J-Bear and Me

learning to navigate the world, j-bear style

Month: April 2014

The Process of Communication

Here is a brief history of the past year to eighteen months of J’s life in terms of his communication:

When J was evaluated for autism in early 2013, he had barely any words at all. He had maybe a handful of signs, but a lot of his interaction with the world was not very communicative. His basic needs were met because those around him most knew he needed to eat, to drink, to be changed, to be clean, to be comforted and so on based on just knowing his routine and relying on that. We could learn what he preferred and did not prefer by his reactions, but there was very little purposeful communication whatsoever.

Early Intervention as well as intensive occupational and speech therapy began to eye the wall that was the barrier between J and the world at large in terms of purposeful communication* and started finding ways for him to find ways to get his message around said wall. We used sign. We used pictures, and still do use pictures. There was a lot of the people around him, especially me, constantly talking and constantly narrating and constantly employing language and communication in every manner we could while allowing him his time to get a foothold with it.

There was no hurry. We were still getting basic needs met and even occasional wants. It was not great, but it was functional, and we could get by understanding that all things will come in his time.

This is why that was so important.

From this past September to now, the gains in practical language have been fantastic to behold. It’s like he climbed halfway up the wall and takes great pride in hanging out looking over it. He loves to point and label things now and manages to surprise me with all the things he knows the name of. It’s a lot like listening to someone who is learning English as a second language as when he does not know the way to explain what he wants to say, he relies on a round about way of saying it. An example of this is when he saw a colorfully painted artistic representation of a gear, he announced “cake!” because it fell more in with how he sees cake and he did not know the name of what it truly was. It’s incredible to behold, really, for it challenges you to see the world you take for granted in a totally different light.

We still rely on pictures for communicating an idea of where we are going and what we might be doing when it’s time to try new things. They are a lifesaver for us, but he is using few picture cards to show people what he wants. He has on his own decided words are useful. This works for him, and if down the road he decides that written word is even easier, then we’ll cross that bridge then. I know I find written word far easier than spoken word so I would not be surprised or shocked by him turning out to be similar.

Then again, he’s such a little social creature sometimes that I can see him being completely addicted to chattering away.

I think the biggest change that has come with his language explosion is how he scripts. Last year, his scripting was barely decipherable. I could guess at what some of them were by just the cadence of the syllables and the one or maybe two half formed words that would filter through. He knew, obviously, just what was playing out in his mind’s eye, but it took me a lot longer and I was around him the most. Now, they’re far easier to discern and feature more than just what he might have seen in a familiar cartoon. I hear snippets of his school routine, or his home routine, or little scenarios he’s made up combining several of his favorite things. His imagination is starting to blossom which is terribly exciting all around. I know the way his mind works is remarkable (not that I am biased, right?) and I am eager for the world to see it.

A lot of this growth is limited to home, school and his therapy center. However, this is how he grows his skills. He will get completely confident in his safe places and he will branch out on his own. I have no fear that he’ll be chatting anyone who will listen’s ear off when the time comes, and have all the patience in the world about him getting there. One day, he’ll sit atop the wall that represents the barrier in communication between him and the outside world and he’ll grin like a fool, knowing he’s got it conquered.

That’s going to be a beautiful day, and I am so glad and amazed and awed and proud of the progress he has made. I am forever indebted to the teachers and therapists who have helped him to get here, and who have believed in him as much as I have, knowing he’d sort his way out and work his way along when he was read.

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*purposeful communication= There is still a lot in J’s speech that can just be jargon. They’re muddled sounds that could be words but only are said within his scripts. This has been the case since before he entered Early Intervention in early 2012 only now, it’s diminishing in prevalence. It once was 90%+ of what he would say, now I would guess it at maybe 30%-40%.  I do not dissuade him from his scripts for they, like his other stims, serve an important purpose to him. The sounds/muddled words can stay as long as they are required.

Food Fight

The term takes on an entirely different meaning when you have a child with autism or sensory issues.

