J-Bear and Me

learning to navigate the world, j-bear style

Tag: sorrow (page 1 of 2)

The Kid I Don’t Have

I cannot mourn for the child I do not have.

Strange statement, right?

I do not have the preschooler  you see on television, all sassy and chatty. I do not have the child who listens to directions or warnings easily. I do not have the child who does things in a mainstream, socially expected way.

There is a place in the heart of parents like myself that I know mourns the child they do not have; the child that some of them envisioned and the child they see in their child’s peers on a day in and day out basis. You have these gut wrenching moments of “If only…” or “I wish…” and it can steer you down this slippery slope of self blame, sorrow and heartache. It’s an ugly, dark and dismal place to be.

I can’t live there.

The son I have is amazing. Yes, other children my son’s age, their parents celebrated their child saying phrases long ago. That doesn’t matter. I celebrated it yesterday and it was glorious. Did you know he plays games now? That he can sing “Head, Shoulders, Knees and Toes”? Did you know he can create little scenes with his toys and just crack you up with the way his mind works, because now he can let you see that? Do you know that he loves to give kisses now, rushing over sometimes out of the clear sunny blue to press a smacking kiss on my cheek?

There is so much yet to be done ahead of us, so many things to learn and to cope with and to work either with or around. Every day though, I look at the son I have and cannot help but to think “wow, I got a good one”… Even when he melts down so badly it takes days to fully recover. Even when the house is destroyed beyond recognition with toys and stuff all over. Even when all he can do is flail his arms at me, scratching and hitting out of sheer frustration in his attempts to tell me something. He is my son, my best boy and changing even the smallest thing would take away what makes him ever so uniquely him.

So I can’t and won’t mourn for the child I do not have. I will celebrate the rough and tumble shining star of a little boy I do. Every day, I’ll hope that the rest of the world can come to appreciate him too, learning to love him just exactly as he is. No more and no less.

Mourning a Friend

Hey. Hey all of you three people who read this blog.

One of my friends passed away this past week. His name was Brian, and he was a fighter. He and I would exchange emails, Facebook messages and even got to have lunch together while he was in Boston for treatment once, which was a lot of fun. He was there to talk to me through some of my hardest times and despite raging sarcasm always helped me keep my chin up.

I am hoping we, the internet, can do something in his memory.

Please consider donating to the National Kidney Foundation in his name. You can do so at either http://www.kidneyhealth.org  or by mailing contributions to National Kidney Foundation, Team Cormier, 85 Astor Ave.  Norwood MA 02062

He is survived by his loving wife, son, and family which included nephews he could never stop talking about, he loved them so much.

Gratitude

I had another post started and ended up crying too hard to finish it. Why? Cause I’m a sap, that’s why. I cry very easily. It’s embarrassing.

This time it was about the story of a mother and daughter. The daughter has autism. The mother, for reasons known truly only to her but speculated at by those who have both been there and not been there, attempted to end her own life as well as that of her young daughter. There are not words for the horror and fear this sparks within me.

So after I read the story this morning, I sat watching J. His word of the day is again “no”, so every question you ask is answered with that. No one could make “no” sound sweeter than J. His little voice is just a beautiful thing to me. We fought over the idea of sneakers. We fought over wearing a sweatshirt. We fought over leaving his stuffed cat home. It was a struggle and a half this morning until the moment he arrived at his classroom…

I would change none of it.

I am so scared that a day might come when my little boy is a very big boy and he cannot manage how he expresses himself. I am so scared of the idea that one day I might be scared of my beautiful son. Part of me wants to keep him my sweet, loving little bitty (well, not so little bitty) guy forever. I know his nature. I know he is sweet right down to the very soul of himself. He is empathetic, he is loving, he is naturally observant and kind. He has limits, though. When his system is overwhelmed, I do not know what may happen years down the road.

So today, I am thankful for the little boy I now have and the chance to just love him. I hope that as he grows older, supports are always there to help manage raising him and helping him. I also hope that my friends out there who find themselves being primary caretakers also know that hey, we’re all in this together. Let’s not let any one of us sink. If you find your mind wandering off into dark, scary places… Well, I may be crap at phone calls but call or send messages. Raise the red flag and I’ll be amongst those who rally to you to help you get through it.

