J-Bear and Me

learning to navigate the world, j-bear style

Month: August 2013 (page 1 of 3)

Preschool and Mama’s Trust Issues

It’s an ungodly hour of night and here I am sitting at my blog. Smart, right? Especially given that his royal J-ness is usually up with the sun.

It happens. It’s no big deal.

It is less than a week now until the first day of regular preschool and the nerves have yet to truly set in. Honestly, I think I am in denial. Yes, he did go to summer school this summer. It felt a lot like camp. It was brief, it was a lot of fun to him it seemed, it was over before we knew it and now here we are. School, proper school with all the other kids, seems so… formal. Serious. Real.

He and I did games and painting today, spending a lot of our time playing and practicing words and generally puttering around as we do on days we (well, I) don’t feel like leaving the house. We tried dot painting on the easel and when that turned into a major excursion on the fail boat we changed to traditional painting. He made circles and smudged colors and generally made a mess.

It doesn’t matter though. He was happy. That was the goal.

Now, our days of doing these things will decrease dramatically. Sure, we can do our usual silly stuff on weekends or during afternoons but things are going to change, and change starkly. I know he is ready, even if he doesn’t quite know it yet, but am I?

He’s my baby, my one and only. My precious little guy who I have held the hand of through every little thing. I can guide him and support him on his journey through school but I cannot go through each day with him as I have through all else in his life thus far. I think that’s where I am hanging up. Strangers, who I hope will become partners with me in fostering the growth of J, will have charge of his days. I have to trust them with his care.

That’s the hang up. Thanks, blog slash psychologist!

Trust… It is something I do not do easily if I do it at all. Now, he who is most precious to me on this earth will be entrusted to people who are strangers to me. I have met one of them at least, and I feel she could be good for J, plus I know the therapists to be reasonably competent but none of that is trust. How do I know they are going to understand him? How do I know his needs are going to be met? How can I be sure that his determinedly independent way of being coupled with his general good nature is not going to leave him overlooked because he’s simply not always as demandingly loud as other children can be?

I am scared of him feeling hurt, frightened, lonely, overwhelmed, neglected… Any of these things.

I am also scared of shadows that don’t always exist. My brain is dark and full of terrors, much like the night George R. R. Martin describes in his “Song of Ice and Fire” books.

A part of me knows he will be alright. It’s just hard to let that part of me overrule the hyperventilating, worried for my boy, the sky is falling part of me all the time.

Hopefully he lets me take pictures next week. I didn’t remember to/get to do that during the summer session and look forward to trying when he goes to his first day.

Alright, shutting up and going to bed. Thanks, blog. You’re better than a therapist sometimes. Also, in that vein, does this count as talking to myself and, if so, am I just proving myself increasingly crazy? Only time will tell, internet. Only time will tell.

Scripts

Yesterday, I prattled about J’s favorite stims.

Today, it’s all about how he scripts.

What’s scripting? He will say the same words/phrases again and again like they were lines in a play. Occasionally, those around him have lines within these scripts. It is absolutely important that you say these lines or he will hang up then and there and not relent until you do. Failure to comply could in fact end in a meltdown.

You’d think I am joking yet I’m not.

J’s first script is one he still has. It’s simple. He says “hi” and you must say hi or some variant thereof in return. He was doing this last summer, right around when he was diagnosed. It cropped up whenever he seemed to be insecure or unsure. You would get a panicky sounding “hi?” several times in a row and he would only escalate until you calmly returned his hello.

And yes, scripts and all, he’s still considered non-verbal. Why? The words aren’t carrying the traditional meaning. He’s saying them within the script, yes, but he’s doing it for specific different responses. He uses them for comfort as he does his visual stims. Scripts are also entertaining along with that comfort. He finds himself quite  hilarious and I do tend to agree with his assessment.

Most of his scripts run to the “minion” side of his language usage. I have no idea precisely what he’s saying. I know it’s a script because it’s the same sounds with the same cadence in the same order again and again but it can take me months to figure them out if I ever figure them out at all. There was one he had that I only figured out because he got a toy phone from his Catherine and started doing all of the gestures that go with it. Turned out it was a phone conversation from the movie “Megamind”. Right now, he’s got a few scripts from “Bubble Guppies” and “Ni Hao, Kai-lan!” going on along with mundane things like everyday conversations.

