J-Bear and Me

learning to navigate the world, j-bear style

Month: June 2013 (page 1 of 2)

The Stare Factor

I’ve seen and heard so much in the past few days and it might be because I’m sick (no diagnosis! I’m a House case! Film at 11?) but I feel so overly sensitive to it all, especially surrounding J. 

So, the topic that’s sticking in my craw right now is the inevitable public reaction when a child like J or his peers falls apart in public.

We’re all human. We stare. Whether we’re staring at the oddly dressed people or staring at the child screaming as though he or she is on fire, we do it. If someone tells you they’ve never judged another person amid that staring I’m willing to bet all my meager possessions that they’re lying through their teeth. 

It’s okay. We’ve all done it. It’s not right, but it’s not a sin worthy of being stoned to death or otherwise punished either. It’s a social condition and one many of us learn from the get go.

Why am I writing this? Because I want the few people who read this to consider the world through a different lens when it comes to seeing that child just losing their mind in a public space. I am not talking about the child very visibly fighting with their parent over an assertion of boundaries and rules, I am talking about the child so panicked and so lost to the horrors of a meltdown that reason can’t break through to them. Their parents stand there with a mixture of embarassment, upset, frustration and sorrow trying to figure out how to move on from there, often retreating from the public eye with their flailing child and hiding away as though they somehow don’t deserve to be in the world.

I’m not so naive as to think the world can change overnight. I would like to think that, given knowledge, at least a few people can be changed. I want to feel that when it is my son who is melting down, for he has before and he will again, that at least one of the people subjecting me to stares is not doing so cruelly but doing so empathetically. I want to think that there’ll be at least one person who will either come over and say “it’s going to be okay” before going on their way or who will just simply take the burden of their gaze off of us and allow us to find center without being glared down like vile enemies.

My son can charm your socks off yet he can also have some of the most spectacular bouts of screaming and panicking you have ever seen. He’s only just three now. Three. These meltdowns are not going to get easier, they’re going to get harder. Louder. Maybe even more violent. They won’t happen every day I pray, but they will happen and are part of living with and loving J and I cannot, for a moment, stomach the idea of keeping him locked away from the world due to the fact a few people are going to misjudge the amazing kid he is or misjudge my hard work as his mother. He deserves the world and the world deserves him. The world deserves all our kids, whatever their struggle may be. 

So, world, in light of that I am asking you for a little understanding. Next time you see that parent and that child, realize that there very well could be something so much larger at play that you’re not able to see in that snapshot of a moment. There are kids who run roughshod and there are kids who misbehave. Mine can be one of them. When you see the ones who are dealing with something bigger than mere misbehavior though it will be loudly apparent and you need to know that we need your empathy.

I’ll stop rambling now, the screaming just kicked in over here. Figures, right?

A Secret…

…that I must confess.

Last week, I spent a night in the hospital. (cue the dramatic music!)

The most dramatic part of it was honestly the odyssey of them trying to get an IV in me that was large enough to handle the contrast needed to give me a CT to check my lungs for an embollism. Many tried. My arms are butchered. All failed and I had a nuclear medicine test instead that means I was festively radioactive of something for a few days.

All tests? Clear. My heart and lungs are behaving admirably but I still have sometimes very intense chest pains and shortness of breath. 

I think I’m possessed by a demon. That sounds logical, right? Totally sane. 

Only it’s more likely I have something as “dumb” as a hiatal hernia courtesy of carrying a 9lbs 2oz and 6ft long monster of a baby three years ago. Now, my son is beautiful and delightful. He was the bestest newborn ever (no bias, right?) and wonderfully well cooked… but he was practically up my nose as I carried him. I could feel his feet well up into my rib cage. I could feel my stomach being knocked around during his delivery. I would not be surprised to discover this all to be the source of my intense discomfort.

Or the aforementioned demon. Or some other House-worthy diagnosis.

So while I’m trying to be full boogie tilt on fundraising, I’m back and forth with low energy and frustrating pain. I have an appointment tomorrow that I hope will yield answers but until then I am sticking with calling this a case of gestating a baby with massive feet messing up my insides forever.