Our kids deserve it and so do we.

Lessons Unlearned

On July 28th, J broke his elbow from throwing his body around in an effort to self soothe/stim.

It’s what, 2.5 weeks later? He’s back to the same antics.

Crashes his face into the frame of the couch. Crashes his body onto the floor. Jumps off anything he possibly can.

On and on and on it goes.

When he has school and constant busy, this lessens, but I cannot keep up with the demand. My lower back is injured. My body is still not 100%.

This, atop so much else, is just a huge recipe for depression and self loathing.

Of course I know things get better. Nearly always, one way or another, they do. But tonight, as George R. R. Martin wrote in one of his books, “the night is dark and full of terrors.”

The Pain of Perspective

It is not like J getting older is something that happened abruptly overnight. That’s the tricky thing about time, pain in the rear though it may be – it keeps going even though we want it to stop.

The way he communicates and interacts sometimes, I can easily lose track of the fact that he is not a large toddler but instead an only slightly big preschooler. There are so many days I spend with him alone that when I am either out and about alone and run across other children or see him alongside “typical” peers it has gotten to the point that it startles me.

Before I go further I must add a disclaimer, especially for my stepmother and stepsister should they read this: The little children I am about to speak of, like your beloved G, are spots of bright light in my life, even if they’re as fleeting as fireflies to me. They are amazing little people in their very individual ways and I never lose sight of that, especially in the case of your hilarious little man.

That said, I had an experience at the grocery store that kind of struck me dumb. There was this precious girl in a shopping cart pushed by her father. She had to be around two years old, maybe a little less. Her brother, who looked three or four, trotted alongside the cart. She was just a little beauty of a person, charming in every sense, but when I heard her speak so clearly and concisely to her father my heart stopped. She kept saying it, too. “Daddy? Daddy? Daddy?” And she pointed, and she chatted, and she laughed…

Despite her beauty, despite her sweet manner, I had to hurry away from the aisle I was in when I crossed their path. My heart was in my throat and I didn’t know what to do. 

I am grateful to all I hold holy for all the good in my son. I know his strengths. I know his weaknesses, too. 

He’s never addressed anyone with purpose. Only once has he said “mama”, and though he looked so clearly at me when he said it, it’s a phenomenon that has yet to be repeated. He says a lot of words, most mimicked as a parrot would, but people have no names that he uses. Picture recognition? We have it down pat. Labelling of familiar objects? We’re getting there too. Names? Emotions? Desires? I’ll get back to you.

And it hurts in a way that is hard to put into words. On one hand, I begrudge no other child any of their skills and strengths. How stupid would that be?! Every child has the things they excel at and their own method of moving through this world. On the other hand, the stark reminders of where my son falls; the glaring evidence of where he’s struggling and falling behind… It breaks my heart. It scares me. It makes me want to tuck him away and protect him from the very world I am so eager to help him to know.

These aren’t places I can stay for long, these dark holes of “why” and “what if”, but when I visit I cannot help but spend some time mulling over the pain and sadness. It would be a lie for me to say I did not want the magic band aid, the amazing cure-all answer to my son’s autism that would magically allow him to interact with the world with little impediment but that’s not there. That’s not how he’s wired. And that’s okay.

Or, at least, it will be because we will make it work and make it be so.

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.

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?

———————

*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.

Elopement/Wandering

Today, the family of Mikaela Renee Lynch found themselves in the depths of one of the worst horrors that can be visited upon them. Their beautiful daughter, just 9 years old, had wandered away from their home on Sunday. Like J, she has autism. Today, she was found in a creek, deceased. 

This isn’t the sort of subject I would usually write about. This family’s grief, their sorrow and what they are going through is what I count to be amongst my greatest fears for my little boy. He’s just shy of 3 and already a bolter/runner. If he could work the doorknob, he’d be out the front door I have no doubt. He has his own agenda in this world and if there’s a body of water larger than a puddle, he’s right there despite having no knowledge of how to functionally swim or deal with said body of water outside of being within my arms or in a safe bathtub. 

