learning to navigate the world, j-bear style

Month: October 2013 (Page 2 of 2)

Auctions! @RedSox and @ThesaurusTea fans take note!

Good evening everyone!

We have TWO fantastic auctions to help finish our fundraising going on right now! You can find them here: https://www.jbearandme.com/Auctions-for-Team-Jacobly

Auction 1 is an autographed picture of Red Sox pitcher John Lackey, a part of Bearded Vengence as our Red Sox go from Worst to First and head to the World Series!

Auction 2 is a gift basket from Thesaurus Tea! Our friends from Montreal have generously donated a basket of tea to the winner of this auction. You can even mix and match your preferred teas from their varied and wonderful selections. That, and who doesn’t like dinosaurs? Check them out at http://www.thesaurustea.com

Auctions will run until 10/30/2013. Details are in the auctions and if you have any questions, please email me at mamabear@jbearandme.com. If you win and wish to make your donation tax deductible please contact me for details so we can get the donation made in J’s name while you still get your deduction.

Also, if anyone can tell me why my site is running poorly, I’d really appreciate it!


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.

The Hard Times

I can’t honestly tell you whose hard time this is actually, whether it’s mine or J’s, but they seem so intertwined at this point it feels impossible to separate them.

J’s behavior the past couple of weeks, as I think I have noted here before, has been off the charts. It’s been off the wrong side of the charts, too. It’s been bad. Screaming, crying, kicking, hitting, trying to break things, trying to break himself, meltdowns, the whole nine yards. This is not all happening at once at any given time but a lot of it does happen together or in succession.

Some of it is tiredness. This child is just 3 and he maintains a schedule not unlike a full-time adult going to a typical job. Some of this might be allergies, for he’s been congested and extremely sensitive to weather changes. I should pay better attention to this because his episodes with allergies happen generally when mine do. Some of this could be frustration with communication. He’s having a need and I am not understanding what that need is and therefore failing to help him fill it. Some of it could just be him being three. Some of it could be demonic possession. The list goes on and on.

The hardest part is the hurt that comes with this all. I bear the worst of his behavior. If he is going to lash out at anyone, it’s going to be me. He tries to break my things, smack my face, claw my ears and neck, pull my hair… Yet I know it’s not an intent to hurt. He’s trying to communicate and it’s coming out all wrong. I am the safe place, because mama is always there. Mama still loves him even after he’s been like this to her, so if he’s going to lose his last marble it’s going to be where he feels safest to do so. And all I can do a lot of the time these days is sit there helpless, because I don’t know what he needs.

We do deep pressure/massages. We do play time on the Yogibo, which has been a lifesaver to us. We do iPad activities or watch cartoons on it. I have him sit in a box squished in with pillows and stuffed animals while he watches to try to give him that pressure and comfort he craves. We do snacks and games and we try to use our pictures that his teachers helped me out with. We do a lot and it still comes up short these days.

This is what scares me. I know it shouldn’t, because in the grand scheme this slice of time is truly miniscule but the what ifs can overwhelm. What if I am losing my sweet boy and gaining a moody child prone to violence over the slightest thing? What if I can’t do this? What if I am not doing enough for him or worse, what if I myself am just not enough for him?

I mean, I do still very much see my little cuddlebear come out a lot. Yesterday, we worked on identifying emotions. I held up the page of pictures his teacher had sent home and we identified them each in turn… but he hung up at “silly”. Every time he got to “silly”, he said “Jacob”. Now, I thought it was because I kept calling him silly during the activity but then this morning, without hesitation, he did the same thing. He equates himself with silly. How can I not love that?

But how do you chase away the shadows that threaten to overwhelm, even in light of such sweetness? I don’t even know.


A disclaimer: I write about the good and the bad not because I am about to have a massive mental break but because they’re the reality of life with J. I’m okay, I promise, and there is nothing I write about in this blog that I would not myself tell my son. I know he might one day read this and that some of it might be hard for him and I hope to be right there still holding his hand when that day might ever come.

Charity Auction for Team Jacobly!

We have been lucky enough to receive an autographed picture of starting pitcher John Lackey to auction off for Team Jacobly! We’re ever so close to finishing our fundraising and we have done this all without a lick of media support. No media outlet wants our story…


… So let’s prove we don’t need them and they missed out an an AMAZING kid.


You can find details of the auction here: https://www.jbearandme.com/auctions-for-team-jacobly/?ult_auc_id=1583


— Bidding starts at $100 and goes in $10 increments.

