J-Bear and Me

learning to navigate the world, j-bear style

Month: March 2014

Digestive Fail

That stomach bug that’s going around?

It struck with a vengeance yesterday.

Now, little kids and illnesses that cause digestive fail at either end of the process are just a bad combination to begin with. It’s even more scary when the little one in question cannot adequately communicate what’s going on. He knew he felt poorly, but had no way to point out things were bad until, well, they were bad. Thankfully we were at the bathroom sink when the first sick struck but oh my stars.

It feels alarmist to call the doctor whenever he hits an illness like this, yet let me go back to a tired rant I often make: My son only drinks milk. Can you see how this can be a very awful thing when one is suffering a stomach bug? Yesterday morning and early afternoon was downright ugly thanks to this fact… But then, then he stopped drinking. He stopped producing wet diapers. He went from “mildly ill” to “ER visit” in hours.

We are blessed to live in a wonderfully thriving suburban area. There is an amazing ER not five minutes away that has a fantastic pediatric staff. The nurse there took in what was going on, understood that we had sensory issues to go alongside all the illness, and between she and the doctor put a plan in motion to get him on the mend withOUT subjecting him to the torture of needles. It began pretty rough, for the only zofran they had to give him was in dissolving pill form and my little gagger, well, gagged. He managed to keep it down though and within two hours was asking for milk. Milk that he kept down.

However, they sent us home with those dissolvable pills. What a nightmare! J’s gag reflex is so overly sensitive there’s just no way to allow them to work. He made himself so sick on one in the middle of the night that I just dissolve them in a little water and deliver the medicine via syringe. It’s imperfect, but it seems to be working.

Now little man is sitting watching a Thomas movie (of course) and being more like his usual self. It’s scary to see him so sick that he just doesn’t move. He’s constantly in motion, a still J is an aberration and a half and yet he wouldn’t even get up to walk out of the house yesterday. I swear it feels like I did little more than cuddle him from yesterday morning til this afternoon.

I never thought I’d miss his screeching but hey, anything to prove a return to our brand of normal, right?

Autism Awareness

So we’re getting to the month of April, and April 2nd is Autism Awareness Day.

Now, this is where things get hard.

I can no longer support Autism Speaks. I cannot support an organization that relies on terror to spread a message, that cares not for the damage it does to individuals in the pursuit of more money that isn’t necessarily going to the community they supposedly serve. I keep in mind that one day, J will be an adult with autism, and I want him to know that he is embraced for who he is, and that autism is part of that package deal and it is not something to be feared, demonized or treated like a plague.

Numbers were released by the CDC today that showed a marked uptick in autism cases in children. The numbers feel flawed to me. They were only taken from certain states, for example, rather than a sampling from all 50 states in the union. Also, why does this number matter so much? Does one person with autism deserve less care if there were only ten in the country as opposed to hundreds, thousands, even millions?

No. These are our children, our brothers, our sisters, our cousins, our aunts, our uncles, our friends… These are people.

How often do you hear about adults with autism in the media? How often do you hear about them in a positive light?

These are the questions we need to start asking. We need to start putting role models out there for the children that the news focuses on. They deserve to see where they can go.

Yes I can get on a soapbox with the best of them!

A lot of families who live with autism every day say similar to this but every day in our lives is autism awareness day. We live it and breathe it and struggle to learn to speak it, and it’s a remarkable journey to be on even when it feels so bewildering and frustrating and harrowing. Every step, every lesson… It’s all amazing. J creates the rules then breaks them and makes me learn everything anew and I have to admit the challenge is invigorating. Not everyone can step up to the plate – we’ve already had people fall to the wayside in our lives, by their sad choice – but those who do are richly, richly rewarded.

Someday I will learn to write more neatly and straightforwardly. That day, alas, is not today.

Great Nana

My son had an amazing great nana. It weighs heavy on me that he was born ten years too late to know her, but he really did have an amazing great nana.

It was 14 years ago today that she passed away. Technically, it was 14 years ago late last night that I said goodbye.

