J-Bear and Me

learning to navigate the world, j-bear style

Month: May 2013 (page 1 of 3)

The Heat Is On

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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.

Sagas

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.

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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.

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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!

Gettin’ Real

It is one week til surgery for J and crissakes you would think I was sending him in to get bilateral hand transplants or something else intensive and crazy.

I’m not saying a tonsillectomy is nothing but we’re not talking open heart surgery here.

So why the hell is this such a subject of near panic for me right now?

This is my second entry about it. That should raise red flags, right? Mental state instable, get brain relaxer, stat … or something to that effect.

The way I grew up you always had to think two, three, twelve steps ahead in terms of trying to predict how things were going to go. This was a pure survival mechanism. If you couldn’t anticipate disasters before they happened the world turned into a very violent place for you so I became all about acting preventatively to stave off ill effects. It’s a trait that I still carry and a trait that while it makes me a very good customer service agent it makes me a horrible person to live with sometimes. I get so focused on crisis management that I fail to realize that I am planning for a crisis that is likely not about to come to pass.

This is what I am doing right now with J. 

I saw the weather forecast for the week and saw that it was going to be very, very hot going into the weekend and panicked. As New Englanders, our homes, particularly the older ones, are not prepared for hot weather. Now I am all “I have to make sure the portable AC works”, “All the fans have to be in the windows”, “The beds need extra sheets and maybe there should be extra sheets for the couch for if he’s sweaty”, “Maybe I should try to get him to drink a different liquid that’s not milk”… 

And on and on crazy brain went, running off the deep end.

I think talking to the nurse during the pre-op interview on Friday will help because I can ask all the questions I may want or need to. I can take out my crazy brain on this poor, unsuspecting soul and get a better understanding of what’s going to happen and more importantly what I can do for J that I am not already planning on doing. We can discuss the likelihood of him staying overnight, which his ENT said was a possibility, and I can ask that a particular anesthesiologist not be allowed near my son after the hell he caused during J’s birth. 

I think at some point before Sunday night I need time to just sit and breathe or I might be a total disaster come Monday and J needs me too much for that to be okay.

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. 

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Feeling down the past couple of days but nothing gets little monster down. Watch out for mister train man himself.

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.

The War for Ice Cream and The Friendly Dog

Two unrelated stories coming up – they just happened on the same day. Those of you who read this may soon find themselves sick of my random stories from our days but when J has a success, it’s nearly always parade worthy to me. 😉

So the ice cream…

Those of you local to the northeastern MA area know about Jordan’s Furniture. This location I speak of is in Reading. It has an IMAX, a trapeze school, a Fuddruckers and an ice cream shop. You know, all the things a furniture store needs, right? Their ice cream stand is Richardson’s, which is so… so… SO good. Seriously. Check out their site. Apologies to my lactose intolerant friends but I have a deep addiction to the ice cream, as my overly ample hindquarters can attest. 

Here’s the trouble though: Jordan’s is very echoing. It is a little oddly lit when you enter, filled with garish colors and the loud sound of the water that makes the Liquid Fireworks show. Whenever the Liquid Fireworks show is going on, there is loud music booming through the area. It’s pretty intense even for me and I am not dealing with even a fraction of what J is. Previously, he is nearly universally done everything in his power to get the heck out of there.

Today, it went a little differently.

We arrived just after his occupational therapy session so he had had about an hour of work on his sensory needs to allow him to be more calm than he usually is. The place was blissfully empty, so we took our time entering and explored very, very slowly and carefully. It took a long walk around the display floor before returning to the open foyer/location of the ice cream stand before he would even consider making an attempt at getting our ice cream. 

When he grew scared of the Liquid Fireworks, we sat down out of the way on the floor and he tucked up onto my lap so I could hold him snugly while he watched. He gradually began to relax and when the show ended, we got up and slowly made our way to the thankfully empty counter. As I held him, we ordered and he watched the young lady make our milkshake.

I might be biased, but that little man earned his ice cream with his good, hard work.

He pulled at me, he said “all done” and “bye-bye” a few times, but with every encouragement to keep trying he kept trusting and tried. This was what felt like the equivalent of asking a grown adult to bungee jump. He eased his way to the edge, glanced over, edged back and repeated the process until he was ready to jump. 

And he did it.

We celebrated with our milkshake and I looked a fool cheering for him when we made it back outside.

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We got home and were walking to our front door when a kindly older lady and her small dog were walking along behind us. Her little dog, a shih-tzu I think, scampered right up to J most curiously. No aggression, mere gentle happy friendliness. J turned around with a big smile and said “dog!”. We asked permission, as we’ve been practicing approaching animals respectfully (sorry C, the cats got the worst of him yesterday) and he got to pet the sweet little dog. The way the two just acted like long lost best buddies made me and the dog’s lady laugh. Even as they walked away, the sweet dog was looking back longingly at J and he at her. 

It was too sweet. I hope his service dog has the same gentle, loving disposition and looks at him with similar adoration.