J has decided that food is not for him any longer and it is a war to get him to drink more than milk and eat more than chocolate munchkins.

This isn’t like with most children though. Most children will eventually get hungry enough to go on to something else to eat. J however will refuse food and drink that is NOT preferred to the point of causing himself harm. He will dehydrate. He will remain hungry. Milk gives him sustenance but it’s obviously not enough. I say this not only as his mother but as a child who was seriously picky with food – I would refuse a lot of foods but eventually hunger would win out and I would figure out some way or another to eat at least a part of what I was offered. He’ll just cheerfully go without as though unphased as I hear his stomach rumble two rooms away.

I’ve tried vitamins with him before to little success. They caused him digestive troubles and it seemed counterintuitive to give him something for his health that was actually making him feel miserable.

There are some feeding techniques I am aware of and as he returns to school post April vacation I hope to start implementing them as part of a more strict routine. The break has caused other disruptions in progress and behavior, as all major changes in routine do, but this eating business is what has me the most stressed.

I blog about it mostly because whenever I tell the world about a struggle he’s having he gets a bat signal about it and has to show me up shortly thereafter by doing exactly what it was I was saying he wasn’t doing. I am hoping this pattern continues and tomorrow he eats like a ravenous wild animal of everything that I offer to him.

I can dream, right?

Tragedies

I get very almost irrationally upset when autism is referred to as a tragedy. I cannot decide if this makes me a jerk or what, and I am coming to the conclusion that there will always be people who assume I am indeed a jerk and likely also conclude I am a terrible parent but I will never, for anything, treat autism this way.

Losing someone before they’ve even begun to live, even had a chance to tell their story… That is a tragedy.

Senseless violence scarring bodies, hearts and minds… That is a tragedy.

Anger, ignorance and blind hatred destroying lives… That is a tragedy.

Autism is not on that list.

How do I raise a child to be whole and confident if I act as though a very important facet of who and what he is is a harrowing thing? My son was not lost in the day he was diagnosed, he and those who love him were handed the terms we needed to start learning the way he operates. This is going to sound like a strange way to describe it, but we were given a gift: We were given the way to get through to J. We were given a path to take, the name of what we needed to study and understand, so that we could learn to make an inclusive world for him both within the sphere of his influence and outside of that.

It is not a sunshine and rainbows path. It is not easy but then again, what life is? We struggle, we fail, we get back up again and we keep going. There are days that are so frustrating that I wonder if I am the absolute wrong person to be on this journey with him, I cannot deny that. I feel weak, and stupid, and lacking in every trait he absolutely needs the most of me. I have no trust in myself, no belief in myself, yet that is when he clings to my side the most. He believes, even when I don’t, just as I believe in him even when he doesn’t.

The most important thing is that we keep getting that opportunity to fall down flat on our faces and get right back up again. When we get those moments to rise anew, I am reminded, it’s just autism and it is going to be just fine. A life lived differently is still, in fact, a life being lived and if someone else wants to throw away that fact and consider life a tragedy, that has to lay at their door. It cannot be something that lays at mine.

J has a long, beautiful future ahead of him. It will not be without struggle and accommodation but one day he’ll be fully in charge of telling this tale. It’s my job to help him get to that point and to be there in the background nudging him onwards still once he does.

There are no tragedies here, only boundless hope and a deep eagerness for what the future might hold no matter what struggles lay between here and there.

Life with J: A Video

There is nothing J loves more to eat than chocolate donut holes (munchkins) from Dunkin Donuts.

Here he is with his favorite snack, rocking out to music playing in the Dunkin Donuts we were at:

J-bear runs on Dunkin.

The Mayor

Have you met my son, the mayor?

He must have learned something from my friend and former co-worker Garrett for he’s really starting to become the little man about school, about his therapy center and about anywhere he’s familiar with. He has abruptly become all about people and it is both amazing and shocking – amazing for how happy it makes him and shocking for how stark a change this is from the little boy who entered Early Intervention two years ago.

