J-Bear and Me

learning to navigate the world, j-bear style

Month: March 2015

Time for Acceptance

The journey from the moment J was diagnosed with autism to today has been filled with curves, hills and detours. We have only been aware of his autism for two and a half years. We have so many years left of exploring, learning and growing yet to do. The approach of April heralds a lot of people talking about autism. This is good. The world should know about autism and learn to understand what it means, right?

Sadly, it does not always read that way.

There’s puzzle pieces everywhere, a symbol that reads like people like my son are something to be solved; to be fixed. There is this commercial push towards blue because one organization deemed that to be the color for autism. There’s a lot of voices trying to talk over one another and yet, the most important voices of all are often looked over. The voices of autistic adults and teenagers are of essential value to the generations that will come after and yet, here we have this month that seems to forget their very existence.

My son is not a puzzle. He is a work of art created in a different style. He has every piece he is supposed to have, perfectly fitted in the order they were meant to fit to make him uniquely him. I said in his IEP meeting last week when we discussed some of his language development that when he was born, he threw out the map. He did. He has charted his own course from the first and that course shows such beauty and promise. It will not be typical. It will not be easy. It will not be what anyone expects and yet, it will be exquisite and amazing to behold.

This April, I ask you to consider the voices of those who know autism best. I ask you to listen to what they have to say, see the contributions they are making to their world and most of all, to give them the respect they deserve. You can find some great autistic voices at the links below:

The Autism Self Advocacy Network

Chloe Rothschild

Conquer for Conner 

Videos by Amythest Schaber

Nathan Selove

If anyone has additional links they want to share, please let me know, I’m always up for more reading and know there are lots more out there.

15 Years

Our mornings began as dawn was barely breaking over the beach near her house. I always had to creep in for worry of waking the house though looking back, I wonder why. She was always awake when I arrived. Sleep was a fickle friend to her, often eluding her at night but taking her by surprise during the day. Her body was weary but her mind, that never tired.

“Good morning, pumpkin,” she would say, speaking just loud enough to be heard. The words were so soft but always rich with warmth and love.

“Good morning, Nana,” I would answer, quietly too so as not to wake my very tired uncle. He held down the overnights and I held down the weekdays, you see. This was how she was able to remain comfortable in her own home.

nananna

Nana Anna and Papa David on their wedding day.

This was how every day began for two months. They were two long, difficult, scary, funny and incredible months. They were two months I wish I could have back to live again and again, no matter how scary they got.

You see, Nana had cancer. It was in her liver. She was diagnosed in early 1999 and rather than aggressively attack the cancer, she considered her life and the quality thereof. She elected to simply live. She was 77 when she was diagnosed and her doctor estimated she would have about a year from that point. He was almost spot on with that estimation. She travelled, going to Ireland a last time to spend time with family there. She spent time with her family here. She simply enjoyed her time and when the cancer began to take pieces of her freedom away, a lot of her family came together to make it possible for her to live at home in comfort until the inevitable came.

And of course, it did.

I was not there when she passed. I could have been, I imagine, but that did not seem her wish. She shielded me a lot. The worst of her symptoms would come at night. My poor uncle saw the worst, her own son, yet during the day somehow it never appeared. She would not tell me the worst of what she felt. The worst I would see would be how awful the medication she needed to function made her feel, for she would cringe. We instead passed our days peacefully, sharing laughter and simply enjoying each other’s company between visits from nurses, health aides, friends and family. She did not pass away until after I left very late on the 19th, having I imagine finally found her peace. She knew the love of her life, who she waited over fifty years to see again, was waiting for her when she got to the other side.

There she rests now. I cannot visit her grave easily but it is a comfort to know she’s there with him, my grandfather, and at peace.

goofy

This is 100% a Nana Anna “I am up to no good just watch me” face.

It was 10 years after her passing that I could see her again. Her great-grandson was born with her smile. It was clear from his first day. As he has grown, J has developed her keen sense of mischief and her intensely hilarious inability to be subtle about it. He, like his great-nana, broadcasts everything he’s about to do. He has a face like glass and so did she. He has the gorgeous shape of her eyes and their beauty, but not their color. Oh no. The color is all his own, a bit of her aquamarine-ish green and my mother’s family’s blue shaken down into a startlingly pretty grey shade.

I tell him about his great nana. I tell him about her a lot. He would have loved her, as he loves his Grammie down in Virginia. Their gentle and patient natures are the perfect match for his needs. I wish he could have met Nana but that’s now how things were meant to be. Instead, she and Papa will watch over him as I hope they watch over me. I’d love to say that in the course of so many years the missing fades or hurts less but that’d be a lie. Death does not heal. It transforms those it leaves behind. You aren’t who you were before it happened… Grief is a journey that changes you. You learn to live with this part of you missing, never to return. The only way to get that part back would be to never have known the one you loved and lost it for. That’s not a price many are willing to pay, I would hope.

I love and miss you, Nana Anna. I still see you everywhere and for that, I am glad. Keep an eye on J for me and even though I know you were never too fond of animals, I know you too would have loved Brooklyn. Send a sunbeam to warm us when you can.

Dear Medical Staff

This is for you, the techs, the nurses and the support staff in medical offices and hospitals. I need you to understand something.

Compassion is what will save both sides a lot of stress.

Hear me out, please?