My house is rarely quiet and when it is, I know to immediately check on him. It’s quiet right now because as I type this he’s sitting on the arm of my recliner beside me having a conversation with his foot as a telephone.

I wouldn’t have him any other way.

Stims

So this is part of our day-to-day, random events like the one pictured here. There I was in the kitchen setting up one of the three of these wire shelves I’d gotten to help organize the counter. I heard a rustling in the box in the living room and decided I ought to check on the 38lbs mole living in my house. Sure enough, he’d opened the box back up, pulled out all the packing and was on the couch doing this:

stim

It is common for people to associate autism with hand flapping and some wild physical movement. If you don’t live it every day why would you know that stimming, short for self stimulation, can come in many different ways? J’s main way to stim is to do so visually. This wire rack is an absolute goldmine of visual stimming for him. He’s been at it for 20 minutes now and I haven’t the heart to take the rack away. It will disappear after he goes to bed tonight only to return when it is employed in its proper place in the kitchen.

Now, imagine this on a larger scale. Shopping carts. Fences of nearly any material. Large wire display crates in stores… The list goes on and on, all of them so distracting and tantalizing to J that he can land himself very, very easily in a lot of trouble. He has gotten hit with shopping carts a few times, all of them lightly thankfully. He has gotten wedged between a metal fence and a building at the Stone Zoo, where I thankfully was able to coax him out before it got even more embarrassing. He’s walked into traffic all in the name of the stim.

I know that stimming is comfort and peace for J. I do not reprimand him for doing it nor do I demand he stop doing it the moment he starts. Catherine, his first ABA provider, saw through to the core of why he does it and taught us well in how to handle it. He can have his time to engage in it and bring himself back to center with it. Once he’s had his time it’s so much easier to ease him away from doing it and refocus him on other activities… unless you’re placing him in chaos. Places that are busy but where you need to go to conduct everyday life business, those are chaos. Those are the places we get in trouble.

J’s dog, when we ever get there, will be trained to help us so much with this. He or she can disrupt him, bodily keeping him from putting himself in harms way either via tethering while I am in control of him or her or by redirecting J’s attention away from the desire to stim and to minding him or her instead. It seems small and silly to some, perhaps, but it is my son’s health and safety. There’s nothing more important to me in the world with that.

And that’s part of our life, summed up in one picture and a whole bunch of words.

Adrift

Kind of adrift, mentally. There’s always things I should be working on. I am getting little things done but major things seem to require more energy than I possess. It’s a mental state thing. Gotta power through.

Little boy is doing alright without the cast. He spent much of yesterday holding his arm in the same position the cast had held it. Today he was more loose with it and used his left hand a lot more, which is good. I am eager to get him writing/coloring again to see if he was truly as left hand dominant as he seemed pre-cast or if he has turned right hand dominant. He has tended to be pretty ambidextrous so far so he could just end up being that way again for a while.

I’m feeling defeated in a lot of ways. I feel like fundraising is turning out like so many other things have in my life: I pour in my heart and soul but, the moment I did that, life threw everything into chaos and made success seemingly impossible. It hurts twice as hard in this case because I am used to losing things/missing out on things but I am not as easily able to handle my son being in that position. I know a lot of this is just my bleak mental place of the now but I have to wonder how much is just harsh reality. I feel like we’re never going to succeed with raising this money and if we do, we’ll never succeed with raising the money to get to Ohio to train and bring home the dog.

I am Sister Suzy Sunshine, aren’t I? My stars.

J starts pre-school next week. I think him starting school will help me in a lot of ways. I’m nauseated thinking about him spending a full day there yet I know that while he’s there, he’ll be getting so much of what he needs and I’ll be allowed to work on a lot of sorely needed things around here. I can clean, plan for the yard sale, contact people more freely, even enjoy a shower without complete fear of what he’s doing while I’m not looking. I can take care of grocery shopping, laundry, all kinds of things that just seem absolutely crushing to sort out the logistics of when it’s the Me and J 24/7 show.

