J-Bear and Me

learning to navigate the world, j-bear style

Month: November 2013

Windswept Morningstars

This morning J and I had the pleasure of attending Morningstar Access at the Boston Children’s Museum. We had tried to go last month but life got in the way, which made me doubly determined to get there today.

Now, for those not in the Northeast, let me tell you how our morning started out: Monsoon. Heavy winds, pouring rains… it was a mess. A ridiculous mess. However, stalwart soldiers that we are, we went out in it anyway and drove the short distance from our home to the museum to attend the program.

Let me tell you, it was worth it. I’d do it again in a blizzard, in a monsoon, in a hail of frogs…. Whatever the weather was that day, I think J would shuffle on through it to get back to the Children’s Museum!

The wonder of this program is that it is a limited audience situation. The museum opens before regular hours, so that there are 2 hours families with children with special needs can enjoy with their children before the general public attends. Arriving at 8am seems daunting to not morning people yet, when you walk in to such a quiet, wide open museum it’s immediately worth the lost winks of sleep. The program is limited to 100 people, so pre-registration is required (it’s available at the link above). The cost is $7 per person, free if you are already a member of the museum.

And I’d pay the regular $14/person admission for this program.

There was nowhere in the museum apart from closed exhibits that we could not go. J explored everywhere, from the science experiments on the first level (a room full of bubbles AND a room full of ramps? Yes please!) to the Japanese House up on the third level where he fell in love with one of the museum staff. We played with construction trucks on play tables, we threw basketballs into hoops and we peddled a hand bike until it made enough energy to make a machine go. We caught shadow butterflies and we threw shadow marbles….

Seriously I didn’t know there even was this much at the Children’s Museum until we had the opportunity to truly¬†enjoy it today.

Future Morningstar Access dates:

December 26, 2013

January 20, 2014

All sessions are 8am-10am, though you can stay on after the museum opens. We elected to leave shortly after the public came in as J was hungry and donuts had to be procured.

Ketchup

So the weather is in a wild state of flux since yesterday, unseasonably warm and therfor setting off both J and I’s allergies like it’s going out of style. It makes things challenging to say the least.

Add to this that I am dealing with my own health stuff and I am like… “VACATION PLEASE”.

It’ll all pass, right? All the crap?

Anyway, J-bear continues to be amazing. Who would have thought this little boy who was terrified of swings and moving himself off platforms (stairs included) would be the king of trying to climb and jump off everything? The way this kid can move is incredible. Hopefully next year he can start dance or gymnastics or something to curtail that crazy into something constructive and less likely to leave him with broken bones because creating obstacle courses for himself in the living room is just destined to run up health care costs.

I know there is more stuff I should be writing or working on but you guys… Mama tired. So I’ll perk up soon and be back to bore the internet a little more! ūüėČ

Random J-Bear

In an effort to lighten things up, a conversation with J the other night begs to be shared. He was sitting watch a cartoon where one of the characters had just gotten a new puppy. The conversation went like this:

me: You’re going to get a dog too!

J: Dog!

me: What will you call your dog?

J: Chicken!

I was stunned at the answer but left it alone, carrying on with dinner making and such. A little while later I did ask him again what he’ll call his dog and got the answer of “chicken” again but have had no answers to the question since. We’ll revisit that in a few months but, future dog, if you end up named Chicken I am half sorry and half amused.

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There’s a lot of routine and even some could say ritual involving days with my little bear. We have our routines surrounding various things including getting ready for school, going out somewhere, what we do when we come home from school and so on. One of our little rituals of late reminds me of an awful episode he had long before he was I think even in early intervention. He was under 2 and just walking at this point at least and he had just lost his mind at the idea of getting immediately back into the car when we were at a store in Northborough. We needed to cross the parking lot, the long way, to get to the grocery store after picking up some little boy necessities at Babies R Us. He could not find calm at all so across the parking lot the long way we trekked.

Now, like most modern fancy parking lots there were landscaped areas that segregated out streets and what parking areas served what store or cluster of store. They have shrubs and trees and mulch and all that fun stuff. We had to walk across all of them in our path, this day. We also had to say hello to every tree and bush.

This brings me to today.

Every day, J stops to say hi to the tree in front of our house. He says hi to the trees at school sometimes, but he always says hi to the light pole and the flag pole. Now, this isn’t a case of him ignoring the people he passes, for he acknowledges them too even if not verbally, but it is a strict part of our routine to say “hi pole!” or “hi tree!” whenever we’re on our way to school.

