J-Bear and Me

learning to navigate the world, j-bear style

Month: July 2013 (page 2 of 3)

Frustration!

.. And for once it has nothing to do with IEPs, public schools or autism care.

On 6/20 I went to the ER and spent a night in the hospital because there was a distinct worry that I had blown my heart out or something given the intense pain and pressure in my chest. The discomfort was crazy and I spent the night getting bloodwork, a nuclear medicine test to determine my lungs were free of embollism and finally a stress test come morning. My heart and lungs passed with flying colors. I was discharged with a curt “follow up with your primary care doctor and take some antacids”.

Fun. 

The discomfort has never left and I have felt blown off repeatedly. The GI doc sent me for an ultrasound just to rule out problems in my abdomen.

She never got back to me to inform me I had gallstones. In fact, I didn’t learn about them til my trip to the ER last night because I felt like I was unable to breathe all over again from the unending pain and pressure.

So now I have a gallbladder full of stones I am sure the surgeon will pat me on the head and send me on my way over.

So tired of doctors.

If I go quiet for a while, it’s cause I am that fed up with the medical profession and took out my own gallbladder.

Fabulous Dinner Dates

It’s oh-dark thirty here and I should be in bed. I will be, shortly. I wanted to write this down first.

This afternoon Mr. Pickles and I ended up taking a nap that was way too late and way too long to be conducive to a good bedtime. This should have led to a terrible evening if past experiences meant anything. If he naps too late, the evening is a chaotic disaster nearly every time. I was braced for total fail on all fronts. 

I was hunkering down, preparing to put on heavy padding and bury myself under a fort of pillows for my own safety from the three foot monster in my house when I realized we needed to make our monthly run to Wegman’s out west of us. I love, love, LOVE that grocery story but it’s at such a distance from us that monthly runs are generally all we make. We were overdue to go and it was coming up on the time traffic would die down for the evening. I seized the opportunity, loaded J-bear into the car and we bolted like we had broken out of Alcatraz.

It was awesome.

Traffic? None to speak of. Weather? Gorgeous. Plans? Fluid and completely open to our whims. 

We stopped at IHOP right next to Wegmans and enjoyed a fun dinner with not a lick of healthy food. I figure it’s a celebration of his first week of school and his success there and at the doctor today. He enjoyed a Funny Face pancake, even braving touching the pancake though he would not actually eat the pancake itself. He gobbled down whipped cream and chocolate chips though. 

told you there was no healthy food to be had. Unless bacon counts, cause he ate half a piece of that.

He behaved wonderfully. I cannot even express enough how well he did. He stimmed, yes. He babbled, loudly at times, and he even engaged in a few behaviors I find awkward to deal with in public (harsh head shaking and smacking himself in the face :'(). A lot of people might not have characterized an outing in a restaurant with all of these behaviors as good but they don’t know my boy. They’ve never seen him just spend the whole time screaming, trying to vomit (or succeeding at it), and other upsetting and sad actions. This was him being more organized and more within the here and now and I loved it.

The grocery store is one of the few that he actually enjoys. You see, Wegman’s has this huge train that runs over the dairy section. If nothing else will calm him, that will. Today a car cart was available so let’s just say this boy had it made in the shade. He loved it, remained happy and calm through the entire trip and had no freak outs when I might step away from the cart very briefly to get an item or three.

These are victories for us. Usually, shopping trips are so exhausting for me that I rarely want to go again. I usually miss half my list and end up so exasperated I want to cry along with him. It is a rare day he’s not bolting or stimming on carriages or pulling everything within reach off the shelves.

I love this. I love this so much. I know this is just today and that tomorrow might be an overwhelming nightmare but it was not today. There will be more todays, enough to make getting through the nightmare days worth it. 

Til then, I am going to be very, very grateful for the wonderful date I got to have with my best boy as he ate chocolate, whipped cream and milk for dinner. He will not be a little boy forever and every chance he has to be a “typical” child makes me happy beyond measure.

I Cheer

This is going to come out silly and sappy. Fair thee be warned, I am prone to episodes of this. There are worse things I could be prone to episodes of.

When a parent, be they a special needs parent or not, tells me about something their child accomplishes I cheer. This means that there are things I cheer about that people who do not deal with the special needs community regularly might think are weird. 

I cheer first words, actions, foods… I cheer new things done by children who have strict aversions to the new and unfamiliar.

I cheer a young adult with autism making their way into the world and finding success.

I cheer for a child who eats with gusto after a lifetime of meals equating with horror and pain.

