J-Bear and Me

learning to navigate the world, j-bear style

Tag: day by day

The War for Ice Cream and The Friendly Dog

Two unrelated stories coming up – they just happened on the same day. Those of you who read this may soon find themselves sick of my random stories from our days but when J has a success, it’s nearly always parade worthy to me. ūüėČ

So the ice cream…

Those of you local to the northeastern MA area know about Jordan’s Furniture. This location I speak of is in Reading. It has an IMAX, a trapeze school, a Fuddruckers and an ice cream shop. You know, all the things a furniture store needs, right? Their ice cream stand is Richardson’s, which is so… so… SO good. Seriously. Check out their site. Apologies to my lactose intolerant friends but I have a deep addiction to the ice cream, as my overly ample hindquarters can attest.¬†

Here’s the trouble though: Jordan’s is very echoing. It is a little oddly lit when you enter, filled with garish colors and the loud sound of the water that makes the Liquid Fireworks show. Whenever the Liquid Fireworks show is going on, there is loud music booming through the area. It’s pretty intense even for me and I am not dealing with even a fraction of what J is. Previously, he is nearly universally done everything in his power to get the heck out of there.

Today, it went a little differently.

We arrived just after his occupational therapy session so he had had about an hour of work on his sensory needs to allow him to be more calm than he usually is. The place was blissfully empty, so we took our time entering and explored very, very slowly and carefully. It took a long walk around the display floor before returning to the open foyer/location of the ice cream stand before he would even consider making an attempt at getting our ice cream. 

When he grew scared of the Liquid Fireworks, we sat down out of the way on the floor and he tucked up onto my lap so I could hold him snugly while he watched. He gradually began to relax and when the show ended, we got up and slowly made our way to the thankfully empty counter. As I held him, we ordered and he watched the young lady make our milkshake.

I might be biased, but that little man earned his ice cream with his good, hard work.

He pulled at me, he said “all done” and “bye-bye” a few times, but with every encouragement to keep trying he kept trusting and¬†tried. This was what felt like the equivalent of asking a grown adult to bungee jump. He eased his way to the edge, glanced over, edged back and repeated the process until¬†he¬†was ready to jump.¬†

And he did it.

We celebrated with our milkshake and I looked a fool cheering for him when we made it back outside.

———————-

We got home and were walking to our front door when a kindly older lady and her small dog were walking along behind us. Her little dog, a shih-tzu I think, scampered right up to J most curiously. No aggression, mere gentle happy friendliness. J turned around with a big smile and said “dog!”. We asked permission, as we’ve been practicing approaching animals respectfully (sorry C, the cats got the worst of him yesterday) and he got to pet the sweet little dog. The way the two just acted like long lost best buddies made me and the dog’s lady laugh. Even as they walked away, the sweet dog was looking back longingly at J and he at her.¬†

It was too sweet. I hope his service dog has the same gentle, loving disposition and looks at him with similar adoration.

Vomit Comet

This is what my life has come to.

I’m writing a blog post about puke. Vomit. Yarf. Barf. Technicolor Yawning.

Whatever you want to call it, I’m the weirdo sitting here writing about it.

J-bear is not the guy who gets ear infections by the dozens. He is not the kid with a constant runny nose. He is not the kid with the weird rash on his butt year round, though he’s occasionally known to sport one as most children in diapers do. I am blessed in some ways.

In another, I am cursed. I have the gagger. The puker.

Now, usually, the gags and vomits just occur pleasant places like at home on my living room carpet which, thanks to our slumlord, is already vomit colored. Convenient, right? He has gotten the kitchen floor, the bathroom floor, the bed and anyone who doesn’t move fast enough too. It’s sad, it’s frustrating, it’s gross as all get out… It’s a part of our lives. There is no rhyme or reason to this vomitting.¬†

Now, come to this week, and he’s vomited on not one but two of his therapists. Neither scenario has had any commonality beyond a therapist being in the line of fire. Once, he’d been upset immediately prior. Today’s? Nope. He was in SUCH a good mood. He’d woken up this morning, had a nice breakfast and a nice bath followed by a long massage that left him content and as calm as he ever gets. He marched into speech pleased as punch.

