learning to navigate the world, j-bear style

Tag: emotions

The Precious Dog

There are some to whom I may seem obsessed when it comes to J’s service dog.

I can’t see it as obsessed, for I place the same level of importance on any and all accessible tools and therapies I can find for him. I see it as doing what’s right for someone I love who needs a voice.

Does this make me a bad person? Too singularly focused? Too narrow in the direction I am driving? Maybe.

Can I feel badly about it? Not completely. Not even halfway, I think.

I have one son. One dear, small half-me person who relies on me for everything. If I had other children, the same determined dogged pursuit of all things they need and some things they want would extend to them as well. Right now, though, and likely forever I just have J. He is my world.

Yes, the dog is very precious for us. He or she embodies safety, security, companionship, assistance… This dog will open up doors to my son that I alone cannot. I can give him therapists. I can give him great schooling. I can implement his therapy at home but there is always a slight piece missing and this dog can fill those holes. He or she will be a challenge in and of themselves, for they are a dog. A living, breathing, decision-making being who will also rely on me for care and structure.

I embrace that.

The work, the devotion of the time to both boy and dog that is to come, it will be a small price to pay for my son’s world being allowed to open wider. It feels an utter pittance in comparison to knowing that if, God above forbid it, my son got away from me that he could stand a significantly higher chance of being brought back safely home.

So I will continue to pursue our fundraising. I will continue to beat the drum seeking support for his and 4 Paws cause. I won’t relent, cause this is bigger than “just a dog”. This is my son’s life, growth and care we’re talking about and there’s nothing too good for any of that.

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.

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.

To be or not to be (verbal)…

Today after an outting, I was left thinking on something I have considered often before.

My son is considered non-verbal. He has some words, and he’s growing in his use of them, but they are sporadic and a lot of his language is echolalic meaning he echoes without much meaning if any at all. He is only a nearly three year old guy though, so people often write him off as being a shy child. It’s not a big deal in public… yet. That’s another tale for another day.

Non-verbal does not mean he is not expressive, which is what led me to writing here today. The range of emotions that plays across my child’s face in the course of a day can overwhelm, astound and amaze me all in turn. He will never successfully play poker, for one thing. He has a face like glass, every thought laid out plain as day before the eyes of those lucky enough to watch. Joy, sorrow, fear, frustration, anger, pain, mishief… His sweet face is so dynamic that I can find myself forgetting we’ve managed to have a ‘conversation’ without a word, or that he’s entertained our whole table (and then some) at a meal without ever uttering a syllable.

It’s a definite art. A smile here, a side of the eye glance there, a furrow of a brow or a wrinkle of the nose… This child starts games with familiar adults without saying a thing. He simply shows them what he means and what he wants with simple, clear determination.

I am a biased spectator though. Every day, I am my son’s translator, his advocate, his voice, his comfort person, his waitress, his short order cook, his maid… his mom. I read him like a book as we’ve been at each other’s sides near every hour of ever day of his short life. I am not always right, as reading another person is a wildly imperfect art, but I have confidence that most of the time I do get it right.

Unless he is sick. When he’s sick I curse his inability to articulate needs and problems with such a violence it’s indecent.

I guess the point of this is that I am coming to appreciate how he communicates now, knowing it will change as he learns and grows. I pray of course that he will grow more verbal over time but I am aware that might not be the case for him and am leaving myself wide open to whatever method of communication comes to be for us. If smoke signals and Morse code are all that might ever work for us, I’ll stock up on lighters, tinder and items that are easy to tap together ASAP for it will just be nice to have a conversation with my boy.

He is a good boy, a loving boy, a funny boy, a gentle boy, a rowdy boy but right now he is a quiet boy too, and that’s okay. He’s the only J-bear I know and I love him for who and what he is, no more and no less.

The Most Evaluated 2y9m old on the PLANET.

Seriously, can J-bear get a cape? A theme song? SOMETHING for going through evaluations by the millions?

Let’s break it down:

Since January, he’s had the following:

– ABA evaluation (checks progress of therapy, develops new goals)

– Developmental Evaluation (the complete BIG evaluation determining all his diagnoses)

– Early Intervention evaluation (okay this is Monday but still)

– Speech Therapy Evaluation 

And then between now and June, the schools propose THREE more.