That brings guilt, of course. Am I a terrible parent for being eager for the time apart? I’d like to think I’m just being human and, I know after a short while of it I am going to miss him. I’m already missing the freedom to plan outings for any old day and time, that much I know. September and March are the best months to try to get in to see the museums and such in Boston and now that option is off the table, but we’ll be fine. We’ll figure times to go out and we’ll be alright.

I should wrap this up before I become anymore mopey! Maybe I should put up a feedback form so people can drop subjects/writing prompts into it and kick myself into writing more. Maybe I should just go eat a cookie. Like my surgeon, who I see tomorrow, would be thrilled with that. Hopefully tomorrow she gets to tell me all my axe wounds are fine and I can be left alone til someone has to axe wound me again someday.

Bye Bye, Cast

So it’s gone.

Today, at 9am EDT, we bid a not so fond farewell to J’s purple cast.

There was a lot of screaming and fighting involved. The poor kid, this appointment was the stuff of all of his nightmares. Let’s list them:

  • Flourescent lights? Check.
  • Strangers talking loudly to him? Check.
  • Being laid flat on his back staring at the aforementioned lights? Check.
  • A machine that combines the sounds of a vacuum cleaner and a chainsaw? Check.
  • Being pinned in place while that’s being used? Check and double-check.

This was a recipe for fail, and fail it was.

Now, I cannot fault the tech and nurse that removed the cast. They were doing their job and, to their credit, they spoke to J directly and with great empathy despite the fact he clearly was not following what they were saying or following their instructions without my moving/directing him. The moment he got on the table panic set in and it was a fight from beginning to end.

Cast removal? Not for the faint of heart. However, they got the silly thing off and besides being a little grimy and rough his arm looks great. He’s had it scrubbed twice now and I’ve massaged it with Dream Cream so his skin is returning to softness. He braved two quick x-rays and finally I could see where the break was when the PA showed it to me. He healed beautifully and, barring any continued favoring of the arm beyond the next couple of weeks, he’s back to standard J-bear hijinks.

He was so upset through so much of that process that I was worried he’d throw up. Thankfully he began to calm as we were leaving and was quieter as we marched down the stairs to leave. Once we had some treats at home (J-bear still does run on Dunkin’) and relaxed I laid him down for a nap…

That lasted til 3:30pm. Which I took with him.

Man did we need that.

He’s super relaxed right now and bedtime should, I hope, be soon. We’ll see how things turn out.

And pray he doesn’t ever need a cast again.

Stupid Depression

Another off topic one. I’m starting to wonder if I should just stop calling them that and figure if it happens anywhere on the planet, to anyone, it’s free game to be an on topic matter for the blog.

Anyway.

Depression is a bitter, rotten, awful and frustrating part of my life. It’s not major depression. Despite what some people in my life have believed, I am not even close to unhappy all of the time. I hit these funks, usually surrounding an episode with my PTSD, and they’re just dehabilitating. They feel mentally how my body felt physically post surgery.

It’s like one day you’re moving along, everything going as things go, nothing too bad or too great but everything seeming calm and peaceful. Then, in the blink of an eye, something happens that you may or may not be able to notice and boom, there’s this massive weight pinning you down. You can’t escape it, you’re bone tired all of the time, your experiences feel muted and dull… Everything seems sad and lonely and heartbreaking despite the fact most of it is likely anything but.

I hate it. I hate every minute of it.

But it’s not something one can flip a switch on. That has to be the single most frustrating thing, having people be like “cheer up” or “be more positive”… I can glue on all the smiles in the world and lie through my teeth feigning a perky demeanor all I want, it’s not changing what’s going on in my brain. It does, in fact, make it worse. It makes me feel even more broken, having to lie to the world and make everyone else see a falsehood as truth so they don’t get their feathers ruffled.

This sucks, but this is part of being me. This is part of who I am. It’s hard wired into my brain much like some pretty wild things are hard wired into my son. I can’t conveniently edit it out or hide it away because the rest of the world around me might feel awkward about it, I have to just live with it and ride it out when it happens. Sometimes, it’s a few days. Sometimes, it’s longer. Sometimes, it’s barely any time at all. Just as there can be little warning for when it will occur there can be just as little warning for when the weight lifts and the elusive sense of “normal” returns.