THEN WENT FULL EXORCIST.

Okay it wasn’t THAT bad but when you’re the mom of the kid that puked, it might as well be. Guilt, embarassment, all of it lines up behind the deep worry that exists for your child.

So today, we go again to his doctor and go “please help us”… Something is clearly going on. He has large tonsils, which we’re investigating having removed. He has a sleep study on 4/24 to see if there’s any reason we should not go through with the tonsilectomy. Is there something more than that? Are we missing something big? My son is a scrawny little fella. He has no weight to spare… I can’t have him vomitting one or more times per day. His system can’t afford it.

Thank you for tolerating this entry about puke. In thanks for your suffering through this, here’s a cute picture of a not pukey J:¬†

Image

He’s not even 1 in this picture and just SO HAPPY about those toys!

What a Week

This past Tuesday, we visited the ER in the wee hours of the morning. I wrote about how frustrating that experience was.

Wednesday afternoon, J spiked a violent fever and would not accept fluids. His diapers were dry, he was starting to vomit up what little he had taken in… We returned to the ER.¬†

The experiences were night and day. This is why we should in future seek out a pediatric ER that is open in the middle of the night. This hospital, while great, closes the pediatric ER at midnight. 

The nurse was warm, understanding and respectful of J. The doctor was thorough, compassionate and most of all she listened. When I expressed concern about his throat, she braved checking it even though he hated it. She noted that because he is non-verbal, she was going to be a bit more thorough than usual which was fine by me. He had a chest x-ray and abdominal x-ray, both of which were handled by a very gentle and very patient radiology tech. I held him, she coaxed calm from him and between us the experience was not nearly so awful as it could have been.

Both x-rays came back clear, too. Major phew.

Apparently there is a violent virus going around and if there is a violent virus going around it comes to visit poor little bear. His doctor noted at our follow up yesterday that this fever might linger, as it had already, but knock on wood he’s seeming alright this morning.

I am up to my eyeballs in vomit and mucous stained laundry. I am wearing hot pink sweatpants because that’s all I had clean. I cannot remember the last hot, good meal I had.¬†

But the fever is down. He’s showing signs of his usual mischief. He just dragged his snotty nose across the top edge of my laptop screen (OMG REALLY?! guh. yes I took time to sanitize the daylights out of THAT maneuver). ¬†He will have a bath later and hopefully we will have a nice if low key Easter.

Happy Passover, Happy Easter, Happy Spring, Happy whatever holiday you might celebrate this time of year and if there’s none – Happy Saturday and enjoy the Feast of St. Markdowns on Monday.

Always a Party

You have not lived until you’ve had a diaper explode and leave its mark all over your living room. We’re not talking bowel fail here, we’re talking all the innards of the diaper decided to be out-ards all over the place. I mean, seriously. It was a Greek tragedy all over the living room that required vaccuuming, carpet steaming and the burning of sage to cleanse the evil spirits that must have once possessed that diaper out of the house.¬†

J didn’t care. He rarely does. As long as life goes apace for him he doesn’t give a care about these random crash and burns. Meanwhile, it’s me losing her marbles over omg another night spent with my best friend the carpet steamer.

————-

Conversations have been hilarious the past few days because J decided he has to supply your answer, too. Before, conversations went like this:

J: Help.

me: Would you like milk?

J: Milk, please

me: Okay! 

and we’d go get milk.

Now? 

J: Help

me: Would you like milk?

J: Milk, please. (a pause) Okay!

Me: ….

…. Apparently, whoever he’s talking to at the moment never ever says no. It’s both funny and minorly frustrating. Definitely more the former than the latter.

—————-

Yesterday, we completed his one year evaluation with Early Intervention.

I was SHOCKED that he was delayed in social, cognitive and communication! And if you believe that, I have oceanfront property in Arizona to sell you.

He improved markedly if you look outside the numbers. His skills have grown a lot in the past year, which is so promising. It makes me so happy and proud of him to hear that. The numbers look very similar to last year’s but the test asked a lot more this year than it did of him last year due to his age. I understand that. He struggled mightily with the testing as he is not at all a man of quick transitions but we got through it and we never have to do that particular assessment again.¬†

The best part of the whole thing was he saw his whole Early Intervention team Рhis group leader, his coordinator and his early intervention OT Рin one spot for the first time ever. It blew his mind to see his group leader outside of the center! He had fun playing with them all and reminded me how sad I am going to be when our adventures with them are over come June. 

I am sure I will have something more deep and profound to write soon. The fun never ends.

Sigh

So, no word from Floating Hospital about this sleep study. Meanwhile, he gagged and cried so hard last night after waking up gagging that he has petechia (little red dots where tiny capillaries broke from the force of his coughing/gagging/crying) all around his beautiful eyes.

The hardest part? Not the throwing up. Not the cleaning up. Not any of that. It was the fact that I could not tell what the problem was. My son could not tell me what was wrong, only that something WAS wrong and then the guessing game ensues. Trial and error, trial and error, all while this poor child is fearful, in pain, etc. It is about the most discouraging part of all of this stuff. 

Now, do not mistake me. Every experience teaches a little about what the causes COULD be, and yet, inconsistency can be king somedays. A parent in my parents group notes her child to be “consistent at being inconsistent” and ya know, that’s exactly how I am learning autism to be for my son.¬†

One day, he’s mister present. He’s engaging in his own way, completely involved in whatever therapies are happening that day and truly delighted to be alive so it seems. Then there’s the other days, where stimming and regression are king and it feels like nothing positive can get done at all. And then, there’s days that are a combo of the two. Most days tend to be a combo, though one always shows more heavily than the other.

Today is more positive than negative, for which I am grateful, but man do I ever need to get a response on that sleep study so we know where we’re going and what we’re doing. I want him to have relief, and I want the answers others can give me for him right now.

———–

The lessons I learn:

J cannot tolerate sitting in a regular shopping carriage and if allowed to run free will do just that. He’ll stim on the carriage, at peril to himself, and stim on everyone else’s too. It’s frustrating but hey, he’s overwhelmed in big stores. I understand why he does it. There are more days than not right now where, if it’s available, I can use one of those impossible to steer mega carts with the forward facing bench or kid seats and we’ll enjoy GREAT success. He’s happy, able to feel secure while interacting with me when we shop and I’m happy cause I can get the shopping done without being so worried about him.¬†

Today he was very dubious about shopping carts at all. I let him pop up into the seat on his own and buckled him in and he wasn’t too keen. He had a little meltdown at the pharmacy and couldn’t settle. So what’d I do?

Strap his cat in beside him.

Why didn’t I think of this months ago? I wish I had a picture. J in one seat, cat in the other as we cruised Target. I could have shopped all day, he was so comfortable and content.

My life is all about whatever gets us through the day.

God help us all if anything ever happens to Fat Kitty. We’ll all be screwed, then.¬†

Long Time, No Write

The rumors of my demise have been greatly exaggerated.

We’re still plugging along, doing our thing. Here’s some interludes.

Tonight at dinner, J was standing on his chair (which he’s not supposed to do of course) and he was conducting an unseen symphony before he picked up a chip off his plate. The chip had gotten ketchup on it. He gasped dramatically and started saying sorry repeatedly to it while trying to repair the damage. When repairs were impossible, he ate around the afflicted part and abandoned the rest of the chip.¬†

This is my life.

Yesterday, at an early morning OT session, he crawled into his tunnel and did half his session from within it. He’d crawl in and out, pausing only to attend to tasks from his OT and then back to the crawling. It seems so silly but it was an effective motivator. Just have to remember to keep the tunnel available.

