J-Bear and Me

learning to navigate the world, j-bear style

Month: February 2013 (page 1 of 2)

Insurance and Interludes.

I am gearing up for a battle. I am not sure who it is against, if it is versus Blue Cross Blue Shield of MA or if it is versus my son’s doctor’s office.

Here’s the tale.

I requested, in early 11/2012, that a referral be processed to the Occupational Therapy clinic my son was about to be evaluated at and now receives therapy through. No response as you only speak to a voicemail. Several weeks in, the clinic received no referral. Not only did I call them, I also brought over a sheet with a list of required referrals to Occupational Therapy at said clinic for 2012 and 2013, for his evaluations at Floating Hospital, etc. Everything was laid out in very specific detail. I ended up giving them this page TWICE.

Fast forward to this month. The referrals have never appeared. I call and speak to the office manager, who forwards me to the one woman who processes referrals. She hits me with “you never requested them.” I hit back with dates, times and visits on which I gave them the printed list of what he needs as I know it’s a lot. They send referrals. The referrals are for the wrong dates and wrong person. I call back. We return to the “you never told us” line. I repeat all the times I told them. I get a hang dog return call saying it’s all straightened out.

OT clinic calls me and states they got the referrals. For speech therapy. J does not begin speech therapy for a month and I had mentioned it to no one at all at this point amidst the effort to sort out the occupational therapy nonsense. I call back the woman at J’s primary care doctor. She huffs, sighs, says she’ll “figure it out”. A couple of days later I get a sing-song voice mail saying it’s all taken care of but you only get eight visits for the year, good luck and have fun!

Are you kidding me?! This child, by all recommendations, needs far more than eight visits in a calendar year!! He goes twice a week! We’ve already blown through the 8 visits and it’s not even March!

Now I have to fight someone to get this straightened and face the fact that I might have to remove J from a clinic that is amazing for him to another that might not meet all his needs quite so well. I am nauseated and frustrated at the idea of this. These women, alongside with his ABA therapists and EI case workers, have been life changing to him. This combination of team members has fit together just right. I do not want him to go somewhere he is not so well cared for and I am uneasy about our other options. For now, I am stuck in the hurry up and wait.

————

Yesterday morning at the OT clinic, a boy of about 8 or 9 came into the waiting room while we awaited J’s appointment. My guy has been working hard on greeting people, which comes across like Wall-e greeting E-va for the first time. He walks up and gets a little too close, then says slowly “hiiii” with a funny little wave. There’s a warm smile to match all of this but it’s still that little alien odd. Most children either ignore him or they shrug it off and either play with or around him, no big deal. This little boy made my day and I so wish I had thought to tell his dad what a good boy he has. He said hi back to J and asked him what he was playing, then tolerated J’s staring and curiousity. He was very kind to him in his own way. 

I appreciated that a great deal. Some kids just get it, and this kid was one of them.

———————-

What happens in Parent Group doesn’t always stay in parent group. A final quip:

You haven’t lived til you’ve talked about poop charts and flame throwers in the course of the same conversation. 

Change of Plans

I was going to write a post about fear, about the heavy things that weigh on my mind.

Then, J-bear went and learned a new skill today.

… He learned how to play catch.

My son, who has absolutely no reflexes when it comes to even raising his hands to prevent things thrown at his face from hitting him, learned how to play catch. I’d been standing behind him, holding his hands and showing him physically how to catch a soft ball tossed to him by a therapist these past few sessions just as a lark. He never even attempted to catch it once before today, just thinking it was hilarious when the ball bounced off him. 

Today, I let his hands go and he caught it. How we cheered! He’s played catch (throwing and catching all on his own) a few times with me now and like a fool, I end up near tears every time. 

So many things are so very sad and scary to me these days but this little victory and all those like it are what I live for.

Oh, Cookie…

Cookie Monster is owned by the Sesame Workshop. No ownership implied here. He's all their's.