You would think it would get old after the 750th time doing it but it never does. It’s his “thing”. It gives him peace. It doesn’t hurt a soul and it takes three seconds to do. As long as he doesn’t want to go greet every tree in White Mountain National Forest anytime soon I think we’re all good.

We’ll just be careful of Christmas tree sales for a while.

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Yesterday afer therapy we were driving home and pulling up to the last set of lights before we get home. All of a sudden from the back seat I hear “Oh no!”… which I think I have heard out of him maybe twice. I’m looking around, baffled because I could not immediately see what he was reacting to. Then I looked ahead, about a block up, and saw the 18 wheeler attempting a turn on residential streets no 18 wheeler should be attempting. He noticed it jumping the curb long before I did. We were safely quite far away and no one was hurt in this driver’s act of whatever he thought he was doing there but wow… I have to say I am pretty impressed little man caught that. I wasn’t even sure if that’s what he’d been reacting to but when I said “oh wow, the truck!” he said “oh no!” again.

He gets it. Even when we don’t.

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And that’s a little bit of our random daily life of late. Nothing too spectacular. He had a tummy bug last week, which stunk but hopefully we’ve seen the last of that. Still having a lot of bedtime struggles, namely keeping him asleep without him destroying my sleep, but there’s a bigger weighted blanket on the way that I hope will help. If not, it’s back to the drawing board.

I still have some small fundraising stuff to update about and I’m getting there, slowly but surely. Emphasis on slowly. I am, it seems, part snail these days.

A Letter to @AutismSpeaks

Dear Autism Speaks,

As the mother of a newly diagnosed child last year I was immediately referred to you. Some of the information you offer is sound, and some of the guides you offer were amazing in spelling things out for me I did not then understand. Immediately, however, I should have trusted my gut.

My son and all people with autism are not a group of people to be feared. They are a group of people to be loved; a group of people who do not deserve to have their humanity stripped away in the name of ‘raising money and awareness’ in a way that is hurtful and untrue to who and what they are.

The biggest thing we, as loved ones of people with autism and as citizens of the world, need to do is start building bridges of understanding, compassion, fairness and trust. The moment you remove humanity and reduce the struggle autistics go through to snippets of what is both their and most people’s most vulnerable and worst moments you demean your own cause to a point it begs the question what your real aim is.

Autism is not a disease. It is not cancer, polio, smallpox, malaria, diphtheria, chicken pox or the common cold. It is not something that should be spoken about in hushed, mournful tones. This generation and future generations to come should be as comfortable talking about autism as they are about discussing hair and eye color, for it is as much a part of their build as that.

This should be our promise to the current generations and those yet to come: We promise to give you the supports you need and the respect and dignity you deserve. It is our role as the guardian of the children being raised now with autism to give them security of self, something that will help them far more in the long run than any other single thing we could give them. If we teach them that their person; their voice is worthy and respected – no matter how they express it – then we’ll have already made this world far and away better.

We can do better. We are better. Stop demonizing autism. Open minds, open hearts and let the understanding begin so that healing can soon follow.

 

Sincerely,

Just one blogger out there in the world.

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It’s easy to preach, but hard to practice, right?

So there’s the challenge: I urge those who read this to practice understanding. I urge you to check out some amazing resources below and next time you see someone struggling in public or even in private, realize there might be something greater at play than you or I could ever guess at. Compassion pays itself forward with ease and you’d be amazed at the beauty it brings back into your life.

http://autisticadvocacy.org/

http://www.autism-society.org

http://musingsofanaspie.tumblr.com/post/66817542425/dont-let-autism-speaks-be-the-only-one-speaking-about

Random Life Stuff

Some days, I feel like I am a walking disclaimer for what life choices to not make or have made about you.

That’s where I am today.

I can’t even talk about the details without starting to cry but suffice to say I have a long road of some medical stuff to deal with ahead. None of it is crazy life threatening, so I’ll be around to annoy everyone a little longer, I’ll just be more crabby while I do it.

Anyway, so here I am, staring at a screen unsure what to write.

A post on Diary of a Mom has my brain spinning its gears as I digest all that was written. I find myself agreeing with most if not all of it, that demonizing and stigmatizing people with autism is just the wrong way to go about raising awareness, raising money, or anything to do with forwarding the cause of giving the autism community the resources they need within easy reach. This probably deserves its own post though so consider this a preview or a warning of things to come depending on your viewpoint.