——–

Today we visited the ENT. His gagging has been awful since, well, solid foods began. It was always assumed to be behavioral. He’s extremely defensive and sensitive about his mouth. However, it’s been discovered that the gagging cannot be recreated behaviorally and not for lack of trying. He also has episodes of lapsed breathing (!!!) and snoring while sleeping so off we went to try and solve this mystery.

We saw Dr. Andrew Doolittle in Winchester, MA, and though I was uncertain at first I appreciated his approach to J’s situation. J is a seizure risk. His usual response to what he saw in J would be to schedule a tonsillectomy and see how things go from there. However, this might not be the root of all things with J. So we’re going to do a sleep study then consider our options from there based on what that tells us. I like the cautious approach even though the study will be difficult. I would rather have answers and the ability to consider other options before braving surgery and, more frighteningly, sedation.¬†

I’ll update when we get a date for this fiasco to go down. I think I’ll need to get those conducting the study to sign wavers, for serious. J’s no picnic with these things on a good day, never mind tired and angry.

————

So that’s the way our cookie crumbles these days. I’ve got a hilarious little boy telling me tall tales in minion, reciting scenes from movies (thank you, Megamind) in his own manner and just generally being trying but hilarious. So much of his behavior can be seen as him being 2.5 years old. Other things, well, that’s all you a-word. All you. There’s never a dull moment.

Insurance and Interludes.

I am gearing up for a battle. I am not sure who it is against, if it is versus Blue Cross Blue Shield of MA or if it is versus my son’s doctor’s office.

Here’s the tale.

I requested, in early 11/2012, that a referral be processed to the Occupational Therapy clinic my son was about to be evaluated at and now receives therapy through. No response as you only speak to a voicemail. Several weeks in, the clinic received no referral. Not only did I call them, I also brought over a sheet with a list of required referrals to Occupational Therapy at said clinic for 2012 and 2013, for his evaluations at Floating Hospital, etc. Everything was laid out in very specific detail. I ended up giving them this page TWICE.

Fast forward to this month. The referrals have never appeared. I call and speak to the office manager, who forwards me to the one woman who processes referrals. She hits me with “you never requested them.” I hit back with dates, times and visits on which I gave them the printed list of what he needs as I know it’s a lot. They send referrals. The referrals are for the wrong dates and wrong¬†person. I call back. We return to the “you never told us” line. I repeat all the times I told them. I get a hang dog return call saying it’s all straightened out.

OT clinic calls me and states they got the referrals. For¬†speech therapy. J does not begin speech therapy for a month and I had mentioned it to no one at all at this point amidst the effort to sort out the occupational therapy nonsense. I call back the woman at J’s primary care doctor. She huffs, sighs, says she’ll “figure it out”. A couple of days later I get a sing-song voice mail saying it’s all taken care of but you only get¬†eight visits for the year, good luck and have fun!

Are you kidding me?! This child, by all recommendations, needs far more than eight visits in a calendar year!! He goes twice a week! We’ve already blown through the 8 visits and it’s not even March!

Now I have to fight someone to get this straightened and face the fact that I might have to remove J from a clinic that is amazing for him to another that might not meet all his needs quite so well. I am nauseated and frustrated at the idea of this. These women, alongside with his ABA therapists and EI case workers, have been life changing to him. This combination of team members has fit together just right. I do not want him to go somewhere he is not so well cared for and I am uneasy about our other options. For now, I am stuck in the hurry up and wait.

————

Yesterday morning at the OT clinic, a boy of about 8 or 9 came into the waiting room while we awaited J’s appointment. My guy has been working hard on greeting people, which comes across like Wall-e greeting E-va for the first time. He walks up and gets a little too close, then says slowly “hiiii” with a funny little wave. There’s a warm smile to match all of this but it’s still that little alien odd. Most children either ignore him or they shrug it off and either play with or around him, no big deal. This little boy made my day and I so wish I had thought to tell his dad what a good boy he has. He said hi back to J and asked him what he was playing, then tolerated J’s staring and curiousity. He was very kind to him in his own way.¬†

I appreciated that a great deal. Some kids just get it, and this kid was one of them.

