J-Bear and Me

learning to navigate the world, j-bear style

Month: August 2013 (page 2 of 3)

Random Bits and Pieces

I wonder if everywhere has a supermarket chain that has great prices and selection but shopping there feels like you’re entering a deep circle of hell. Here, it’s Market Basket. Today I took J out to go grab groceries as food was running low. We got on the highway just in time to learn that going to our usual Market Basket, a larger store about 20 minutes away, was not going to happen due to major traffic overcomplicating the journey. We went to the inferior store in Woburn and wow.

Just, wow.

Imagine every inconvenience about grocery stores: People standing in the middle of aisles, stock clerks cluttering up even more aisles, people not caring where they are going, people acting like the world revolves around them, too narrow aisles, an absolutely not intuitive placement of products…. All of this converges and amplifies within this one store. Add to it a ridiculous parking lot and I thought me and J were going to pull out our every last hair.

I should have known better when J was crying upon entering the parking lot. I should have trusted his judgement.

We managed to reasonably grocery shop but man, what an ordeal. The poor kid, he sits in the cart itself and not the seat because he feels more comfortable and secure that way. The filthy looks you get for this are bizarre. I am not letting him run rampant through the store, let’s leave things that work alone. He was happy, I was getting shopping done, life was alright. If they want to have inflamed hemorrhoids over it that’s their deal.

But yes. Food acquired. We’re home. I hate you, Woburn Market Basket. Considering me your forsworn enemy.

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There are legal matters surrounding this so I do not want to go into too much detail but if you can spare prayers for J’s godfather and his dog, they both could use them. Mr. Dog is home and resting after lengthy surgery repairing his back legs. It’s a mess right now. Lesson: Don’t be a jerk of a dog owner and leave your animals to run loose without care or training or else they could cause this to someone else.

To be clear, Mr. Dog was not loose. He is always responsibly looked after because his person loves him more than words can say.

This dog is the first dog J ever met. They were wary of each other on first meeting, unsure what the other was even going to do, but quickly turned into fast friends. Mr. Dog is so good-natured that when J would grab his tail or go after him in some way he just accepted that this is what J did. I think it’s because of all the food J would drop for him.

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I saw Wicked last night. It was so much more amazing than I even imagined. So amazing I even bought a t-shirt and I haven’t done that since I saw Riverdance with my Nana and family in 1999. So, so, so incredible.

—————–

J’s cast comes off Monday. Never you fear though, he’s already searching out creative new ways to break more bones. Oi vey.

Upcoming Fundraiser

On Saturday, September 14, we are going to be holding a yard sale in Stoneham, MA, to benefit Team Jacobly for 4 Paws!

We’re still deciding on the details but if you’re local to MA, we’d love to have your support!

How can you support us?

– Swing by and pick up sweet deals on fabulously random items! We have bags! We have gently used clothes for small children!

– Donate items for sale – If you wish to do this please contact me at mamabear(at)jbearandme.com so we can discuss how to get items to where they need to be. Have car and carseat, will travel!

– Can’t be there? Still want to participate? Thanks to the generosity of the Carpenito family we have some beautiful bracelets for sale! They are $5 each and all proceeds will go directly to 4 Paws to support Team Jacobly:

braceletforjacob

Super cute! One size fits most with an elasticized band!

More information to follow as it becomes available. We are also working on a raffle instead of a silent auction now. Raffle! Because… Raffle!

Lessons Unlearned

On July 28th, J broke his elbow from throwing his body around in an effort to self soothe/stim.

It’s what, 2.5 weeks later? He’s back to the same antics.

Crashes his face into the frame of the couch. Crashes his body onto the floor. Jumps off anything he possibly can.

On and on and on it goes.

When he has school and constant busy, this lessens, but I cannot keep up with the demand. My lower back is injured. My body is still not 100%.

This, atop so much else, is just a huge recipe for depression and self loathing.

Of course I know things get better. Nearly always, one way or another, they do. But tonight, as George R. R. Martin wrote in one of his books, “the night is dark and full of terrors.”

Yeah

Little bear has a new ‘thing’. It”s actually a very good thing that did not become a thing until he saw the strong reaction it got.

