days? Today just happened to be his.

Pants eventually did happen, but it was a tough day. There really does seem to be a pattern developing between unsettled weather and J having a more difficult time coping with things that otherwise are not an issue. I am hoping that this passes as the weather passes but it remains to be seen.

——–

Progress is the name of the game for J of late. Listening to how his language is developing is quite simply fascinating. He is communicating, with people he is comfortable with, in his own way and in his own time. He mimics like a pro of late, and he uses what language he does know to try to make his wants and needs known. “Get out!” when I am not turning into the parking lot he wished me to, “Push!” when he wishes me to be in a different lane while driving, “Hop on!” to demand me join him on the bus (LOVED this one)…. Lots of little phrases and mega personality.

Today he met several babies when we were out and about and he was so curious and actually initiated teaching one small girl how to take turns! This is huge, both for his communication struggles and for the fact… he’s not even four, and what child of that age group is an expert in sharing?! I was blown out of the water and proud. He can be a bear when he wants but at heart, my son is so very sweet, caring and gentle. It amazes me. He has a lot of cards in his past that pull towards a manner very opposite that and he’s proving he can overcome genetic predisposition in that regard.

——–

There are days I worry about the service dog decision. I wonder if I am overstating need and so on, because a brain on an anxiety disorder is frankly a jerk and loves to create doubts and fears. This past week it has occurred to me that the dog could provide something huge for J I had not anticipated and that is a constant to allow for him to better generalize his skills. The dog can be everywhere with him, and provided that others will be willing to be consistent handlers, he or she can go where I will not be. This is tremendous for J. It will help him carry skills that only occur in specific locations with specific people translate to other places and folks. It will be the invitation for him to open more doors and leave them open, sharing himself with the world at large.

That is so very exciting! I do want the world to see what a hilarious and engaging child he is when he’s with those who know him best. He’s trying to be it everywhere, but something gets lost in translation. It can be yet another thing his dog can help with.

———-

Opened with fundraising now ending with fundraising: Mid to late May we might do an iPad Mini raffle. Details will follow about how to purchase tickets and the date of the drawing. Hopefully this can be our biggest fundraiser to get J to his dog in October!

Grubby Gus

This is J right now, a little Grubby Gus. You see, taking him in and out of the bath involves some serious staging and planning. You cannot just say “okay bath time!” and leave it at that. The bathroom has to be prepared, the toys laid out, and then he happily gets in the tub.

Getting out is where the warfare begins.

Let me tell you, almost forty pounds of chaotic three and a half year old can be as powerful as an elephant when he gets mad. Getting out of the tub makes him so very mad. I think you could throw all his Thomas trains and stuffies into a bonfire and get less a care out of him than the ire ending a bath draws.

So I have Grubby Gus, hair going seventy-two ways from Sunday while I mentally dread preparing to help him bathe again.

Please note my words, though. He is slowly learning how to bathe himself, which is good, but he’s all boy. Expecting him to do a good job washing his hair and face and self is just slightly outside his realm of care. Care, not possibility. Little kids are in part made of dirt after all, he just doesn’t care to change that.

Now please pray for me, as I put on my battle armor and get ready to run a bath.

—————————

A random note: J’s teacher reported at least one (maybe more) of the staring episodes having occurred in school. This is the first time someone outside the home has definitively seen him do it. I’m awaiting details as to what was going on, etc. and will be keeping a log. Never a dull moment.

Baby

Everyone, meet Baby:

baby

One night, when J was boycotting sleep for the 750th night in a row, we were laying in bed looking at pictures from the ol’ internet. This guy came up, thanks to a post on Reddit*. He about jumped out of his skin with glee! “Baby, baby, baby” he repeated over and over again, awwing and oohing over the cute little baby seal.

This is what my days consist of. This image is now the lock screen image on his iPad. When he’s not himself, if he sees this picture, he turns into smiles and coos of “baby, baby”…

… And I have to remind myself that this is our real life, as odd as it is.

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.

————————-

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.

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.

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.

————————

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.

Random

And here is where, dear reader, I confess to you that I have been struggling and struggling painfully.

I’ve mentioned it before and it bears repeating that I live day to day with PTSD. Specifically, Complex PTSD. For those unfamiliar this is the best link I have found to describe what it is that I am dealing with and how it impacts my life: http://outofthefog.net/Disorders/CPTSD.html

There are things that happen in the course of caring for J that can set off my symptoms like nothing else and I know, in logical brain, that this is not his fault. Of course it’s not his fault. He no more asked to deal with autism than I asked to deal with what I deal with, and yet, here we are paired up in life to figure out how to manage both things.

The periods of time in which it is painful defy description. I cannot adequately express to the world around me how much pain I am in, why I am in that pain, and that I am sometimes strictly unable to easily find my way out of it. How do you express a pain you are in to others when one of your deepest fears is them feeling that same pain? It’s not like the description is equal to inflicting it but when you are a sympathetic type of person, you cannot help but to think that even imagining the pain can hurt.

Endless loops, that’s what I get stuck in sometimes.

So that is where I have been. The absolute frustration that is fundraising has not helped. It’s not its fault entirely, for I have not been able to focus on it, but it does not help. J’s behavior has been off the wall in ways I struggle with intensely. He comes home from school daily and just falls apart. His friends at the Kioko Center have some great ideas to help with this and I am hoping, for his sake as much as everyone else’s, that they work. Today, for example, he had a nap and he has been so much better for having had it. During school days though this is not possible, so we must make up for it somehow.

Something will sort out, right?

More on fundraising Monday I hope. I am sorry to all who I am letting down, I am trying real hard here, even if you can’t always see it outwardly.

Older posts

© 2017 J-Bear and Me

Theme by Anders NorenUp ↑

Follow

Get every new post delivered to your Inbox

Join other followers: