learning to navigate the world, j-bear style

Tag: rambling

Getting There

Thirty days from right this moment as I write this we will be packed up and on the road to meet J’s dog.

It is absolutely surreal to write that or say that right now. It is exciting and terrifying and overwhelming and that much emotion is hard to sort out and cope with, let me tell you.

J is excited. We talk about dogs every day and he asks for his friend’s dog Leno frequently. We look at a lot of pictures and using his stuffed animals, we talk about things he might be able to ask his dog to do or things he can do with his dog. He is incredibly amused when the stuffed animal gives him kisses but I am curious to see if that will translate into being okay with dog kisses. Stuffed animal kisses are silly and dry. Dog kisses are silly and, well, slobbery… That’s what makes them so unique! We will see how that turns out.

Next week, we meet with the school to talk about the dog. I don’t want to say much right now as the situation feels very tense but let’s just all pray it goes well and everyone can be on board with doing what is in J’s best interest.

We have the crate. We have toys, treats, bowls, waste bags, and all kinds of other goodies. Now we just wait for the knowledge of who J’s new best friend will be.

The match process at 4 Paws is very, very thorough. It starts when you apply to the program and starts to come into focus after you finish your fundraising. You fill out thorough forms describing where you live, your child’s needs, your child and family’s quirks, and what it is precisely you need this dog to do. You complete a video letting the trainers into your life. They are shown the good, the bad and the ugly as much as you are able to capture it. The trainers make their matches from there and I am so, so eager to see who it is from their amazing program they will choose to be paired with J.

Yep. So much to think about, to the point I can’t even ramble coherently! We have our giveaway running until tomorrow evening when we will draw the winner! Check out The Great Mini Giveaway if you still want a chance to win an iPad Mini that you can use with the heartwarming knowledge that you helped a little boy meet his fur-ever friend. We’ve raised $2400 so far out of our $3500 goal. Thank you to everyone who has helped us so far!

The Heat Is On


if McDonalds fries offend, imagine that’s an organic potato stick!

So here we have a J-bear in the wild, freshly shorn and prepared for intense summer weather. I anticipate he’ll be non-sweatball for exactly 3.4 minutes longer than he would have with his fabulous thick tresses but sometimes, psychosomatic solutions are what has to do.

Right now, as I type this, it’s not too hot yet but I know I’ll be a grumpy, grumbly mess by tonight. That’s how I roll. I am not one of those people who manages being in the hot too well. I have been known to faint. It’s a fabulous trait, but if all I have to suffer of heat for a the next month or so are these three days well… I will suck up, deal and move on.

Yesterday afternoon I spoke with the pre-op intake nurse at the hospital J will have his surgery at. She was a lot of help. She explained some of what will happened, listened and questioned very keenly when I mentioned J’s special needs and answered everything I had to ask with great care and clarity. He will be allowed to take his beloved Fat Kitty in to surgery with him and he will only be just with Kitty during surgery itself. They will spare him from suffering through the placement of the IV by doing it after he’s under anesthesia. They will understand, before we even go in, that he will likely fight the IV and blood oxygen monitor upon waking and are prepared for that. 

Everyone’s biggest worry right now is him screaming/crying. It’s a legitimate worry. His surgery is on his throat after all and him wailing is not going to be anything good for anyone. However, he doesn’t tend to talk when he’s upset – he cries. Between that and the fact he doesn’t drink anything but milk – a problem because post surgery they want you to ingest a clear liquid to make sure it will go down and stay down – he is a likely candidate for an overnight stay. They won’t decide that til recovery on Monday but planning for the possibility seems like a good idea.

All of this to worry about and it’s going to be devil’s armpit hot? My life can be so exciting some days I just can’t stand it. 

Today though, today we have group. Group is good. Group is great. We also have OT at home this afternoon and I am praying that we don’t melt the OT. 

Go forth and stay cool, people.


This is what I live in. Sagas. It’s like living in a soap opera universe only instead of knuckle-biting melodrama over who’s sleeping with who and who’s secretly related to who… It’s just people doing mundane things in highly dramatic fashion.

Case in point:

Yesterday, it was clear that it might be the only day between now and his surgery that I could get little man into a quiet salon to have his hair short short short. You see, J overheats. He doesn’t recognize outwardly when  he’s very warm or very cold, at least not in a way I’ve yet to discern, thus those around him have to keep an eye on him and make sure he’s staying cool or warm accordingly. This is not the hardest of things when he’s cold but when he’s hot, it’s downright scary to me. He gets so hot so fast and sweats like a wild animal. When you add to this the fact he has luscious, flowing, thick locks of dark hair… He becomes the king of the sweatballs in 5 seconds flat. It’s truly amazing, horrifying and gross not to mention dangerous in terms of dehydration, etc.

So off we went to get his hair cut. Did I mention he hates the process? That he shrieks the entire time? Well, he does. 

Salon #1, a so so alternate to the best one we’ve found, was close to his occupational therapy clinic so we tried there first. Closed on Tuesday. Crap.

Salon #2, run by two fabulous ladies in Acton (Kids Kilps)… They’re on vacation. Crap again! Now we’re getting pretty far afield, so I cancelled J’s afternoon appointment.

Salon #3, just a generic family salon… Yeah it had a sign but didn’t actually exist.

Finally, we reach Salon #4, Supercuts in Northborough, MA, by Wegmans. I meandered in that direction in our search because there’s an IHOP right there and he and I both love IHOP. It was absolutely empty when we entered and we were barely in the door before he started crying. The two young women working, whose names I regret not getting, greeted us warmly and understood when I gave them the heads up about J’s autism. Not only was he a little kid loathing haircuts, he wasn’t going to follow our directions without serious work.

They handled his screaming better than I did, no joke. They sat me down in a chair, put a cape on me, then I pulled J onto my lap and they put the cape on him. He may have been crying but he was snug in my arms, so he held a LOT more still than during most haircuts. She used the clippers on him and was done quickly, leaving him about 4.2lbs lighter than when he walked in and certainly more cool. I even remembered to warn her about his red birthmarks so she didn’t think she’d buzzed too close to his head as a hairdresser has believed in the past.

For the bargain price of $24 (cut + tip), he is a LOT more cool right now and I am a lot more relieved about how he’s going to cope with 90 degree weather. He looks great, he’s over the initial trauma of it all and he only cried off and on for maybe 30 minutes afterwards. I wouldn’t be surprised to hear those lovely people at Supercuts cheered over seeing the back side of us heading away from their salon, but at least while we were there we were treated very well and very kindly.

The funniest part was at the end when we were cleaning the hair up off all of the things when J marched away from me, grabbed his cat and dog, and glared at all of us as he firmly huffed out “ALL DONE.”

This kid doesn’t need to say a lot sometimes, those few words said it all and I was torn between laughing at the drama with which the line was delivered and crying for the fact that I was a major cause of his upset in that moment.


In other news, J’s genetics screening came back clean. Whatever caused his autism is not related to any known genetic disorders at this time. The chance of there having been an underlying genetic disorder were very slim so while this is news, it was expected news and we’re plugging along like usual anyway.

Also, we didn’t get IHOP. He was too mad. We had McDonalds at a rest stop in Natick. Cause, well, that’s how we roll sometimes and he loves their fries. I still want IHOP.


Fundraising: Shirts are only on sale til June 7th! Go here: http://campaign.customink.com/teamjacoblyfor4pawsforability and get yours today! $20 to help a GREAT kid!

Stream of Consciousness

This one might be a little more meandering/disjointed than usual, if that is even possible.

I love my son. There’s no disputing that fact – if anyone attempted to do so, I would likely turn into an angry bull over it. My son is why I get up each morning and slog through even the worst of days. It’s as natural as breathing and as part of me as the hands that type this. It just is. 

There are days we are absolute misery to one another though and today, today was one of them.