This is what keeps me going, after all. I may have some pretty strong beliefs about all the wonderful things that are there in my son, but I am well aware that most of them aren’t always seen by the world at large. The biggest job undertaken since he entered Early Intervention and now since he has entered school has been to open that all up…

Well, I am proud to say that the doors are opening. Fast.

I have always called him my sunshine boy. He has always had this tremendous personality and a smile that could lift the heaviest heart, if even for a moment. When you combine that with his empathetic nature it makes for quite the compelling little man. Now, let’s layer some sincerely comedic timing and silly mannerisms and there you have it, my J-bear all neatly summed up. He adores making people smile and laugh. He loves initiating social games with the people he knows. The way he speaks is still quirky and sometimes hard for people who aren’t with him daily to understand but he never gives up on it – he persists til whoever he means to convey something to gets it.

The boy he is becoming blows me away. I want to keep fostering these caring, thoughtful, social, silly, wonderful traits that are emerging while letting him know that the days he isn’t so sweet are okay as long as he doesn’t stay there. I want him to forever know that even the best of people have off days. It is okay to be frustrated, to be mad, to be sad, to be however you feel but to not be unproductive with it. Feel it, work through it and do what you need to be better later – within reason of course.

I want to keep seeing him be the mayor. I want everyone we interact with regularly to continue to look forward to seeing him and what he’s up to. I want to see all of this social behavior just plain explode and flourish when he and his dog team up in October. Just stand back and imagine the power of one charming little boy and his equally charming sidekick/service dog…. Man. I really think they stand a good chance at changing the world, even if it’s just the world immediately outside our door.

I think I am going to like continuing to work for this little mayor.

Mama Unwinds

Well, I try to.

The latest thing I have begun doing in a desperate attempt at respite is playing video games. I know, dorky, right? But it’s mindlessly fun. I was initially playing an older game off and on but found the crowd there increasingly strange, so I went back to World of Warcraft.

This is a game I have not played since I was pregnant with J. I am pleasantly surprised to report that it has grown infinitely more fun in the years I was away!

You see, when I would play it what feels like forever ago, I would play it with someone I thought was a friend, someone I thought I trusted and could have fun with. A lot happened during game play that should have opened my eyes to the truth of this person. They would grow hostile, abusive and extremely volatile… over a game.

It was like dealing with my father. It was bizarre. I should have paid attention but I did not, and I eventually paid the price for dealing with this person. They are the one person banned from this blog, and truly black in their heart and soul. Pretty sad.

All of those experiences made me think I was daft in going back but I did, cautiously, and I am honestly glad I retried this silly thing. An acquaintance set me up with a guild so I wouldn’t be bombarded with weirdos any more than necessary and I can play whenever I want and plug along in my own clumsy, ineffective way. No one mocks me, no one harasses me, above all no one has a hissy fit at me over a video game… Best of all, if J is being particularly feisty I can sit him down beside me and we can chase animals together. He’s always happy to do “running” as he calls it.

Has my geek-ness gone off the charts? It feels weird to have one little thing that is just… kind of mindless, but it is sorely, sorely needed. Sleep has been a terrible battle of late more on my side than J’s, the ever-changing weather has led to more meltdowns that need to be contended with, it’s IEP season, and there’s just a lot going on that causes stress, which causes anxiety, which causes the intense desire to hide in a hole until it blows over.

It is tempting, that hole, but I remain above ground for now. Now to find myself more energy and get more projects done. The more projects I get done, the more time I can have to flail around playing a video game, right?

It’s all about the carrot at the end of the stick some days.

Odds and Ends

For those just joining us this evening, there is a fundraiser you can find information on here: http://www.jbearandme.com/fundraising-with-thirty-one/ — It’s a Thirty-One party and 20% of all the sales go to Operation J to Dog. The party ends April 24th!

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J actually missed school today because of, get this, an extreme aversion to pants.

Don’t we all have these days? Today just happened to be his.

Pants eventually did happen, but it was a tough day. There really does seem to be a pattern developing between unsettled weather and J having a more difficult time coping with things that otherwise are not an issue. I am hoping that this passes as the weather passes but it remains to be seen.

