learning to navigate the world, j-bear style

Tag: frustration


Something I said today to J’s speech therapist was “It’s amazing how people can manage to be ungrateful for what they have”.

I suppose we are all guilty of this. No, wait. I am willing to bet a princely sum that at times, we’ve definitely all had moments of this.

It was just a casual conversation I was overhearing while waiting for J’s appointment to start, a parent of a child J’s age being displeased that her son “talked like a baby” and constantly demanding he “stop using a baby voice”. Here I was, witnessing this, and from my side of the room all I saw were two boys of similar age, hers and my own, playing and being silly as small children do yet one was being told to speak more maturely.

Now, granted, apparently this little boy “can talk like a 20-year-old” but whatever. At that moment, he was being his age.

It hurt me, right in the heart. I wanted to take J away and hide forever from people like that. I wish I could have sheltered that little boy too. It’s cute and all when small children speak like little adults, don’t mistake me, but being demanded to do so is tough. It was the attitude being displayed that hurt the most though. It rang to me like me being smug about my son running while another mother sitting across from me wished, day and night, for her child to walk.

Yes, I know J talks. I understand him better than most anyone else, after all. But that’s the thing. His words are hit or miss. If you are not in one of his favored places… There’s a very low chance you’re going to hear much. It’s just how it is. He is always encouraged, always praised, always given incentive but he’s not there yet and that is okay. He will always be encouraged and supported in terms of communication, however his preferred method of communication shakes out, but damn.

It was like a bucket of cold water to my face, having all the things I fear for my son sitting right in front of me: the judgemental people, the ignorant people, all of it, right there being sharp with their own child.

What a day.

Despite this, and after two days of pretty remarkable meltdowns, I took J to Cracker Barrel tonight after he said “pancake” when asked what he wanted for dinner. And he ate three bites of pancake, one with syrup. I know a lot of people won’t get the reason that’s a big deal, but it is. This child does not try food lightly yet he took actual bites of pancake (he’s had it before once at school) and willingly dipped it in maple syrup, then ate that too! He drank his milk, he sat in his chair, and he behaved wonderfully. Every time the waitress came over he pointed at her tray, then waited expectantly. He thought every time she came by she had more mysterious stuff for him! Ha!

So, a success to end this post on.

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.

Worn Down

There are days where all I feel is an immeasurable amount of burnout.

We do therapy 5 days a week. Our average week right now is like this, with 2 days of speech therapy to begin soon:

Monday: Early Intervention (Developmental Specialist) – 1 hour

Tuesday: Occupational Therapy – 1 hours, ABA therapy – 2 hours

Wednesday: ABA therapy – 2 hours

Thursday: Playgroup/Parent Group – 2 hours (ABA during this), Occupational Therapy – 1 hour

Friday: ABA therapy – 2 hours

Except for Tuesday’s OT and Thursday’s group, these all occur in the home.

I feel guilty having negative feelings about this because I know there are families out there fighting tooth and nail for ANY services, yet here my son is blessed by abundance. What he needs is found for him, but there is a price for that.

When he’s not in therapy, I have to do life stuff. The apartment always looks moments away from being condemned. The last time I looked like a respectable adult was I do not even know when. I drown myself in research and paperwork, constantly signing up to learn more and more and more because every ounce of knowledge could be that one tool in the tool box that helps break J wide open or at least gives him enough relief from his struggles to focus on being present and playful.

My dedication has been both praised and mocked. I am not a martyr. I am doing nothing more than any other loving parent would do, I believe. This does not mean I deserve to feel so lost and so unsupported.

So I do what any other normal human would do and pour my heart out to the anonymous internet. That’s sane, right?

I lay my soul bare on this matter because I know I simply cannot be alone. There’s likely at least one other primary caregiver – mom, dad, grandma, grandpa, auntie, uncle, foster parent, whoever – who is feeling the same way and is as scared as I was (and am!) to put a voice to the darkest feelings in their heart.

I love my son. He is why I do everything I do. He deserves all that I did not have: someone to fight for him, to seek all hat he needs in this world and to be there by his side no matter what. He challenges and frustrates me and there’s some days it is ever so tempting to stick him in a box and mail him away to the first person who’d take him but in the end, he is so very much my world.

I just wish I could have, you know, a day off once in a blue moon. Maybe even just once every other month.

This job, alas, did not come with that sort of benefits package.

Edited to add: J’s fever broke late Friday night or early Saturday. He’s still got a yucky cough but is doing much, MUCH better. Thank heavens.

Hitting the Random Button

Yesterday, we had OT and ABA. ABA was cancelled due to his therapist feeling ill (feel better N!) and I got all excited. We could go visit IKEA which is one of our favorite places! Only that didn’t work out.

I battled with his primary care doc’s office over insurance shenanigans.

Now, a little background is in order. I myself live with complex PTSD. One of the things that really triggers my symptoms is being treated like I have not done something I have very, very clearly done. I start to panic, it’s a rotten mess. I know this about myself, thus I do my best to document everything for situations such as that. I keep track of phone call times, text messages, emails, visits… I have a pen and paper calendar (who DOES that anymore?! Oh yeah me) and it comes with me nearly everywhere we go.

So yesterday the battle begins. J-bear’s OT office calls. The fantastic office admin sounds so sheepish when I answer the phone. Insurance has failed. Again. The referral she was given was wrong in multiple ways. She can’t get a call back from the office and isn’t even sure what to do. I apologize to her profusely, as we’ve fought this battle since November together, and when I am finished with her I am immediately on the phone to his primary care doctor’s office.

Now, every single person there that I have talked to told me I was wrong. Not only was I incorrect about what the OT’s office was telling me, I had never requested the 2012 referrals and it was my fault they’d had the wrong information. My nervous nature had prodded me to write out a document with all of my son’s pertinent details, every detail of his providers requiring referral as well as dates those referrals were needed for. I delivered this document 3 times. THREE. I informed the women I spoke with of this. They told me I was wrong (!!!) and that I’d have to fight with insurance to get this all covered but they’d see what they could do.

How kind.

30 minutes later… After I’ve already learned that wrong names and medical records numbers have been kicked around, I get a call back. They were so hangdog about it. They found their obvious errors. Everything was being immediately fixed. Never an apology, but I’ll forgo that if his care can continue unimpeded by their idiocy.

… Meanwhile she called my son the wrong name every time she mentioned him.

This brings me to another topic on the random generator: My son’s name.

I saddled this kid with 3 first names in the course of his full and complete legal name. Yeah, I know, signs he’s either going to play baseball or be a serial killer right? All of these three names are common first names. He routinely gets called his last name as his first name. It’s mildly annoying. Having his already short first name shortened further… mildly annoying.

The teacher who called him “Kyle”… completely unrelated to his actual given names…. that was something special I still can’t get over.

Whenever something naughty happens he might try to ever blame on someone else I am going to blame it on Kyle, my invisible son that must surely follow J-bear around!

And last on this weird journey of an entry, I found a balance disc for J-bear, one of them inflatable things you use for workouts. He loves to stand on people to try and balance and honestly, it hurts to have 32lbs+ of toddler balancing on your legs or back! He is loving the disc and sits or stands on it, plus it was fairly inexpensive at Wal-mart. I’ll try and get a picture of him surfing on it this week. Right now he’s too busy trying to be a bat by hanging off the couch and I am going to go rectify that.

We have rafters to hang upside down from after all.


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