That’s something for the “what to expect” books: Semi-permanent to permanent remodelling of your innards may occur. Be warned.

The State of Fundraising

Subtitle: The Journey of J to Dog.

We’re stagnated in our fundraising, hovering just shy of $6,000. Our goal is $13,000.

Writing this post is hard because I do not want to seem ungrateful. Ungrateful is the last thing that I am in all of this. It took amazing people, filled with generosity and love, to get us this far. It’s been donations of hard earned money, donations of amazing talent, and time spent just simply sharing J’s story. I am blown away by the kindness shown. I try to write thank you cards for every person I have addresses for – If you have not yet received one, never fear, they get written out slowly but they do happen. 

This is where it gets hard. I have to reach further afield to try and see J able to meet a dog that can and will change his young life. I have a press release that just needs a few tweaks to be able to send out, thanks to the amazing Stephen Herron’s help, but I have intense fear of going to that level. Those who know me generally know about the parts of my family that I am fearful of having get involved with J’s life. They ran roughshod over too many other lives and I do not want them exploiting this cause for either their own gain or to try and gain access to my son. My son deserves to be safe from the harm they can cause, so I remain fiercely protective.

So what do I do? I am already putting this all fairly public via this blog and other means. I am also planning a family oriented event, hopefully for late August or early September, which could include a lunch or dinner plus a silent auction of donated items. We’ve had a few offers of donation already and the items offered are pretty darned awesome if I must say so! I am looking for more. If you have leads on items, please let me know and I can either send you a packet about donating or send it along to whoever you think might be interested. My email is galebird(at)gmail.com. 

I am always looking for additional ideas and suggestions. I am always eager to hear what has worked for other people. We’re so close to halfway to our goal and I would love to see fundraising get completed by the end of September (when I dream, I dream HUGE) but it’s going to take a lot of work. Please keep sharing our story if you want! Twitter, Facebook, Tumbler, write it on overpasses (I kid… or do I?)…

Let’s get Operation Dog into high gear! With a service dog, so many more things are “pawssible” for J. I cannot wait for the day he meets his new best friend.

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.

The Unknown National Holiday

Alright, so it’s not that. I may feel it is, but it’s not.

Tomorrow is the third anniversary of this happening:

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And the second anniversary of this: 

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And the first anniversary of this: 

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And generally the celebration of all things J-bear. I’ll write a better post soon but until then here’s a happy face:

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The Wonderful World of Food

Subtitle: Peanut Butter and Jelly or Yogurt Tastes Best at 4am

Not that I am biased or anything but I think I have a pretty awesome little boy. I have thought this since the day he was born. If you have ever been in range of his big grey eyes and his heart melting smiles, I bet you’d be singing the same song or close to. He’s just got that way about him.

Something he has not had about him is a strong appetite. This is a child who was diagnosed with Failure to Thrive at 6 weeks for what we later learned to be a gluten intolerance that made breast milk just make him sick. He had lost weight so quickly that taking the time to do an elimination diet wasn’t in our cards, so to formula we turned and suddenly he was more mellow, gaining weight and drinking down formula normally.  He sucked down his bottles and, as he passed 15ish months of ages, he turned to sucking down milk. Food held only minimal interest, though he did try various things and eventually settled on a very few favorite foods. 

Now, as he began taking solid food, we not only learned the gluten intolerance existed but found that he gagged easily. He gagged often. I have joked before that the carpet in this apartment in which we dwell is vomit colored but there’d been so many times to test the truth of that that it makes me exhausted thinking about it. I own a carpet steamer because vomit happened so regularly. This is why he went to the ENT to begin with, this is why he had his tonsils and adenoids out. 

Now, we knew the surgery would likely cure the snoring but we only suspected it might help with the gagging and eating.

Boy were we in for a surprise.

Somewhere in his recovery process my son has learned what it is like to be hungry and not just that, what it is like to eat easily and be satisfied. It does not hurt him to eat now, though most of his diet is still softer foods. A week and change after surgery, he was blowing through 3+ peanut butter and jelly sandwiches a day, multiple bowls of yogurt and anything else he felt comfortable swallowing. This involved a lot of chocolate munchkins in those first days. 