… Are you people kidding me.

I understand the need for a lot of these. I am grateful that the ABA, Speech and EI evaluations are all completed by people who are familiar to him, so they feel like a session filled with play as well as work. He has only had 1 evaluation this year that was truly hard for him and he made it through. 

Every time I go through one of these it is an emotional wringer. First, I watch him work his way through the obstacles placed before him so that his skills may be studied and considered. Then, I watch people deliberate over what the data they collected tells them. Finally, I get emotionally knocked around by hearing “deficient” in this, “behind” in that, so on and so forth.

I propose that all people involved in these evaluations on children place a category within their reports that outlines what the child is AWESOME at. Seriously. We parents and caregivers might very much need that, and as the child gets older, they might need it too! They deserve to see/hear the ways in which they are exceptional. I know my son is delayed and struggling significantly in some areas. It made my day today to have the woman doing his speech evaluation share a great deal of positivity with me about what she sees in Jacob and how she feels about where we can go from here.

We need positivity amongs facing all the challenges. I needed today to hear someone say that he truly is a bright, sweet boy – to know that others can in fact see what I know is so very much him. 

Still waiting to hear when we might be headed for a sleep study for him. Good times! 

The Roller Coaster

Much of the time, I am doing all I can to be optimistic to the point of obnoxious about J’s situation. We can do this! Keep moving forward! Research, research, research! Schedule therapies! Onward and upward!

Then there’s the days where logic brain takes a trip on the failboat and I am left with emotional brain, all raw feelings and little control over any of them.

Emotional brain and I do not get along too well. It tends to cause me a lot of grief because it spends a lot of time drowning in the depths of sorrow, anxiety and outright fear. It’s not even a nice place to visit, never mind spending any appreciable time there.

Today is an emotional brain kind of day.

Logic brain knows that in the grand scheme, we are so very blessed. Therapies are readily available. Insurance is at hand to cover all that he might need, even if it comes with a little battle. Progress is being made, even if the movement forward feels miniscule some days. We are fed, we are clothed, we have our physical health largely intact and we also even have the ability to meet wants now and then. Things could be so very much worse than where they are for us today. I am grateful for my blessings.

Emotional brain forgets this. It sees a little boy J-bear’s age come into the OT waiting room and answer the person preparing to do their evaluation in clear, articulate sentences that make him sound like a grown person compared to J and drags me down into a well of unending tears. It is raw, cutting and biting. It is a pain you can’t easily escape. You see something that is not as it should be with your child and with every fiber of your being you want the magic band-aid that will make it go away and have all things be as they ought be. You want him to be that boy, forgetting the logical right of things that would quickly point out doing so would deprive you of the child you know and love so well.

You want to pull the covers over your head and make all the hurting stop. You want to wake up tomorrow and have everything be normal.

And that’s emotional brain. It’s a very powerful thing, but it is not always the right thing. It is good to acknowledge it, it is good to let it vent so it doesn’t explode on you (as mine tends to do, usually in the form of random crying fits)… it is good to realize you are not alone. There are millions of moms, dads, brothers, sisters, stepmothers, stepfathers, grandparents, aunts, uncles, cousins, friends, teachers, therapists… There are millions of people who fight similar demons. It’s so hard to remember but it is okay to feel everything you need to feel yet to not be so possessed by it you are too paralyzed to act.

Today though, today is all about emotional brain. It is about feeling every inch of the hurt, pain, fear and sorrow. I will examine it, wallow in it, let it be all I see for just today. I will cry, rage, do everything I need to do to feel better and work through all of this mess of emotions that dealing with everything brings up.

Tomorrow, I will be okay. If I am not okay, I will be okay enough to make myself seem okay until I am very much okay again.

I was interrupted in the writing of this post by J-bear bringing his weighted blanket over and throwing it on my lap, a sure sign I better wrap him up in it and give him a good squish or else my laptop would be forfeit. He’s not going to allow me my pity party long, that one.


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