I cheer a child swinging gleefully where such motion would elicit terror before.

I cheer for all of our children. These accomplishments may seem small or silly to some and other accomplishments may seem huge yet all of them deserve cheering for. And I love doing it.

It’s okay to cheer. It’s okay to be excited over something that others may not understand the excitement over. Whether they take the time to learn context or not, you know it. Whether our children outwardly display response to our praise or excitement, they know. Their words may be lacking but their hearts and minds miss so very little. They deserve to celebrate their accomplishments and it’s our job, as the grown-ups and trusted people in their lives, to teach them how. That feeling of success inspires the drive for more success despite every setback that may be met along the way.

Every time they fall, I’ll be there to pick them up even if it is with just a word because I know soon enough it will be time to cheer again.

Quick 4 Paws Note!

In the lovely sidebar I have a couple of other families who are on the fundraising journey alongside us! They too are working for autism service dogs. We’re all at about the same place in terms of fundraising and hopefully we all three see our boys get their dogs right around the same time. 

Fundraising Update: Mabel’s Labels and Team Jacobly

I am so excited to announce that we are working with Mabel’s Labels to help Team Jacobly for 4 Paws for Ability! 20% of sales made via our link (click banner below) goes to our cause and… they’re labels! Help keep your children’s stuff out of the lost and found with these beautiful, convenient and durable labels.

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Having a Sad

Hey, internet: I’m having a sad right now. Hear me out?

I’ve mentioned before that I live with Post Traumatic Stress Disorder. It is an intense, complex thing to live with and it is something that may always be a spectre hovering over my life. I am not secretive about having it but I am selective on letting out the details as to why I have it.

This leads to today’s post.

At least three times at various medical points of care in the past month I have been asked why I have PTSD. There has never been context to this beyond exploring my medical history. It’s never been couched as a concern to make sure that my medical care did not cause a triggering event to it, it’s just been bluntly thrown at me and shaken me badly enough that I am sitting here writing this on the fly before I go pick up little boy.

This isn’t cool, people. You wouldn’t ask someone with depression or whatnot why they have depression or what have you. You see it on the page, you acknowledge it, you move on right? So why is it okay to ask someone with PTSD why they have it? Isn’t that in and of itself inviting a reopening of traumas?

I have enough struggle dealing with professionals in these capacities as it is. Let’s not make it any harder than it need be, okay world? Please? Thanks.

I have a what?!

Today, little bear had his first day of school.

For those unwise to the weather of where we are, if they even know where we are, it has been hotter than the devil’s armpit for over a week now and we’ve all been slowly melting off the planet. Most homes in this area were not built with central air conditioning in mind so you can imagine how miserable some of us (ME!) are. This had me so worried about J’s first days of school because he overheats in the blink of an eye. He’s getting better about realizing he is thirsty but if you turn your back for a second it seems he turns red and looks about to faint. It’s not fun.

Now you’re equipped to imagine my excitement upon walking into the school to find their air conditioning had broken. It was dead as a dead thing could be and those classrooms were stuffy. However, his teacher greeted him warmly and he had two familiar faces in  his classroom: the BCBA for the school and a little girl who was in group for a few weeks with him. He cried going in, cried entering the classroom, cried as he remained in the classroom without any of his people. 

Now, cut to 11:30 this morning. 3 hours after dropping him off, I returned to pick J up. All of the other children come jogging out to their respective people, happy as can be. J is happy too, but unlike all the other tidy children I ended up with a runaway from the Lord of the Flies. He was covered with sand and marker. It was hysterical to me. Only J could leave his first day of school looking like that. He did well though and the sand kept him from melting down non-stop about being at school. Tomorrow, I hope, will be even better.

It dawned on me as we drove away from the school that holy cow, I now have a kid. I no longer have a baby (that ship sailed long ago), I no longer have a toddler or any other variation of tiny child. I have a full-fledged kid. It’s like by walking through that door this morning he was accepted into the Secret Order of Kid-dom and given all the rights and privledges thereof. Let me tell you, it feels weird.

He is my baby of course. He’s my little pickle boy and could be a 6ft linebacker and I’d still likely see him that way. It feels weird to no longer see him as so small a child and I cannot quite put that into words. It’s as things should be and of course I want to see him grow as I am so eager to know the person he will grow to be but part of me mourns for that which is past and done now. I miss snuggly baby cuddles and sweet toddler antics. I miss the unsteady steps and the uncertain view of so many things this world has to offer. I love the little boy in my house right this second, but this is going to take a lot to get used to.