J is still recovering from his cold. This means he has occasional coughing fits. When he has one, I generally ask “hey, are you alright?” after he’s done. It used to be that the question would go unanswered but he might look my way or just generally putter around as per the usual, showing me that he was indeed okay. Sometimes I have to use this to distract him from the temptation to try forcing a gag that won’t work. Yeah, that’s another thing for another day.

Yesterday this all happened while he was standing across the room and as the coughing calmed, I asked “are you okay?”. He looked directly at me, a rare occurrence in and of itself, and nodded stiffly then said “yeah”. Clearly. With meaning and intention.

I was stunned.

Now, as I’ve said before, J is not a silent kid. He babbles a lot and is echolalic, meaning repetition is king in his language. His skills in repeating words have exploded in the past months, enough that one must watch what they say around him. The words come out most when he’s in a place he is secure and comfortable, so I hear them all. It’s not often he is asked a question and gives a direct, precise answer though. It is quite, quite rare.

So of course I gushed and teared up and wrote on Facebook about the event.

Now, never ever let non-verbal fool you. Never let it be thought that J doesn’t catch ever nuance of what’s going on in the world around him. Why? Because wouldn’t you know it, now every time I ask if he’s okay he automatically crows “yeah!” in search of that big, happy reaction. There’s snot pouring down his face and he’s hollering that he’s just fine.

We have some learning to do, but it’s going in the right direction so yeah…We’re alright.

Not Broken

This is something that is hard to write about. I will likely cry through the whole entry but internet, I’m trusting you to hear me out here.

My son has autism. He has sensory processing dysfunction. He is non-verbal. He is delayed in several areas, some significantly.

He is not broken.*

I want people to meet children like my son. They have a lot to teach all of us. Their biggest gift is the lesson that while different, they are no less worthy. They are no less loveable, no less able to learn, no less deserving of human dignities and respect. They are strong, beautiful souls and minds, ready to take on the world in their own way.

Will he do things in the manner most would expect? Likely not. I can’t say definitely one way or the other on that count because, like all children, he surprises me regularly. The quick snapshot most of the world gets of him is just that, a brief moment in time. It does not always reveal the startling depths of his curious, intelligent mind. He is an astonishing problem solver, working out how to meet his self-made goals efficiently and effectively every day.

These are not the signs of someone broken. Of someone sick. Of someone who needs to be somehow altered and remade.

My son needs tools. A lot of tools. He needs more tools than other children his age in some areas. We, as the custodians of the world in which he and his peers live, can give them these things. It’s not hard. It merely requires you to stop and think outside yourself. You will find while you learn to find the tools he needs you learn new things about yourself and the world around you.

People like my son will teach you the true depths compassion and joy can reach. My son’s young mind is so beautifully non-judgemental of the people he meets. They are who they are, and he will take them on their own merits. He finds delight in simple things, making the commonplace truly extraordinary. Some of this is the simple wonder that comes with being a young child with an unfettered mind; a child whose sense of wonder is still gloriously intact. The rest… The rest is J being J and seeing the world through his unique and mysterious lens.

Please don’t try to fix my son. Please don’t try to help me do so. You see, I am blessed. My son is not sick. My son is strong of body and mind. Just be there to offer tools to help him show that mind to everyone he meets and the rewards will be limitless. When you infer that he is broken, you step on a very broken piece of my heart. I have seen parents struggle with children who are ill and could use a miracle. Please don’t speak like we need what they need more. J and I are the lucky ones. Just let us enjoy that.

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*= couldn’t completely say that in truth given, well, his broken elbow but hopefully my point is still clear.

Diagnosiversaries

Yeah that’s not even a word, I know. Bear with me. I know I ask that a lot but I hope the result is generally worth doing so.

From April of last year until J’s birthday this past June we were a part of our local Early Intervention system. These folks were by and large amazing. I think of all the professionals I met through them I only had one bad experience. That’s a pretty awesome track record. J’s coordinator, OT and his group leader are the ones who encouraged me to take J to see a pediatric neurologist to see if what they were seeing was what they believed they were seeing.

J’s neurologist at Floating Hospital for Children in Boston is wonderful. I remember being so uncertain what that initial appointment would entail. It was nothing compared to what my brain feared. I thought it would be long, scary and invasive. It was calm, simple and direct without being intrusive to J. The neurologist did a brief physical examination and more importantly he spoke to those who knew J best as well as observed J’s behavior during the appointment. The world at large doesn’t always see it but J has a few distinctive behaviors that point professionals to thinking he has autism. He did them all in the room that day with the neurologist and said doctor came to his conclusion quickly.