Last week, what is referred to as a “special needs dog” became available through 4 Paws. Now, though they are labelled thus, let’s make it clear what the story is with most of the pups noted as this: They have had a medical issue (joint issue, allergy issue, etc.) or random minor behavioral issue that while proving minorly impactful to their serving life is not enough to remove them from being an amazing service dog for the right someone. Sometimes this precludes them from certain tasks, like tracking (which we need), or mobility assistance, or what have you. It’s just something that requires more committment on the part of the family receiving the dog should it be a match.

Anyway, sap that I am, of course I jumped at it. The soft spot in my heart for the underdogs (no pun intended) is a mile wide. I can handle a little extra weird in my life if it means care, comfort and safety for my son.

Alas, the dog is not meant to be ours. We still have October though.

It’s kind of good though, cause getting out there in January would have meant me pretty much alienating all of you in a short time with begging for help to get us out there so fast. Now, at least, we have months to plan and save and I only ¬†have to beg and cry at you guys a little.

That’s okay, right?

Yet another thing I have to write more about later. I need my days to be longer and my to do lists shorter.

The Spectrum

I saw a graphic on Tumblr tonight and I have to say, it bothered me.

It likely bothered me more than it should.

I went back and forth about posting it here but here it is, because I am hoping this can teach people how autism¬†isn’t:

offendingspectrum

 

Take a moment to really study that.

This is such an insult to all people’s intelligence. It’s an insult to those who are autistic, because how much more pigeon-holed could they be going by this chart? This doesn’t show a spectrum, it shows an ugly, untrue line of bad stereotyping.

There is a piece of paper in my possession that says J has “classic autism”, those words on the far right of the “spectrum” up there. Yet not one week ago his teacher was telling me how he just soaks up learning like a dry sponge soaks up water. He learns constantly and voraciously, both in typical and atypical manners. What a huge disservice I would feel done unto him if I were to find his classroom professionals followed the chart above.

These children, adolescents and adults carve their own paths… just like their peers. They do it in their own way, in their own time, and it is starting to really bother me that the pressure is there to “train” my son to be “normal”. What is wrong with J being J? I love J being J, even when he’s challenging me to my utter last straw! I appreciate the tenets of Applied Behavioral Analysis, for example, but I appreciate the focus on the individual and their needs more. Above all else, my son needs to learn that being himself is above all, first and foremost, important and good. He needs to know that at least within the walls of his own home, apologizing for being himself is not going to be necessary.

So I will do my best not to mention autism when we are out. I will stand back and let him learn, whenever it is safe for him to do so, how he needs to cope with things. I will be his handhold when the world gets overwhelming, but I will not shackle him to a diagnosis that is just a definition of part of who he is. It’s as much a part of him as his eye and hair color, as his voice and his laughter, and I have to learn as his mother how to be the most supportive person I can be for him in a world that is not always going to understand.

This is why wandering the internet is scary, folks. You wander general parenting sites, where everyone can be so very holier than though. You wander special needs parenting sites, that can be either extremely supportive or extremely engaged in the Pain Olympics (note: Everyone loses when engaging in these. Pain isn’t a competitive sport). You wander into the autism specific sites, and get hammered from both sides. And then you find the smaller, more intimate communities and realize there are people who will listen, from all sides, and who will have discourse.

Man am I thankful for Diary of a Mom, 4 Paws for Ability and my June 2010 parenting group for showing me there can be sane groups of parents who don’t have to be fully like-minded to show respect and understanding to one another while helping each other through the hard stuff.

Cling Like Static

J-bear has got the ick. This is all the details on his illness anyone could ever need because… yeah. It’s one of¬†those plagues.

When he feels ill, he becomes the Incredible Clinging Monster. I should have known by how lovey dovey he was this morning that something was potentially soon to be off. This was my warning shot and I missed it completely. However, it could be worse. He’s been known to be absolutely unbearably whiny during illnesses too… The clingy version of him is way, way better.

You see, all he wants is to be in contact with me. He wants hugs, he wants kisses, he wants to be on my lap, he wants to be by my side… And I better not even think about being in a different room! There he is, my unhappy little shadow puttering along after me with the saddest eyes anyone has ever seen.

Have you seen my son? Have you caught a glimpse of those killer grey eyes?

Yeah I fall to pieces on sight of that look every single time.