Like a true bad parent, I only took one picture and as a staff member is in that picture I’m not comfortable posting it. I will take more as the weeks wear on.

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A fundraising update: I am submitting the information to Mabel’s Labels tonight! They have worked with 4 Paws families before and I am excited to add this to our fundraising fun. 🙂

Mabel’s Labels Are Go!

J-bear starts school on Monday. That means Get All The Things Ready.

Backpack? Check. Lunchbox? Check. Extra set of clothes? Check. Diapers? Check. 

You get the picture.

As I was approaching this situation I realized I was going to be writing on a LOT of stuff with sharpies. Little kids lose stuff. It’s part of being a little kid, or any sized kid. J has to bring cups and/or a thermos with him every day as he only drinks milk so those need to be labeled, his sandwich container needs a label… Heck, even HE is labeled via a tag on his shoe!

Now, I could have gone the sharpie route but the writing is not always easy to read. I could have gone the embroidery route in terms of his backpack and lunchbox, but even though I sprang for LL Bean products I didn’t truly want to put his name that loudly on every single thing. Then I remembered it…

Mabel’s Labels

This is a company made by four moms who know the frustration of their child’s things leaving the house never to return again. They created fun, durable, washable and reasonably priced labelling products to help busy parents like me and busy households get their stuff to come back home again. I heard about these labels when J was a new baby but forgot about them til a couple weeks ago.Image

Now, when the labels arrived today I was not sure what to think. Once I opened the envelope though I knew I had made the right choice in bringing my business to this great company. The labels are beautiful, bright, cheerful and clear. I have more than enough of them, plus in a great variety, to get through the school year and even beyond. I am excited to truly test them out in terms of their dishwasher safeness but so far, I am very sold on these products.

Now, in the spirit of true honesty I must state this outright: I bought these labels. I am a paying customer who is very, very, very happy with my purchase. This may seem a goofy way to seek to simplify my life but if I have to write out one less thing in the course of a day my hands, they are so much happier for it. If Mabel’s Labels can do a fundraiser with us to help fundraise for J’s service dog, would folks be interested?

4th of July

Best part of the Boston 4th of July Fireworks besides me getting weepy over the tributes to those touched by the Boston Marathon Bombings was hearing music from “How to Train Your Dragon”!

Enjoy:

I’ll write more when I am not melting like CRAZY.

Ni Hao, Internet

Yesterday, J visited his ENT for his post-op check up. He has healed beautifully, which is awesome to hear, and unless something different goes wrong or he has issues down the road we are discharged from the ENT’s care.

This is good to hear because despite the fact the ENT is a great doctor (Dr. Doolittle, he has offices in Winchester and Woburn) he scares the daylights out of me. It is just the unfortunate side effect of his build and demeanor. He’s not gruff or anything, I just don’t know him, can’t read him and immediately perceive him as a threat. Sucks but that’s reality. 

J has no such qualms. Despite the fact this is the man who operated on him, he was completely cool with office visits and even for a brief moment opened his mouth on his own for the doctor to inspect his throat. When the doctor said “farewell”, my non-verbal son answered him with a firm “ni hao” and then marched us out of the office to continue with our day. 

Ni hao is Chinese for hello. There is a little cartoon called “Ni Hao, Kai-lan!” that is apparently a thing on Nick Jr. He’s seen bits and pieces and this is what he took away from it. 

“Non-verbal” is such an odd situation to try and explain to other people. They see a little boy who makes a lot of noise! He says a lot of words, or approximations of words most of the time, and he sounds like he’s carrying on fantastic conversations. He mimics the cadence of common conversation beautifully. He can parrot a lot now, but what people who don’t spend significant time with him miss, through no fault of their own, is how little of what he says is functional. Help, please, thank you… Those come on a regular basis and with purpose. Bye-bye is pretty solid too, but the words that get used appropriately come and go with the wind it feels like. School will be a godsend for him as it will reinforce structure and language skills but for now it’s all a crapshoot.

It’s pretty amazing to me still how expressive he is. You can never mistake his mood. I’ve written about how he has a face like glass before and I love that about him. That coupled with his wicked little sense of humor keeps things lively. He has also learned to turn those big grey eyes up at strangers to melt their hearts before they can think ill of anything odd he’s doing, which works for now but I fear the day it begins to fail him. 

Hopefully that’s a long way down the road.

Anyway it’s about seven hundred degrees here and ants are attempting to take over this slum apartment so off I go to kick some insect butt. Wish me luck.

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