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Progress is the name of the game for J of late. Listening to how his language is developing is quite simply fascinating. He is communicating, with people he is comfortable with, in his own way and in his own time. He mimics like a pro of late, and he uses what language he does know to try to make his wants and needs known. “Get out!” when I am not turning into the parking lot he wished me to, “Push!” when he wishes me to be in a different lane while driving, “Hop on!” to demand me join him on the bus (LOVED this one)…. Lots of little phrases and mega personality.

Today he met several babies when we were out and about and he was so curious and actually initiated teaching one small girl how to take turns! This is huge, both for his communication struggles and for the fact… he’s not even four, and what child of that age group is an expert in sharing?! I was blown out of the water and proud. He can be a bear when he wants but at heart, my son is so very sweet, caring and gentle. It amazes me. He has a lot of cards in his past that pull towards a manner very opposite that and he’s proving he can overcome genetic predisposition in that regard.

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There are days I worry about the service dog decision. I wonder if I am overstating need and so on, because a brain on an anxiety disorder is frankly a jerk and loves to create doubts and fears. This past week it has occurred to me that the dog could provide something huge for J I had not anticipated and that is a constant to allow for him to better generalize his skills. The dog can be everywhere with him, and provided that others will be willing to be consistent handlers, he or she can go where I will not be. This is tremendous for J. It will help him carry skills that only occur in specific locations with specific people translate to other places and folks. It will be the invitation for him to open more doors and leave them open, sharing himself with the world at large.

That is so very exciting! I do want the world to see what a hilarious and engaging child he is when he’s with those who know him best. He’s trying to be it everywhere, but something gets lost in translation. It can be yet another thing his dog can help with.

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Opened with fundraising now ending with fundraising: Mid to late May we might do an iPad Mini raffle. Details will follow about how to purchase tickets and the date of the drawing. Hopefully this can be our biggest fundraiser to get J to his dog in October!

Fundraising with Thirty-One!

Our current fundraising for Operation J to Dog stands at $250.

Let’s blow that out of the water!

I am hosting a fundraising party through my Thirty-One business! You can check it out here: https://www.mythirtyone.com/shop/catalog.aspx?eventId=E4431134&from=DIRECTLINK

This April, you can get the All Pro Tote or the All Pro Duffle for $25 with every $35 spent!

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they are indeed as awesome as they look!

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check out all the fancy colors!

Now, the straps are $10 each but $35 dollars for a sturdy, spacious and good looking gym bag is pretty great if you ask me. I have the Graffiti Dot tote and LOVE it. A few weeks ago I put an iPad, two chargers, a pair of little boy sneakers, two changes of little boy clothes, a teddy bear, a stuffed Chica, my wallet, and two cups into the tote with a little room to spare. It blew me away and truly saved the day.

Personalization is extra and you can view all the personalization options here: https://www.mythirtyone.com/content/embroidery.aspx

Please note that nothing in this blog represents the views of Thirty-One and vice versa. I’m just excited to offer nifty bags to help raise money to get J to his pup! 20% of all sales will go in the travel fund.

If you have any questions, please contact me at mamabear @ jbearandme.com — If you would like to donate directly to us, you can do so at our Razoo page! It’s located here: http://www.razoo.com/br/causes/Operation-J-To-Dog

This party will end at midnight on 4/24/2014 with all orders being processed at that time – If you need something sooner please contact me and we can see what can be done!

No One Autism

Autism is not exclusively the realm of children, despite what the media puts forth. Autistic children grow into autistic adults. Crazy notion, eh?

There is no one autism. There are hallmarks that allow for diagnosis, but the adage told to people just becoming familiar with the autism community easily holds true: When you meet one person with autism, you meet one person with autism.

What works for J may or may not work for his classmates, just as what works for them may not work for J. This is life. Don’t we all deal with this every day? He is cut from his very own unique piece of cloth and he’s going to forge his own way whether any of the rest of the world likes it or not. It’s my job, and the job of anyone who actually loves him, to be at his side willing to help him find what he needs to do that.