First Playdate and Gratitude

Today, J had his first playdate.

A friend I made in parent/child group invited us over so our boys (her 2 and my little guy) could play together. Her youngest and J were thick as thieves at group until he turned three about a month or so ago. They are polar opposites in a lot of ways yet that is how they seem to compliment each other. One’s weakness plays to the other’s strengths and with the way little M is growing in leaps and bounds between each time I see him… He’s going to be the kind of guy who ends up showing J how to get on in the world.

This was my bear’s first playdate and mine too. M’s mom teaches me a lot. She is persistent, never relenting in getting what it is her son needs and leaving no stone unturned. She has been the “forward scout” into the local school system and prepared us in parent group for what was ahead of us as our own children get close to three and enter into it. She always listens, always encourages and always offers an anecdote so notes can be compared and we can realize “wow, I’m really not alone”.

It is not uncommon for, after I explain to someone J’s special needs, for them to say “I’m sorry”. It’s not a flaw on them, it’s a lot to take in for those uninitiated so I cannot hold a grudge against those who say it.

To them, however, I say… “Well, I’m not.”

The special needs community has it’s ups and downs when I enter the larger realm of it. The small realm of our local Early Intervention groups and the handful of moms I have met online through blogging and through a moms group I joined while pregnant have shown me that there are great people out there, like M’s mom. We support each other, make each other laugh, and lend shoulders for leaning on when we’re struggling the most with what can be overwhelming loads of fear and stress. 

Would I have known this without autism in our lives? Likely, but I feel it wouldn’t have been the same. Autism has forced me to be a better person to help my son along and has shown me a whole new world.

So, C, thank you. Junebug 2010 moms, thank you. Thursday Sensory Group parents, thank you. Fellow Boston Mom bloggers, thank you.

Everyone who has helped me through this so far… Thank you.

 

Lunchbag Art Strikes Again!

Check out this post filled with awesome!

http://lunchbagart.tumblr.com/post/50788578770/i-did-a-shirt-this-fellow-here-is-my-pal-jacob

I use the word “awesome” a lot. I assure you I am not a fifteen year old girl from the 1980’s. A lot of this process is awesome, from the people who have been so kind as to share our story to the generous donations to the amazing acts of people who want to help. The actions of family, friends and strangers alike does stagger me. Not a soul has been obligated to help and yet so many have and continue to do so. 

It is to all of you that I am incredibly grateful. Thank you, for caring about one little boy and his special needs enough to help unite him with a companion to give him such an improved quality of life. His life isn’t by any means bad now, but this companion will open up so much more to him while increasing his safety. 

Mama Rambles about Worrying

We all have our days.

Last night, as I lay in bed, all of the “what ifs” surrounding J’s tonsillectomy hit me like a ton of bricks. There were questions from the autism perspective, questions from the little kid perspective, and questions from the “I have an anxiety disorder and trust issues and this is freaking me the heck out” perspective. 

Then this morning I had a bad blood draw at the very hospital he will be cared for at* and all hell broke loose in my brain.

It is hard to trust strangers with the care of my child. I have been forced to learn how to, thanks to Early Intervention and all his various therapies and I am grateful that I have been this early. I cannot imagine facing kindergarten in a few years without this background. They have shown me that many professionals are just that, professionals, and that some of them can in fact care about my son almost as much if not exactly as much as I do.

How do I trust people who are going to put him under anesthesia though? Who are going to do something that will cause him pain? How do I soothe the pain of a child who cannot articulate anything of that nature to me in an effective manner? How do I convince him after surgery that it is “safe” to drink his milk, that it’ll be okay to try it even though it hurts? How do I make him not panic about his IVs, and how do I help him wake up without being terrified to find himself in such a strange circumstance?

How do I let my son go into the operating room without me. I cannot hold his hand in there, my only comfort through so much of what we’ve gone through, and selfishly it’s killing me inside. I have a strong sense of faith and know he has at least 3 beautiful guardian angels to look over him through this but I am scared. I am scared witless. 

And I only have a scant couple of weeks to cope with this fear.

I have to figure out how to be strong enough not to break down entirely on him that day, fighting my PTSD enhanced instincts to protect him and frankly run as fast as fast can be from that hospital that day. I have to figure out how to cope with the fact that his doctor, while a great man and great doctor, scares the wits out of me through no fault of his own. His height, build and manner of being sets me on edge immediately and that helps no one. 

I have to make a plan to keep Miss Kitty close to me and to be right there the second he gets out so I can be right there holding his little hand as he awakens. He needs to be able to see me and Miss Kitty and everything he loves so I pray he doesn’t panic.

Anyone know how to make surgical scrubs for a fat stuffed cat?

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*The bad blood draw wasn’t the tech or hospital’s fault. It was a convergence of bad luck between fasting too long, being dehydrated and having my anxiety set off by my request to be stuck in the arm rather than in the hand being thrown out the window due to bad veins. Was what it was. This hospital has given myself and my son exemplary care.

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