You see, she had this way about her that was all about protecting the youngest of us. The youngest of us involved directly in her care at the end of her life was me. The absolute worst of her cancer, I never saw. This is pretty remarkable when you realize I was there every weekday from between 5 and 6 in the morning until 5 or 6 in the evening. That’s a lot of hours to pass with very little remarkable happening.

But that’s how it went, and if she had a tough go, it was always when I was not there.

This is how the last night of her life went as well. Liver cancer is a horrible way to go. Ammonia that a healthy liver would filter out builds up in the brain, robbing the person of consciousness and coherence. Yet, I must say, I am grateful for how she managed her end of life. She decided when she was too tired to bother taking the horrible medication that kept her going* very quietly. I would offer it, she would gently refuse, and though it broke my heart hospice had prepared me and I respected her wishes and never pushed the issue – nor did anyone else. She saw the people she loved, she ate a few bites of the Irish bread I made from her own mother’s recipe (after playfully scolding my uncle for pretty much trying to eat it straight from the oven!) and she made her peace. Father Alvaro had discreetly offered her the last rites, unbeknownst to us, yet still came in the dark of night as she lay dying to pray with her.

I cannot forget those last hours, and yet, I am glad I could say goodbye. I feel very strongly that she knew I was there. She reacted to having her hand held and to being talked softly with, her labored breathing calming. I told her how much I loved her, that much I know.

But it was after I had gone home that she passed away, in the room I had spent nights in with her as a little girl, and when I returned the next morning, all was gone.

There are people who believe that one should “just get over” a death of someone you love. That it should not hurt for so long afterwards. I think that notion is so wrong. You shared a part of your heart with this person… It’s never, ever going to be the same again. You don’t get over it, you only learn to live a life with this raw scar.

I wish J could have known her, and she him. Oh, how she would have delighted in him! He has ever bit of her mischief and has since his infancy. He has her stunning smile as well, and I feel like she just would have loved him as much as she had loved me. I know he would have adored her as well, for her gentle way is just the sort of thing that would draw him in with great ease. They could have bonded over the fussy way they view food, something we all three share, and she could have delighted in seeing Papa’s ears that poor J could not dodge inheriting. (Seriously, taxi cab with the doors open, I love them)

I just miss her. I miss the warmth of her presence most of all and there isn’t a day that passes I don’t wish I could have had one more hug. Just one. I am a terrible granddaughter as I have a terrible time going to where she is buried but I can’t see her there. It hurts a lot to go. I see her so many other places instead, from the beach near her home to Castle Island to even the airport**. I just hope wherever she is, she and Papa are at least proud of their great-grandson and keeping a very, very good watch over him.

A picture for your tolerance of my blathering:

nananna

Nana and Papa on their wedding day.

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* = The medication was this awful orange-colored too sweet syrup that she’d have to take several times a day. When she first started taking it I would mock threaten to freeze it into popsicles so it would take longer to have a dose. My humor was not appreciated.

** = When I was a little girl, I firmly believed that every plane that flew out of Logan was either going to or coming from Ireland and that they all belonged to my nana. Not even a joke.

Bad Days

There are times where it’s really easy to hurt; to ache and cry without reasons you can neatly explain to others.

March is generally mine.

Maybe I am a little too involved in Roman history but mid-March seems to be an incredibly coincidental time for betrayal and/or pain in my life. From uncovering deep deceits from people I had once trusted to being walked out on as my grandmother lay dying to sitting by Nana’s side as she prepared to say goodbye… It’s not a good month for me.

I really do beware the Ides of March.

It’s hard to explain this pain away, and why it runs so deep and so raw. I don’t think it will never not do so. It’s like a yearly purge, but for some reason the universe likes to drop things on my when I am at my weakest. The physical body  is willing, the emotional… Not so much. Not so much at all.

And yet, living life as this apparently terrible person who is believed to deserve so much pain, I was given this… this overwhelming gift. When I least expected him, here stormed J, determined to change everything I knew, believed, or felt. There are so many reasons why I likely never should have had J, from the physical to the emotional to the mental to the well, you name it. I am sure there are people in sight of this post who would give you a laundry list if you so asked. Heck, up until my first ultrasound, I was one of those people.