Meanwhile, life must and does still go on. Tomorrow, I take J to get his cast removed hopefully. Next week, he begins his first school year. The 14th of September is our Charity Yard Sale. There’s a lot going on and whether or not my body and mind can keep up I have to keep trucking onwards. It’s just a lot harder some days than it is others.

—————–

Just a note to those who read and who know me out in the real world: I am okay, I promise. As Shrek says, stuff is “better out than in” sometimes and this blog is my cheap therapy. I am always touched by the care and concern you show me but never want  you to worry. 🙂

As Simple As A Cat

Hunker down, I’m about to tell a story. By now all should know I am physically incapable of being short-winded on the internets.

About a year ago we were coming up on J’s first neurologist appointment. This was going to be the turning point in J’s care. This would be when he was given an initial diagnosis of autism. It was his Early Intervention coordinator along with his EI Occupational Therapist and his group leader who all saw the signs. They saw the struggles I saw and knew what they meant. These women were amazing to us, guiding us along the start of what will be a lifelong journey.

One appointment I was chatting with his coordinator about his attachment to his pacifier. A particularly horrible doctor in J’s primary care doc’s practice had been vile to me about it. Now, children tend to have self soothing things. Some have pacifiers, some have their thumbs, some have who knows what. J at this point had zero attachments to any item or ritual outside that pacifier. Two years of age is starting to get long in the tooth to keep using one but, it was his ‘thing’ and still is his thing. He accepted no other comfort, so in our discussions we noted that factor and left the pacifier alone with the thought that maybe seeing if he’d grow attached to a lovey would help him wean off it.

Now, J has roughly half a million stuffed animals. That’s what it feels like anyway. They’re everywhere in our house. There’s a mountain of them in the living room and another in his bedroom and a small heap where he sleeps… We have stuffed animals covered. Take your pick, we likely have it. I was only in my first trimester when I bought him his first stuffies, three beautiful JellyCat critters, and the collection just exploded from there. He liked some of them, for they were soft and some had been by his side since birth, but he wasn’t truly attached to them. I was of the mind that he never would get attached to them.

Then he found her, the stuffie of his dreams.

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Image by Family Tree Photography

Miss Kitty came to us as a gift. She represented a fluffy member of the family who departed this world not too long ago, a fat black and white cat named Diesel. Despite the masculine name she was indeed a female cat and she purred like a poorly tuned up Mack truck. She had a mean streak if she didn’t like you but was tolerant and even hilarious if she did. In her old age she somehow always managed to be gentle and tolerant of J who did not understand that she was going blind and deaf. She allowed his pats and attention and generally made him giddy every time they met. One day J just took up with the fat stuffed animal that looked so like her and I’ll tell you… He hasn’t looked back.

This cat has been puked on, peed on, thrown in multiple water tables, dropped in puddles, traipsed across state lines, dragged through surgery, thrown through the washing machine many times… This cat has gone everywhere she possibly could with J. I even sought out duplicates from the same company but every time J rejects them as Inferior Cats! Miss Kitty and only Miss Kitty will do.

Now, sometimes, J will accept his little beanie Kai-Lan doll or one of his stuffed sheep, or his stuffed dog, or his monkey… but it’s always Miss Kitty he comes back to and Miss Kitty he truly misses when she is gone. She has sat on Santa’s lap with him while he screamed (Santa’s scary) and comes with us nigh everywhere like my errant other child that needs watching.

To finish this post, I’ll leave you with some pictures of Miss Kitty making Poor Life Choices:

kittypoorlifechoice1

Miss Kitty and the Mardi Gras Beads

kittypoorlifechoices2

No, I still don’t know what happened here.

Yeah: The Revenge And Other Stuff

I wrote about J answering with a direct “yeah” reply to a question not too long ago. It has since become his go to answer when he wants you to react positively.

It’s actually kind of hilarious. It’s an effort to not encourage it, though on occasion he has been very definite about saying no. It’s usually to food. Like, healthy stuff. Because of course we would never eat that.