He was diagnosed. It was real, autism was officially part of the family and the spectre in our midst was given a name.

There is a deep sense of relief that came with this. There’s a lot of things surrounding J’s diagnoses that I am sad about yet it is not that he actually carries them that necessarily causes it. The relief washed over me that now we could get help. Resources would be available to us that were not prior to that word being attached to his medical record. There was hope.

Hope came in the form of a young lady from Building Blocks (an ABA provider) who got J in every way you could ever hope a teacher or therapist could understand your child. She, along with his Early Intervention team and later an additional OT, a speech therapist and another ABA provider, set J on the road to translating the awesome little person he is into a language everyone around him can share. They brought words into his life. They brought signs. They brought relief for his sensory processing troubles. They brought laughter and joy and confidence. They not only taught him to be the best he could be but taught me what tools were out there to be his mom in the way he needs me to be.

I might be a lucky one. I have led a life that has left me with strange expectations of the world at large. While I was pregnant with J and when J was born, my greatest hope for him was a happy and peaceful life. It did not matter if that meant he became an astronaut, a professional athlete, an artist or a garbage man… His joy and peace were and are what I prize most as they are what I feel to be the greatest things we as individuals can achieve. Autism unsettled that hope but it did not destroy it. The diagnoses J has received do not disrupt his path but instead delineate it. He will travel forward just not in the way anyone may have initially planned and that’s okay. He’s still going forward.

If any of his team are reading this, I have a note for you: Your funny boy is still funny. I handed him something earlier and he thanked me in Chinese. He loved his summer school and learned the routine quickly. He’s working hard to understand the words “stop” and “no”, occasionally even using “no” appropriately in various situations. He’s growing a little more each day and it’s all thanks to the amazing foundation you laid for his progress. There will never be enough words to thank you all for the precious gifts you each gave him. The kids you work with are so very lucky to know you all!

Stupid Colds

So I learned something new.

The puking that I was likely hypersensitive over may actually be his warning sign of getting a cold.

Could there BE any more disgusting a warning sign?

I shouldn’t ask, that’s like a challenge to the universe. Dear Universe: I’m stocked up on messed up stuff right now. Sincerely. Your efforts are noted and I am in sufficient awe of them. Please proceed no further in this direction.

J has a cold. Now, I can  handle a lot of the stuff that comes out of him. I have gone through puke storms, I have seen him through major digestive fail, I have dealt with pretty much anything his body can throw at me.

But snot? Oh my gosh it’s like a non-stop nausea inducing disaster over here.

Every time he sneezes, Mount St. Snot erupts all over the front of him. I am only barely exaggerating. This is SO GROSS. Nothing makes me gag more than this stuff yet I have to calmly shuffle over, use tissues strong enough to wash pavement to clean his face then carry on with our day.

Meanwhile all I want to do is sit in the corner gagging yelling “EWWWW” while doing the cootie dance.

How can one small person create so much gross snot? More importantly how can they do it and still find the energy to do anything else?

It’s going to be a few long nights of Tylenol, Benadryl and seven million tissues in this house. At least I remembered to crank the humidifier for him so his nap didn’t leave him waking up crying. Yay me?

I need a vacation. 😛

Medicaid Info for MA Families

I know there’s a few MA families who read this so I thought I would put this out there.

Children who are diagnosed as having autism are eligible for CommonHealth, the disability arm of MassHealth. This can help you with medical co-payments if you go to providers that accept MassHealth, hospital bills, medical visits… It can help with a lot.

There is a secondary program that you may apply to after a child is approved for MassHealth that assists families with paying for their child’s private primary medical insurance. It is called the Premium Assistance program and it can be a godsend. It is via this that J is able to remain with the OT and Speech people he loves so very much.