But then I saw him, teeny tiny him, looking like a circus peanut on the ultrasound screen and wow.

It is cliché to say my life changed in a moment but little else could describe it. It was a whisper in my ear from a voice I missed so badly saying “you can do this”.

There are a lot of ways in which I do not deserve my sweet son. There are a lot of days I would likely tell you I am at the end of my frayed rope and will be listing him on Craigslist*. Yet he’s here, and he’s … stunning. Beautiful in every way a person can be beautiful, a walking glimpse of all who came before and who will come after… A wise young woman would talk about “the good stuff” and holy cow he is every inch what she was talking about! Everything good from the past is right there in him.

And I try to remember that on the bad days. I try to remember it on the good days too but it’s on the days I am the lowest I need it most.

Ted E. Bear and the Gang

Everyone, meet Ted E. Bear. Ted, meet everyone.

Blue Bear

He says hi. I promise.

 

So during February vacation I got this wild, insane idea to take J to the mall to try Build a Bear Workshop. You see, he’s in this phase where if it is not Thomas the Tank Engine toys he’s obsessing over, it’s stuffed animals. What could be better than trying to make his own?

Now, given that all the kids in the state were out of school the mall was the expected madness. He did great though. Had a minor incident in the play area but really took it in stride. We walked happily all the way across the mall to Build a Bear where we found ourselves confronted with something near every human has trouble dealing with: gaggles of giddy kids. It looked like a little girl was having her party and while she and her friends were having a grand time, as they should, J was ready initially to just be done with the place before even stepping in. The allure of stuffed creatures proved strong however and I got him inside.

Build a Bear has many critters for its customers to choose from, from bears to bunnies to cats and then some. I pointed out different bears, different cats, different dogs, different horses… I showed him some wearing clothes and some that were not. I showed him pretty much everything in the store and he showed very little interest. The busy factor was making it hard to focus after all… Until he saw the blue teddy bear.

“Blue bear! Blue bear! Blue bear!”, came the giddy cries.

“You want Blue Bear?” I asked, picking up the then unstuffed blue bear to show him. “Are you sure you do not want red, or brown?”

I carefully showed him the other options slowly one last time. He was unmoved. It was going to be Blue Bear or it was going to be nothing. Fine by me!

He waited patiently in line to stuff the bear. He handed his bear to the woman working the machine, which sounded like a blow dryer chewing rocks and he braved like a true trooper. She asked him “Soft, or hard?” in terms of how much fluff to go in the bear, demonstrating how each felt.

“Hard!” he answered. She smiled, and stuffed the bear according to his answer.

He picked a small satiny heart out of a bin and placed it within his bear, then watched with fascination as the lady neatly tied up his back and finished him off. “Wow,” he said, eyes wide as he beheld his new friend.

He was giddy. I was near tears. We looked around a little longer and then went to pay for our new family member…

… And me, being the genius that I am, had left my wallet in the car. I had taken it out of my bag to pay for gas on the way over, and had not put it back. This would be a terrible situation no matter what your child is dealing with. You try to tell an almost 4-year-old that the toy you just helped them lovingly choose and make has to stay in the store while you run across the mall and back out to the car for your wallet.

The ladies were amazing. They spoke warmly and directly to J and reassured him that his bear would be right there, awaiting him. That when we came back he could have him right away. I was so embarrassed but so grateful… and he and I dashed through the mall like our rear’s were on fire. When we hit the door to go to the car, the tears began.

“Blue bear, blue bear…,” he wailed pitifully.

Talk about feeling one inch tall.

However, all was made well when he realized we were turning RIGHT around to go back in and commence Operation Bear Retrieval! The moment I had paid he took blue bear from the box, wrapped him in his arms and has been besties with him ever since. When I ask him who he is hugging, he usually answers “Ted E. Bear” (said with that sort of inflection to it, rather than teddy bear) or “Jacob’s Ted E. Bear”.