Is this how toddlers are supposed to eat? Is this what the elusive “normal” people talk about is like, at least in terms of little kids and food? It is wild to me! He would barely finish one sandwich before surgery! Maybe a few graham crackers and definitely a bowl of cereal and a bowl of yogurt each day plus 6+ cups of milk. Oh, the milk we would go through. And now he’s doing 4-5 cups tops a day… 

This is all just so expected yet not. He just seems so happy to try and eat, and so happy to do so with ease… 

Part of me hurts to think that for the first years of his life he had such a discomfort that he could not voice. No one wants that for their child. I am grateful however that at least part of that discomfort has been addressed and will hopefully be able to open up and even wider world of food to him.

It’s either that or I need to start buying stock in Stop and Shop, Yoplait and Welch’s since the bulk of his favored foods comes from them and we’re going through them in quantity!

Medicating a Bear

When a family has their first child, they should be given the option to take specialized training in how to safely and effectively give young children medication via humane darting.

I’m only mostly kidding.

J needs to take pain medication/anti-inflammatory every 4-6 hours as needed. “As needed” has been “get that gross crap down his gullet every 4 hours on the dot or all hell will break loose” since last Monday, as expected. Medicating a toddler is as easy as medicating a feral animal who hasn’t been tranquilized. I truly do feel like I am taking my health and safety in my hands sometimes.

J is 39 inches tall and 34lbs (maybe a little more now). He is all arms and legs and despite looking like a little scarecrow this kid is all muscle. You can tell this immediately at medication time as he seems to sprout four more limbs and just attack, full on. Every limb is flailing and until last night, they were all sharp and pokey (thanks nail cutters for saving my face). Every square inch of his body seems involved in the single minded mission of “avoid the medicine that helps me be able to function”. 

He is given his medication via oral syringe. I generally can get it into his mouth then massage his cheeks til he swallows but there was a short time there where I would end up with most of it drooled back onto every handy surface. We have now added liquid Lortab to the array of scars upon the furniture*. Emergency measures were enacted. Suppositories were given instead.

This kid was livid at the oral medication, can you imagine how that change of pace went over? I bet you’re correlating strange sounds heard in your home over the last week with howling that just must have been him over this indignity. 

So, in all honesty, I’d be absolutely down for those lessons in darting. If I could just dart him while he’s mid-play he’d probably only be livid for five, maybe ten seconds before returning to play and I wouldn’t have to worry about pain taking over his world and turning him into a total terror rather than the mild, goofy terror he generally is.

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* Everything gets cleaned but hey, all the furniture in this living room has been through hell and back since J’s birth. Also, Lortab is only busted out at night. No one likes to see a little kid hopped up on goofballs all day.

Post Surgical Child

As I wrote before, J’s surgery went well. Recovery? It’s like pregnancy and childbearing – read all the books you want but be very, very prepared to have everything turn out precisely against what you read.

It was a standard tonsillectomy and adenoidectomy. He did not have such grossly mutant tonsils and adenoids that he’ll be a legend in his ENT’s office for years to come but they were problematic, so out they came. The surgery was about 30 minutes total and most of that time was apparently spent placing his IV. They had to place it in his foot, which was a blessing and a curse: blessing that he didn’t easily always see it and therefor didn’t pull at it, curse in that when he did see/feel it, it hurt that little bit more it seemed. I was kind of a mess through the morning of his surgery both from intense nerves and from being a ding dong and forgetting to eat/drink. Seeing him go under with the gas was brutal but the nurse anesthetist that was on duty was hands down amazing. I could not have left my son in better hands than that man, the ENT and the nurses present. 

He came into recovery expectedly unhappy. The post-op nurse saw to his pain needs and he sat up stock straight, reached for his cat (who went through surgery with him) and snatched her up like we’d been trying to sell her away from him. Then he laid back down and very soon blessedly slept. The time in the recovery room was long, too long it felt like, but when we got up to the pediatric unit it was for okay reason as he’d been given a private, isolated room set apart from the general noise of the floor. 