Here’s how to apply:

For MassHealth visit here, click “apply” on the right hand side of the screen and follow the instructions provided: http://www.mass.gov/eohhs/consumer/insurance/masshealth-coverage-types/masshealth-commonhealth.html

Once approved for MassHealth, which can take a few months, apply for Premium Assistance by calling 1‐800‐862‐4840 and staying on the line. State that you are calling to see if your family qualifies for the CommonHealth Premium Assistance Program and the agent will assist you from there. This process was, to me, so very much more easily handled than the initial MassHealth application. You can read more about the program through a brochure offered by the Federation for Children with Special Needs: http://fcsn.org/mfv/publications/mscpa.pdf

My experience with the application process for MassHealth involved receiving a lot of confusing paperwork initially. If your family is making over 300% of the poverty limit they will send you a rejection for everyone else in your family but the child for whom you are applying for disability coverage. You may even get multiple letters stating this. Don’t panic. Whenever you have questions or concerns, there’s a number on the letters to call and I found the agents to be efficient and helpful for the most part. Out of the many times I have called only once has someone been rude to me. Given that dealing with government agencies doesn’t always go well I consider that a great success rate!

When you are initially approved for MassHealth you may be required to pay a premium. This premium, for me, went away when Premium Assistance kicked in. Does it go that way for everyone? I’m not sure, but the premium I was told to pay would have still been worth it when you compare what I would have otherwise shelled out-of-pocket for hospital bills and medical co-pays that MassHealth picked up. If you wish to use CommonHealth for pharmacy benefits keep in mind they have to get all prescriptions pre-approved before a pharmacy can fill them under those benefits. It’s not something I’ve done yet as J is not medically involved enough to need it but I will come back and edit this post when or if we do experience the process.

I hope this helps someone out there. Early Intervention showed me this whole process and was amazing in leading me through it. Thank you, Virginia and Loretta!

Return of a Problem?

Yesterday we did something awesome that was mentioned on Facebook but that I will go into detail next week. Suffice to say J had a lot of fun and we made a new friend.

On the way home, something troubling happened. This kid is, in general, a great car traveler. He hunkers down in his seat and watches the world go by. He’s gone on very long car trips many a time and just plain done great on all but a couple occasions. The lesson was learned the hard way that rear facing and him do not, for any reason, get along and once that was remedied he’s mostly had great success.

So why then did he vomit, violently and suddenly, just as we were pulling into our driveway yesterday?

Yeah, I know, it’s “just puke”. Yet… it’s not. Remember, this is the child who was routinely vomitting several times at points. Having him only puke once a week was a relief. This is a major component into why his tonsils were removed: his vomitting seemed primarily caused by gagging since they were overly big tonsils. He could gag on water sometimes, it was beyond frustrating. The tonsils came out on June 3rd and apart from just after surgery (anesthesia is mean) and a bad incident with too much dairy on a 100 degree day (baaad)… There’s been no sign of recurrence.

So either he has a bug which I cut off at the pass with a dose of zofran last night, it was just a fluke, or there is something going on. He has been having staring episodes again which frightens me every time they happen.

Back to calling doctors I go. This merry-go-round, it is NOT fun.

Fishy Face

I had a totally brilliant idea for a post as I was falling asleep last night and of course I completely forget what I was going to write about. I’m a genius like that.

J has been stretching his acting skills the past few days. He works up this convincing to strangers but absolutely unconvincing to those who see him daily fake crying business. Once in a while there’s even fake tears that go with it, it’s pretty impressive..ly bad. Like, really bad. He’s one of the worst actors on the planet as he is blessed/cursed to have a face like glass. A poker player he shall never be, that is for sure.

One of the sure ways I can usually bring him back from the depths of his threenage angst is to make a fish face. You suck your lips in and look a total fool pretending to be a fish and all that.

Only J thinks fish faces = kissy faces. He turns around immediately to come over and get a kiss. He also finds it to be the funniest thing ever. If you ask for a kiss otherwise he either turns his cheek to you in offer for one or he makes a loud smacking noise from a distance. If I bust out the fish face though he’s Captain Kissabug.

And it’s hilarious.

The first thing strangers seem to believe when I mention J has autism is that he is cold and distant. This is such a dreadful stereotype. Sensory input on any level is a different animal to a person with autism than it is to a person without it but that doesn’t mean they do not crave affection. This does not mean they are not warm and giving. It just translates in a manner we might not expect and sometimes, as in the case of fishy face, in a manner most delightful. My son is far from cold and distant. In fact, he’s quite the snugglebug to those he feels most comfortable around.

I wonder how old he’ll be before fishy faces are just not the done thing. I hope it’s not anytime soon, it’s too cute to wish it away.

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