— Buy it now is $300

— Payment is via PayPal. If you wish this to be a tax deductible donation and you find yourself to be the winner of the auction please contact me at the close of the auction so we can make arrangements!

— Please tell everyone you know who might be interested!

Now, I have an email in my inbox to respond to about a fabulous tea related auction item that I hope to post about soon. I need this fundraising to conclude because I am finding myself woefully depressed about various aspects of it. I need it to conclude so we can press onwards.

The (in)Famous J-Bear

So here I am. Still tired, still struggling with some things but I am here. And I couldn’t resist sharing this story.

Today as I walked J in to school we met up with a boy who was maybe in the 5th grade or so. Nice kid, very polite and friendly and J seemed confused by seeing him outside. I just chalked it up to him not being used to seeing many other children outside when we’re heading in as the majority of the school starts their day before the preschoolers do.

We walked onwards to J’s classroom and a little way ahead of us, this older boy stopped and turned back. He told me that he works with J sometimes and that he’s a very great boy, always working very hard and he loves working with him.

Well, cue my jaw hitting the floor.

I thanked the boy, as did J, and the boy went off to class.

Now, of course I think my son is the sweetest most awesome kid to ever kid. I’m his mother. And I know he is generally well liked by others too. It just never ceases to astonish me the relationships he forges with others despite having poor expressive language skills. He figures out ways to make it work, like it’s no big deal, and that will always kind of blow me away. Most grown adults, if placed in his shoes, would fall apart without the ability to easily express themselves in an expected manner. I don’t know if it’s the wiring of his brain, the way he’s adapted, or just the fact he’s always been this way that makes it so easy for him but it just seems like that: easy.

His teacher said it best though: He’s known for being a sweetheart and is well liked. He is not actually by any means infamous except within his own home. Part of that makes me quite sad, because it reminds me that there’s other children who are seen as “infamous” because they are not easy to relate to. It is sad because there is probably such a beautiful mind within that child, eager to be shared, and yet their outward struggles make most people not want to bother. J has a lot of future ahead of him. There will be people to whom is he one of those who struggles; who is not “easy enough” to know. This will hurt him at some point I’d imagine but I hope he always has that strong core of people there holding him up and reminding him about how much good he has to share to lessen the blow.

Meanwhile, I hope he gravitates towards some of the children others overlook. Sometimes, J is smarter than the rest of us. He notices awesome we frequently miss, and he would not miss them.

This went way more rambly than planned. I think that could be said about this whole blog!


Fundraising update to come shortly. We’re not done yet, but we have an auction going on that sports fans might be interested in, particularly Red Sox fans. Stay tuned.

Dr. J-Bear and Mr. Hyde

This is my life with my son right now:

Mornings are mornings. No one likes mornings, according to me. He gets up, he goes through eating his cereal and drinking his milk and we time everything by when Justin Time comes on Sprout. No joke. Sprout, don’t ever change your programming. We do wash up, get the backpack and we’re off to school. There might be some minor fussing about the washing up but it’s become a game now so no huge deal.

He is awesome about going to school. He hops out of the car all happy, we point to some things in the sky (bird! cloud! plane!) and we head into his classroom. He greets everyone happily, does his tasks and bids me farewell. Apparently after I leave, he’s the best boy to ever boy, too. Listens, does as he should, is generally just a peach.

Then he comes home.

What happens between school and home, I don’t know. It’s like I end up with a completely different child. He is angry, grumpy, refusing to listen, refusing to do anything besides tantrum and hit his head on anything. By anything, I mean the floor, the furniture, the brick fireplace, the tile kitchen floor… Can you understand my horror here? It’s a miracle he’s not truly caused himself grievous injury here.

Now, this was starting before he ever got sick so my want to chalk it up to that is kind of wrong. His teachers report nothing different, nor do his therapists. Is it just because home is a safe place to lose his mind that he does so? This all culminated in a 3am massive meltdown tantrum this morning. He was bull that I would not let him tear at my face and rip at my hair as a stim. I moved him away from me gently, told him no, and turned away from him which ended his world.

I’m at a loss. This is tough stuff. I talk him through feelings and through pretty much everything we do. I never stop talking. I am obnoxious. Everything we do, I’m half narrating. I make sure to use simple terms, everything. The only thing I am not using is pictures lately, so maybe we need to improve on that?

I am not saying my son is by any means a demon child, I just don’t understand how I went from my mellow guy to this angry little bear who wants to rip my face off as much as he wants to play with me.

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