Pain management has been our worst complication. Tylenol could not cut it alone those first days and he refused to even consider eating or drinking. The first couple of nights post surgery he was vomiting off and on until they said “why don’t we give him zofran?”. I’m just his lowly mother but good grief I was frustrated at that point! It should have been given long before, just to keep him comfortable! The pediatric on call physician was hilariously awesome though and treated J with such incredible understanding and dignity. 

Then the days just wore on. He would not drink until Thursday and even then, it was a struggle yet he would eat! He would eat chocolate donut holes! He would eat peanut butter and jelly! Just … not drink his milk?

Never let it be said that anything about this child is typical. Ever.

He came home Friday and has been off and on with the whining ever since. It’s been a struggle to nail down how to effectively manage his pain but after several episodes of having his tylenol or lortab spat at me (nice) suppositories were procured and the rear door method was employed. Effective? Yes. Dignified? Not on any planet. Strangely, he’s been more cooperative about taking his medicine by mouth this afternoon. We’ll see if he remains so.

Lessons taken from this? 

— Never underestimate the stubborness of a singularly determined little boy to get what he wants

— Speak up when in the hospital, cause sometimes you get forgotten

— Realize that while your child may sleep in the hospital you plain and simple won’t sleep much and if you do sleep, it won’t be well. It’ll be an hour or two here, an hour there, and most of it will be the most uncomfortable sleep you’ll ever get. 

— Bubbles cure everything. 

The War that Wasn’t.

I have a lot to write about J’s surgery and some other stuff but my mind can’t be there right now. Short story: He’s home, and we’re struggling, but these days (5-7 days post surgery) are supposed to be the worst of his recovery and then he should turn the corner. We’ll see. More on that in another entry at some point.

Wednesday was the meeting with the local schools to set up J’s placement and IEP for the public schools. After the hell it feels we’ve gone through with them so far, I was pessimistic. Lies have been told, miscommunication has been rampant… It’s not been pretty to get to this point.

I am shocked and pleased to say that none of it came to that.

J’s current team members spoke glowingly of him, acknowledging his weaknesses and showcasing his strengths beautifully. The school’s professionals for speech and occupational therapy had a good handle on his needs though the current professionals he deals with rounded out their views a little more I think. The BCBA (behavioral analysis specialist) for the schools had a pretty good view on him too. 

And, without fighting, he’s been offered pretty much all I wanted for him. He will go to school the full year, he will have a substantially separate classroom, his class will have a low teacher-student ratio and he’ll have the services he needs to succeed. He will also have the chance to engage in activities with the larger preschool class as he is ready to do so, so he’ll have time with his neuro-typical peers. This last bit made me extra happy because his best buddy M is in that preschool class and their friend J from playgroup might join them as well. There might be a point this fall where 4 children from Thursday morning Sensory Group are all together again in the preschool… That would be awesome, for all of them.

This isn’t saying that all the children won’t be awesome – they’re kids, it’s they’re job to generally be so – but it will be nice for all 4 of them to potentially have familiar friendly faces to go through their first days of school with.

I now await the paperwork and the “official” IEP letter but all in all, I think things are turning out okay in that regard. I am anxious to see how he adapts to the environment but the summer program is just a half day 4 days a week instead of full day 4 days and half day 1 day of the regular school year. He’ll have time to slowly ramp up to what can be a long day for the little ones. 

Should his recovery continue to go apace, which I have no reason to doubt it will provided he keeps hydrated and resting right now, he’ll start school July 8th. I’m so not ready but I know it will be the best for him. His teacher for the fall will not teach him this summer but other staff that works in the regular school classroom will be there. His teacher for the fall has also invited us and his therapist to come by this Wedneday to hopefully view the classroom and gather pictures to have on file to get him ready for when school begins in September-ish.

So, for now, hopefully the case is closed on the IEP for right now. 

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this happened but we’re slow to drink…..

….. except chocolate milkshakes from Burger King.

My son runs on Dunkin and BK, folks.

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