He came home from school, attempted lunch, was ill and I took him to lay him down for a nap. He whimpered the entire time he was falling asleep until the pressure from both his weighted lap blanket and being bodily embraced allowed him the ability to relax and sleep. I love that I can be such a comfort to my son but I have a possibly terrible confession to make: It’s exhausting. ¬†He touches my face a lot, which sends my stress levels through the roof because reasons. But it’s¬†his comfort; his stim when he’s in need of rest, reassurance or relaxation. When the two things are weighed – his need for comfort versus my stress at having my face pawed at – his need forever wins.

Even when I want to crawl the walls at being woken up to a toddler hand smooshing my entire face.

So yes, right now little bear is not well, and right now he is a thousand times more clingy than usual, which makes for a tired mama and long days. This too shall pass, right?

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If you have the time please check out this post right here about Elmo and Lyssa. They could use our help and support if you have any to give and I would be greatly appreciative to those of you who can share it around!

A Dog Named Elmo

There’s a member of the 4 Paws for Ability family who could use our help. If you could donate, or share this story, I would dearly appreciate it.

http://www.gofundme.com/4vzmmk

This link will take you to a donation page for the family of Lyssa and Elmo. Elmo is a service dog trained by 4 Paws for Ability to work for his girl, Lyssa, as a seizure alert dog. This is an important part of young Lyssa’s life, but her beloved Elmo is now so sick he is being fed by a tube 4 times a day and is in the animal hospital tonight due to vomitting blood. The bond between dog and child is rare and precious, something these two have enjoyed and it is now threatened. The need for Lyssa to have a seizure alert dog is so great that 4 Paws has already placed she and her family in the June 2014 class to give her another dog to work where Elmo cannot.

Meanwhile, Elmo’s illness is desperate. Costs are mounting and, most heartbreakingly, Lyssa is without her dog and Elmo is without his girl.

They need our ¬†help. Please share their story. Let’s get them donations to help with Elmo’s care and with getting Lyssa and her family to Ohio to receive another dog this June. These dogs become a part of their children, and we cannot leave a one of them behind.

Thank you all!

Weird-iversary

Taking a break from talking about autism, service dogs, 4 Paws and fundraising here. It should be a given that most of my posts will be rambly at this point and this one is no exception.

25 years ago today my father and my first stepmother got custody of my brothers and I. It’s a strange kind of anniversary to think about.

There will always be a lot of “what if”s that surround my childhood. This is one of the glaring ones. The day my father got custody should have struck fear into my ten-year-old heart that a rough life was going to turn into a life that was just as rough if not worse but that’s not a natural way for a child so young to think. My father, stepmother and her family mocked our world mercilessly and made us feel less than human in those first hours that we were to become a “family”.

When I was a child I always thought my father would somehow “get better”. I had been seeing his worst since my earliest memories and yet, when you’re a child you hold out hope. You believe fairy tales exist and that somehow, you’ll get to a point where you have the loving sort of family other people say exists. That never happened, for us. Things never changed, no matter how much there were times we were fooled that it might. They got worse, they levelled off, then they’d get worse again… Life was a constant round about of abuse then peace then abuse then peace.*

My first stepmother… Wow. If this woman is still out there, I sincerely hope she is disallowed somehow from having contact with children. Every single day for years she made it a point to remind me how awful I was, how useless, how fat, how ugly, how pathetic, how I’d grow up to be old and alone. She shamed me because of my body, because of growing up, because of so many things no human being deserved to be shame over. With 20+ years perspective on all of these actions on her part I can see she was just taking out her probable self loathing on me. It was still nothing any child ever deserved.

And my father saw no problem with bring women that were bad for all three of us into our lives. We were annoying accessories.

And this was my childhood. And 25 years ago set the stage for so many struggles. I will always wonder… what if, what if, what if. I cannot change the past, but I am human. I will always wonder.

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*= Not all of my childhood was terrible. I had two wonderful grandmothers, even though one left my life through no fault of her own long before she should have. I had the wonderful parents of my bestest friend and other adults who stepped up where the people who should have cared for me most failed. By the grace of God I got two women who came into my life who suffered my father but who were always true and honest to me. I had some amazing friends, and their families too. Nothing is every completely terrible.

The comments are not turned off because I do not love my readers but because this is pretty vastly personal. If you feel the need to reach me hit me up at mamabear@jbearandme.com.

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