Today while he was at occupational therapy his therapist asked him if he’d like to go home with her. Of course he said “yeah”. You’d think this was a joke and him just parroting because he feels that’s what expected by I have to wonder. After the session, which was his last water/swim session for the summer, he kept cozying up to her and offering his cheek like he does to loved ones for hugs and kisses.

The wicked little flirt!

This kid cracks me up a lot but lately, we’re  making each other crazy. This was what it was like before he had summer session at school. We were with each other 24/7 and it made us both a little nuts sometimes. When he’s feeling frustrated with it he gets more clingy. When I am feeling frustrated with it I want to be on another continent away from all people. It’s not a good mix.

We’re getting by though. We did an indoor water park yesterday. For those curious, CoCo Key in Danvers, MA, is not worth the cost of admission. While it has a great little kid area and the lifeguard staff is top-notch there’s much to be desired elsewhere. The little concession grill area looked like an afterthought, some of the pool areas seemed old/neglected, the bathrooms made me feel like I was going to walk out with several kinds of rare and interesting fungal infections and it wasn’t a very user-friendly place for families with small children to use for changing, etc. I think for what I spent, we kind of got our money’s worth. J had a blast but he’s thrilled with water to begin with… He’s an easy audience. I think if I am going to spend the money on a water park again it’ll be for Canobie Lake, Six Flags or Water Country. Maybe next summer?

J’s cast comes off on Monday. Meanwhile, Murphy dog has his own purple cast! Yes, the unstoppable Murphy is fighting back against infections. His drains are removed and he’s moving about! His worse of the two injured legs is in the cast for now but the fact that he is healing and showing more of his old self is so, so, so heartening after being scared for him those first days. Still praying for his full and complete recovery but at least right now he’s trekking dutifully forward, as is his beloved person.

So this is our life. School starts 9/4, yard sale 9/14 and I am noodling getting a raffle together. If my friends at the Red Sox ever see this… Please consider helping us out! I’m sending you a press release and letter begging! Show us some love, guys!

Yeah I’m both pathetic and shameless sometimes. I’m semi okay with that.

My Boy! Warning: Picture heavy!

One thing that grieves me is how hard it is for me to capture my silly boy in a picture. I do take a lot of goofy photos of him but I rarely get that elusive connection between boy and camera. It’s hard to explain. Last year, I tried taking J to a studio for pictures just before we started to learn about the possibility of autism. It was an epic fail all around. He hated it, I hated it, it was just a mess.

And then, this year, we met Laura.

Laura owns her own business, Family Tree Photography. She also “gets it”. She has an intimate understanding of how to work with children with special needs and not only treats them beautifully but helps show the world their amazing personalities. I met Laura through 4 Paws for Ability and count myself very blessed to have found her!

A few weeks ago she had an opening for a mini-session in Sandwich, MA. I jumped on the opportunity and it was one of the best things I could have done for both myself and J. I am getting all misty just writing this! Without further adieu, here’s J-bear in all his awesomeness!

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J and Miss Kitty. Miss Kitty deserves her own post!

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So Tired

I am soooo tired. I could nap all day, then maybe eat something, then sleep all night.

Part of the problem is quality of sleep. You see, I sleep with J-bear. He won’t go to sleep without a human to hug him. It’s frustrating, it’s likely a reason to ridicule me for some but if the household is going to sleep J has to sleep with me.

Only lately, I’ve not been sleeping.

The cast is the likely issue here. He moves and shakes like there’s no tomorrow when he sleeps. He’s all over the bed, to the point of trying to pitch himself out of the bed and once succeeding at that. It’s hard to get comfortable, I get that, but try being the other body in a bed that seems increasingly too small for his antics. I feel like I am settling in for war every night!

I sleep on this sliver of the bed  hoping he doesn’t kick me out. It’s obnoxious but it’s all I’ve got right now.

School starts in two weeks and I am hoping that, what with the cast coming off and routines changing, that he can be transitioned into his own sorely unused bed. His room looks like a crazy storage closet due to the fact it’s never used for him. His clothes just happened to be stored there. I really want to see that changed and get him using it again and get it ready for his eventual dog to come live there too.

It would also be nice to sleep again.

Oh how big I dream.

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