Yesterday, I spent the day in an emergency room. Again. This seems to be an almost yearly event and thankfully despite a very long day yesterday I actually have an answer as to why I keep having such similar problems year after year. This is good. Great, even. The visit sadly highlighted something else that needs even greater attention than what brought me to the ER.

I have bad veins. It’s a well noted fact, I have always and forever been a tough stick. There have been a few blessed phlebotomists who have quickly and relatively painlessly drawn blood or placed IVs on me but more often than not I leave situations like this appearing like I can barely retain water due to so many holes. It’s a mess. Fifteen years ago a particularly uncaring tech decided to dig around in my wrists for veins despite my protests. She rendered me unable to use my hands for several days, the pain was so great. I could not brush my hair. I could not do simple things for myself. It was upsetting that I was disregarded and rendered what felt like injured for so long and has stuck with me ever since.

Now, enter yesterday. A tall man my age or maybe a little younger approaches me. He’s with the IV team. He’s there to place an IV for fluids and blood draws. I submit to his efforts, already in pain hence my being in the ER to begin with. I ask what I always ask: Please avoid my hands if possible. I need to be able to function after all. He outright ignores me with a huff. Three sticks later, he goes for my wrist. I screamed. He cleaned up his stuff and huffed out of there declaring me impossible to stick.

I sat there and sobbed. A kind woman who works in the lobby brought me tissues.

This is for that fella, who later came back when I consented to do one last try for an IV and mocked me openly because I screamed:

You don’t know what PTSD is like. Your disregard for my simple request kicked off terror. You cannot help that you’re male and sadly, I cannot help the reaction of terror I had so acutely at your actions. If you had talked to me, treated me like a human being you would have known this. The ultrasound tech did just this and had me at ease and chatting amiably all through my test despite the fact I am usually wildly uncomfortable with strangers touching me.

You never took the single solitary moment to realize that most people aren’t drama queens, they react as they react for reasons. If it had been my son in your care, he would have done all I did and more because you’re a stranger touching him and not only are you touching him, you’re doing something he doesn’t entirely understand and it hurts! It’s a rare child that doesn’t freak out over needles, after all, and he is no different… there is just little to bring him back from that horror besides his dog right now. I cannot imagine the ugly things you’d have said about that, probably blowing off the fact he’d hear every word and understand you.

Just like I did.

Talk to your patients. Set them at ease. Show them care and understanding. It changes everything. There are nurses in that very hospital who I let one night spend the entire evening trying to get an IV in me for a test. I was covered in medical tape and holes, but they succeeded and even though it hurt and I was miserable, I could smile and laugh about it. Why? Because they all approached it with understanding, respect and when they realized humor helps me, humor. When you’re a good sport it really helps the person you’re working with be the same.

The funny little epilogue to this rant is that not ten minutes after this person left me declaring me impossible a young lady came along, got a blood draw done on me rapid fire and I never ended up needing an IV. Still got a diagnosis, still got taken care of, still survived to tell the tale.

Odds and Ends

So, mama apparently forgets to write. Here’s some miscellany since when last I sat down and updated here.

The end of January started what I believe is the snowiest 30 days in Boston’s history. Seriously we were/are buried. It just kept coming, storm after storm dropping a foot or more and our town was more than negligent in cleaning up after each hit. J gets uncomfortable when just a smidge of snow gets visibly on his shoes, forget having to hoof through snow that was up to his forehead or higher. He did not play in it, he’s still only now coming around to touching or stomping on some of it. It was hard on all of us, especially he and Brooklyn. Hopefully now the weather will slowly improve into a beautiful spring and this boy and his dog can get outside and enjoy the world as they love to do.

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Language has been the biggest change in J in the past months. He is saying a lot of purposeful phrases and incorporating new scripts into his day-to-day life. There’s a lot more “I don’t know!” rather than “NO!” in answer to questions and more importantly, his listening and being able to follow directions is continuing to blossom. He says some great sentences now, none of which I can think of off the top of my head of course, and is very warm and engaging to familiar people. His biggest communicative challenge continues to be extending those skills to people outside his familiar circle but that’s what Brooklyn is there for. She brings the people, he can learn to share his charm with her supporting him.

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Speaking of Brooklyn, we had out first and hopefully only major fail season. This weather combined with dietary and timing factors led to some embarrassing situations in two different stores. The uptick of this situation is that I believe I am now an expert pit crew. The downside to these situation is that people are not understanding or kind. The staff at 4 Paws for Ability is fantastic though, one of the head trainers talked me through a few strategies and along with fabulous advice from a dog food expert we seem to have Brookie B handling things a lot better. As the weather warms I am looking forward to more excursions to work on her skills in public. She is fully trained already, mind you, it is our job now to keep her fresh and ready for whatever J may need of her.

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J’s birthday is in June and he will be a big 5 years old. Our boy, he is so blessed in terms of clothes and toys. He has everything a little boy could ask for plus a dog. This year, our goal is to make his birthday about giving back. Sure, we will do our usual fun traditions on his birthday but we also would like to fundraise in his name to sponsor a training class at 4 Paws for Ability. Sponsoring a class means you fund their refreshments during training, their training materials and their graduation goodies. Our class was sponsored by one of the area universities and they spoiled us rotten.

Watch this space for further details. Maybe we’ll even be able to sponsor more than one class, time will tell!

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