There are people in this world who will blame the Lynch family. I know it. I’ve seen the ugly that is in this world and I have to acknowledge it. I don’t. I can’t. People in this community are likely to be similar in thinking to myself I would hope. Our children, our loved ones – they cannot live in a vacuum. We cannot button them up in safe, soft rooms away from the world. The world deserves to know them and they deserve to know it. We can put up every lock, every barrier, every safeguard but things can, and do, sometimes happen. It’s in these moments we pray for the best outcome and gird our hearts for the worst. It’s in these moments we stand by, ready to support those who face the darkest news.

I have a few resources for those of you who might read my rambling and want to know more about how to keep your loved one with autism safe. There is no 100% fool proof method in this world, but every little bit can help.

AWAARE Collaboration: The Autism Wandering Awareness Alerts Response and Education Collaboration offers great educational materials as well as safety items. It is the collaboration of six major autism foundations and a source of invaluable information and tools.

The Flutie Foundation Safe and Secure Project: The Doug Flutie Foundation works with LoJack SafetyNet and local fencing companies to help families in need keep their children safe. This is very New England-centric.

LoJack SafetyNet: LoJack offers a bracelet program that helps track children or adults prone to elopement/wandering. When emergency responders are contacted they trigger the signal, tracking it to bring your loved one home. Not the most inexpensive of things but if you have a child or adult in your life who is prone to getting away, it may be worth its weight in gold.

I could probably sit here all night posting links to help keep our families safe. My son will have his dog once we finish fundraising, a dog trained to track him should he elope, and I equip my son with two dogtags located on his shoe: One reads his name, the fact he has autism and limited speech, and my number. I had it made here. The other is a MedicAlert tag for emergency responders so that they can have access to his medical history immediately and know he has the delays he has plus other pertinent information if care is needed. These are just some measures to ensure safety but I am sure the great parents I have interacted both online and off have some awesome measures they take too.

I know the Lynch family may never see this but my thoughts and prayers are with you and yours. You loved your daughter in the time she was with you and I know nothing can remove the blame we, as parents, take on ourselves whenever anything happens to or with our children. I cannot tell you that you’re going to be okay tomorrow because you might never be the kind of okay you once knew ever again. You’ll find a new way to be. You’ll learn a new way of living. We, as a community, will be here for you along the way. 

The Hard Parts

There are things that are going to be hard regardless of autism in our lives.

Today, it was a blood draw for a couple of genetic screenings.

There is nothing that can prepare you for these types of things. You know you are doing what is right for your child and yet everything in you is screaming “TAKE YOUR CHILD AND RUN!” even as you sit there, holding them still through something that obviously pains them.

I hate it.

He does not have the words to say he’s hurt or scared. His crystal expression, his anguished cries, all of it is eloquent enough. I can’t explain any of it to him. I can’t walk him through the bit by bit of what’s about to happen, how well he’s doing when it happens, and encourage him to realize how fast he’ll be okay again when it is all done.

This does not stop me. Even as I cry along with him, I whisper in his hear how good he’s doing and how strong and good he is. I whisper how it will all be done soon, how he’s such a brave and sweet boy and how sorry I am he has to do this.

And he wails. Tears stream down his cheeks and he cries, desperate for escape and peace. He hyperventilates and almost vomits. He can’t control his reactions and I cannot blame him for it. I am overwhelmed too.

But he did it. He got through it. It’s done, for now, and hopefully for a long while.

Blood draws, EEGs, sleep studies, physical examinations… The cost of his diagnosis is not one measured effectively by looking at bank statements and hospital bills. It is best judged by the physical, emotional, and spiritual toll. It is brutal that getting him appropriate physical care is painful and terrifying to him. It’s a trauma, no matter how minor, to bring him to the doctor and put him through the visits and it’s a trauma that is not just to him but to myself, but I have to remain strong. I have to do it. I have to hold his hand and see him through it.

But my heart hurts.

He’s my son; he’s my sweet and darling baby boy. It is my duty to protect and nurture him but I won’t deny the pain I am filled with when doing right tears me to pieces inside.

We have one more medical visit this month, May 17th, and we’ll know then how we are proceeding in regards to his tonsils. This might all get significantly harder before it gets better. I just have to buck up and get through this and learn not to cry in front of the medical professionals who think I am insane when I end up crying right alongside my wailing child.

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.

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