It wasn’t his fault or my fault. The weather today was dismal, lashing and miserable rain that kept us trapped in a stuffy house except for one awful trip to Market Basket. Market Basket, I will rant about you another day. When we can’t get out and do something, or be comfortable enough in the house to be highly active, it makes for disaster around these parts. 

The culmination of our frustration with each other came when the little guy ran from the kitchen, sling-shot around the fireplace and barrelled at me full bore as I sit on the couch. Before I knew what was even coming I got a face full of his thousand pound solidly concrete head. The cracking sound off my cheekbone was terrifying but thankfully, nothing more than my sense of safety around my careening almost three year old was deeply injured. I’ll have a black and blue tomorrow but nothing stark or obvious. Just an ouch.

The moment he hit me, he started to laugh. He thought my cry in pain and shock was a game. My heart broke. How can I chastise him, scold him for laughing at my intense pain and upset when he genuinely has no idea?! He doesn’t feel pain like I do, for starters, and even though he’s been knocked down by larger kids a few times he’s never been in a situation of intentional hurt beyond needle sticks. He has intense emotional empathy but has no way to understand the messages that empathy sends him, so he reverts to his default – happy/silly. 

And there’s a 99.9% chance I am reading way too far into this. 

He doesn’t hurt intentionally. He has pushed another child exactly twice and each time, he is firmly told we do not place our hands on other people like that. His body gets ahead of his control and that’s generally when someone (usually me) gets hurt. 

I’ll talk to his therapists of course about how to deal with it, it just for now adds to the layers of sad I’m struggling with. 

The rest of the day he was even more clingy, which is the last thing I wanted to be because of the headache and having been clung to all day. He wouldn’t even let me go to the bathroom without trying to be on my lap. I feel like a terrible mother but sometimes, I just can’t deal.

Add to that the times it feels like all my worth is bound up in how many hours worked can be squeezed out of me and how I feel like it is believed I never carry my weight and that leads you to kind of the dark place I am in. 

I keep telling myself tomorrow will be better but geez. If someone upstairs is listening, a little good news to come my way would be a treat right now. 

I am the kind of person who feels very discouraged easily.

Now, if I am working towards something for someone else, I am all about the positive outlook. I can find the bright side of anything and until I am thrown up against a brick wall repeatedly, I keep going towards the declared goal. I am too scared to fail; too scared to not see it through because that is what I was asked to do/what I was hired to do. If the methods are legal and not against my own beliefs… Yep. I’m the one doggedly plugging away at it.

If you give me something that’s for myself, that would improve my own life or something like that, I’ll give up at the slightest resistance. I am used to not being allowed things that are nice, or for being shown things that are nice and good just to have them ripped from me in a heartless and vindictive manner. 

This isn’t drama. Let’s just say the people I should have been able to trust along with people I thought I could trust should not have been trusted, alas. It happens.

This is where I am left. Today, an opportunity was thrown out there that I cannot elaborate on because it’s not something that might ever pan out. However, after the initial surge of “THIS COULD BE AMAZING!”… I saw the response of others and immediately sank to a deep, dark place.

They deserve it more.

They are more worthy.

They’re better at this than I am.

I have no chance at this.

I should just give up already.

And it sucks because this isn’t for me, I should be all gangbusters because this is for my son but those violent, tearing, heart splitting feelings all just burst in like unwanted visitors taking over my brainspace and being as obnoxious as drunken Sox fans in the middle of a losing streak. My brain, so good with logic on most occasions, is just emotionally seeing that ‘good things don’t happen to me’ and that leavings are all I’ll ever have so I better just make do.

I want that to go away, like most people would I suspect, but today I’m just struggling. J has had a Day too, lots of tantrums and crying but that’s more related to being up way too early (thanks Mister Sunshine! Black Out curtains arrive next week!) and being a crank-o-potamus than anything else. 

Tomorrow will, I hope, be better but today I feel unworthy. Today I feel like good things are for other people, and that’s a sad place to keep being brought back to.

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