———————-

What happens in Parent Group doesn’t always stay in parent group. A final quip:

You haven’t lived til you’ve talked about poop charts and flame throwers in the course of the same conversation.¬†

Change of Plans

I was going to write a post about fear, about the heavy things that weigh on my mind.

Then, J-bear went and learned a new skill today.

… He learned how to play catch.

My son, who has absolutely no reflexes when it comes to even raising his hands to prevent things thrown at his face from hitting him, learned how to play catch. I’d been standing behind him, holding his hands and showing him physically how to catch a soft ball tossed to him by a therapist these past few sessions just as a lark. He never even attempted to catch it once before today, just thinking it was hilarious when the ball bounced off him.¬†

Today, I let his hands go and he caught it. How we cheered! He’s played catch (throwing and catching all on his own) a few times with me now and like a fool, I end up near tears every time.¬†

So many things are so very sad and scary to me these days but this little victory and all those like it are what I live for.

Moment by Moment

Thursdays are J-bear’s playgroup. I will never be able to say enough about how awesome the children, parents and staff involved with this group are. We have such an amazingly dynamic group of adults with a bunch of hilarious children.¬†

Today, for example, all the children went under the parachute together! They laughed and laughed! After seeing some of these children not interact or laugh at all, this was such a thing of beauty.

That’s what life is all about, those sparkling little moments you need to seize and treasure.

A lot of my parents and grandparents generation have stated to me that “we spend so much time teaching them to walk and talk just to tell them to sit down and shut up” when it comes to discussing this generation of little ones. They are so right in some ways. There are days I very much wish J-bear was capable of sitting still without being desperately ill or asleep. I can’t find myself actually wishing him to completely sit down and shut up though.

This is by no means a nomination for sainthood. Shoot, I caught the little guy by the lip today when he came running and I didn’t notice how close he was to the dishwasher door as I lifted it to close it. Human? Filled with flaw? That might as well be tattooed on my forehead.

I waited a year for J to speak. A year to have my son look up at me and say something, with clear and definite meaning. He had babbled in those first months venturing towards the development of communication but what words he’d gain held no meaning and disappeared. It was when we added in more intensive therapies that the key began to turn in the lock which before had been stuck. He spoke to me. He signed to me. It was imperfect and the vocabulary limited but my son¬†spoke to me. His little voice, even when he turns it up to 11 amidst his experimentation to learn how to modulate everything he does, is one of my most favorite sounds.

This past Christmas no one stood a chance in topping the gift he gave me. He had climbed into our Big Red Chair and looked up at me as I went to pick him up. He met my gaze with a presence so rare for him, a clear and lucid directness that one only sees in fleeting glimpses. It lingered for almost a minute as he smiled and said ‘Mama’. It is the first and only time I have ever seen or heard him say it.

I never need to hear it again, though it would be nice to do so. It was perfect. It turned into a moment forever etched on my heart.

The key I have found to coping is going day to day. I know my son oh so well, as most parents do with their own children, yet there’s always those curveballs that come up. A skill he might not have had down pat today could be that which comes easiest tomorrow. Words he used with casual and spontaneous ease today might vanish next week only to return again a month later – or never again, to be replaced by other actions. It all keeps changing, sometimes faster than my mind and heart would like, but the little moments of pure joy linger on like a light in the darkness to lead me forward.¬†

I live each day for the joy he brings me in exchange for having his needs met and his wants considered and explored. The sacrifices are tough but the cost of not making them is too painful to consider. These children are only this small for this long and only this receptive for this long. There are so many things out there to make me sad. I do not want one of them to be myself asking down the road “why didn’t I do more?”.¬†

 

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If anyone happens to read this and has ideas for something to post about, I’m very open to hearing them! You can contact me via comment or at galebird at gmail dot com. Hopefully I can master this wordpress thing and start including some nice picture posts soon!

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