Just to reassure that Miss Kitty has not been cast aside, here is the current group shot of the cast of characters that I might as well call my other kids, since I am always hauling one or more of this gang out and about with us:

the gang

clockwise from upper left: Chica (from the Sprout channel morning show), Ellie the Elephant, Ted, tiny Chica (don’t ask) and of course Madame herself, Miss Kitty

Gratitude

Something I said today to J’s speech therapist was “It’s amazing how people can manage to be ungrateful for what they have”.

I suppose we are all guilty of this. No, wait. I am willing to bet a princely sum that at times, we’ve definitely all had moments of this.

It was just a casual conversation I was overhearing while waiting for J’s appointment to start, a parent of a child J’s age being displeased that her son “talked like a baby” and constantly demanding he “stop using a baby voice”. Here I was, witnessing this, and from my side of the room all I saw were two boys of similar age, hers and my own, playing and being silly as small children do yet one was being told to speak more maturely.

Now, granted, apparently this little boy “can talk like a 20-year-old” but whatever. At that moment, he was being his age.

It hurt me, right in the heart. I wanted to take J away and hide forever from people like that. I wish I could have sheltered that little boy too. It’s cute and all when small children speak like little adults, don’t mistake me, but being demanded to do so is tough. It was the attitude being displayed that hurt the most though. It rang to me like me being smug about my son running while another mother sitting across from me wished, day and night, for her child to walk.

Yes, I know J talks. I understand him better than most anyone else, after all. But that’s the thing. His words are hit or miss. If you are not in one of his favored places… There’s a very low chance you’re going to hear much. It’s just how it is. He is always encouraged, always praised, always given incentive but he’s not there yet and that is okay. He will always be encouraged and supported in terms of communication, however his preferred method of communication shakes out, but damn.

It was like a bucket of cold water to my face, having all the things I fear for my son sitting right in front of me: the judgemental people, the ignorant people, all of it, right there being sharp with their own child.

What a day.

Despite this, and after two days of pretty remarkable meltdowns, I took J to Cracker Barrel tonight after he said “pancake” when asked what he wanted for dinner. And he ate three bites of pancake, one with syrup. I know a lot of people won’t get the reason that’s a big deal, but it is. This child does not try food lightly yet he took actual bites of pancake (he’s had it before once at school) and willingly dipped it in maple syrup, then ate that too! He drank his milk, he sat in his chair, and he behaved wonderfully. Every time the waitress came over he pointed at her tray, then waited expectantly. He thought every time she came by she had more mysterious stuff for him! Ha!

So, a success to end this post on.

Rant Pants

Lately, I’ve felt very ranty on a lot of fronts. This is just one of the areas I’ve felt ranty on. If I remember more rants later, I’ll come back and add them to this post.  Why fill the whole blog with rants when I can consolidate them into one pile? Such efficiency.

Rant of the moment: “Curing” Autism

If a person born and raised in a foreign country with no concept of the culture, language and manner of where you lived were dropped on your doorstep for you to care for… Would you spend your time trying to “cure” them of the culture to which they were born?

No. You’d start finding ways to teach them how to function in the world which they now live, all the while learning to see the world through their eyes. At least, if you had a lick of compassion in you, that’s what you’d do.

So why are people out there trying to cure my son?! He’s not sick! This makes me angry beyond belief. A woman inferred that I was a terrible mother and torturing my son because I am not out there chasing down every snake oil salesman with a cheesy claim trying to “cure” my son. If my son has a clear medical problem I damned well will travel the ends of the earth trying to get him every bit of care and assistance he needs to if not cure the problem then to put it into remission enough that life can proceed in reasonable peace and comfort. Autism? It’s not on that list. Each day, I learn his culture as much as he learns mine. The next person who makes a move like this woman did is going to get an earful. I swear, the only thing that kept my tact in check was the board on which this occurred being otherwise a tremendous resource and the fact the direct thread was a mother searching for help and answers.

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Posts upcoming:

  • Working on an update to our J to Dog fundraising including making our Thirty ONEderful way to Ohio.
  • Meet Ted E. Bear, J’s latest bestie
  • A post of Anne’s choosing because she made a lovely donation to our journey!

 

 

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