Unlike the images that Autism Speaks puts forth, I see his future and that of his peers as tremendously exciting. The world is vast, and the possibilities are endless. I see this because I see so many adults with autism sharing their stories, their struggles and their successes. They lay facets of their life bare for the world to see to show just what can be, and for that I am both awed and amazed. Awed, because of the bravery it takes to be honest in a world that is dominated by people who’d wish to marginalize them and amazed because they’ve all showed me I do not have anything to be scared of.

J’s path will intersect with many other autistic experiences but it will run it’s very own course. He will grow from a boy into a man and I am so curious to see who that man shall be. I cannot say I am eager, for I do not want my dear little guy to grow up too fast on me, but I am excited. It’s like being deeply engrossed in a wonderful series of books: each book is so exciting, and you keep giddily awaiting the next volume to find out just what the protagonist will do next.

This is our autism. We don’t need to wear blue. We just need to live out loud and show the world the beauty we’ve found.

How Compassion Works

I had a stunning example of how compassion works and how compassion does not works today. Here’s what happened:

We went to a local chain hair salon to get J a haircut. Haircuts and J, apart from his very first on his first birthday,  have always been a tremendous struggle. Everything about the process is just torture for him and though I prepare him – social stories, showing him via toys what’s going to happen, etc – it just has never been truly successful. It’s overwhelming, all those sounds and smells and people touching you, but when you’re blessed with a gorgeous and ridiculously thick and fast growing mane like J’s it’s a necessary evil.

So, the bad first:

The stylist who ended up cutting his hair did a good job. I cannot deny her that. She did the best one could with a squirming, crying child as I held him on my lap. That part I cannot lay at her door, she could never have helped it.

It’s how she spoke to us prior to the cut that I can.

A lovely young woman greeted us when we arrived and was very gentle and understanding with J. She pushed nothing, let him take his time, spoke to him directly and attempted to connect with him. He recognized this and despite tears, he started to slowly warm to her. She gave us leave to use her chair and explore her work station for however long we needed as, sadly, she was leaving. We sat down, worked on a lollipop and worked on reclaiming J’s calm.

Our stylist used the chair next to the one in which we were sat. The woman had a client in her chair, who I will talk more about in a moment. She ignored J mostly and when her client was done, she walked over to the computer and finally mentioned he hadn’t been put in as waiting. She bluntly informed me that if he wasn’t going to sit, she wasn’t going to bother because they had plenty of people waiting.

Um… Weren’t we people?!

I insisted we’d get through it and she answers along the lines of “Fine, but he needs to sit still, it’s not worth me getting cut.”

Wow.

He’s not tantrumming because it’s fun. He was losing it because he was terrified and being spoken to like we’re things, yeah. That doesn’t help. I bit back my utter horror and embarrassment for his sake and we got through the haircut. Notably, the only thing cut in any of this was hair. Shocking, right?

Then there was the good.

As we sat in the first woman’s chair getting used to things the client beside us, a man with salt and pepper hair, chatted J up. He pointed out how he wasn’t being hurt, how it wasn’t hard, and just generally tried to truly engage him. He asked him questions, made a few comments about his beloved blue bear, got him going about Thomas… He had no idea what J was dealing with or that his compassion and patience with the screaming little boy beside him was above and beyond. He just did it. It helped, a lot. It got J calm enough to even begin to entertain the idea of going through with it and though he cried during his cut, he did not fight as usual. He let me hold him, and we got things done.

Empathy, understanding, the realization that just talking to someone can be an amazing thing… Funny the wonders that can create!

The woman who cut his hair made small talk about knowing kids on the spectrum and such, but she never took to heart what these kids deal with. The man who never knew he was encountering such a child just did what I wish the whole world would, saw a child struggling and did what he could to help when he saw his actions effective. J looks incredibly handsome now and I will have to snap a picture later, just wanted to get what was eating me about that encounter down before I forgot about it.

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