Cookie Monster is owned by the Sesame Workshop. No ownership implied here. He’s all their’s.

See that cute blue face? Enemy number 1 in my house this morning.

J-bear has a touch of a cold and therefor has been in a mood anyway, but then Cookie comes on at the end of Sesame Street. Gone is my sweet, mild mannered dancing son and in his place is a face stuffing cereal monster mimicking Cookie.

… If I had not run the vacuum then carpet cleaner an hour earlier I might not have been so NOOOOOOOOOOOO about the entire situation.

At first, I watched in horror. Then I dashed into action to save my (ugly, ugly, UGLY but clean) carpet from the destruction of my Cookie Monster inspired minion. I just happened to have left a cloth diaper nearby or it would have been a tragedy all over my living room floor and hands.

So Cookie? We’re no longer talking. Not until J-bear has the communication skills to understand that while one may think your style of eating is funny, it is not wise to actually mimic said skill. Mama’s sanity can only take so much.

Hitting the Random Button

Yesterday, we had OT and ABA. ABA was cancelled due to his therapist feeling ill (feel better N!) and I got all excited. We could go visit IKEA which is one of our favorite places! Only that didn’t work out.

I battled with his primary care doc’s office over insurance shenanigans.

Now, a little background is in order. I myself live with complex PTSD. One of the things that really triggers my symptoms is being treated like I have not done something I have very, very clearly done. I start to panic, it’s a rotten mess. I know this about myself, thus I do my best to document everything for situations such as that. I keep track of phone call times, text messages, emails, visits… I have a pen and paper calendar (who DOES that anymore?! Oh yeah me) and it comes with me nearly everywhere we go.

So yesterday the battle begins. J-bear’s OT office calls. The fantastic office admin sounds so sheepish when I answer the phone. Insurance has failed. Again. The referral she was given was wrong in multiple ways. She can’t get a call back from the office and isn’t even sure what to do. I apologize to her profusely, as we’ve fought this battle since November together, and when I am finished with her I am immediately on the phone to his primary care doctor’s office.

Now, every single person there that I have talked to told me I was wrong. Not only was I incorrect about what the OT’s office was telling me, I had never requested the 2012 referrals and it was my fault they’d had the wrong information. My nervous nature had prodded me to write out a document with all of my son’s pertinent details, every detail of his providers requiring referral as well as dates those referrals were needed for. I delivered this document 3 times. THREE. I informed the women I spoke with of this. They told me I was wrong (!!!) and that I’d have to fight with insurance to get this all covered but they’d see what they could do.

How kind.

30 minutes later… After I’ve already learned that wrong names and medical records numbers have been kicked around, I get a call back. They were so hangdog about it. They found their obvious errors. Everything was being immediately fixed. Never an apology, but I’ll forgo that if his care can continue unimpeded by their idiocy.

… Meanwhile she called my son the wrong name every time she mentioned him.

This brings me to another topic on the random generator: My son’s name.

I saddled this kid with 3 first names in the course of his full and complete legal name. Yeah, I know, signs he’s either going to play baseball or be a serial killer right? All of these three names are common first names. He routinely gets called his last name as his first name. It’s mildly annoying. Having his already short first name shortened further… mildly annoying.

The teacher who called him “Kyle”… completely unrelated to his actual given names…. that was something special I still can’t get over.

Whenever something naughty happens he might try to ever blame on someone else I am going to blame it on Kyle, my invisible son that must surely follow J-bear around!

And last on this weird journey of an entry, I found a balance disc for J-bear, one of them inflatable things you use for workouts. He loves to stand on people to try and balance and honestly, it hurts to have 32lbs+ of toddler balancing on your legs or back! He is loving the disc and sits or stands on it, plus it was fairly inexpensive at Wal-mart. I’ll try and get a picture of him surfing on it this week. Right now he’s too busy trying to be a bat by hanging off the couch and I am going to go rectify that.

We have rafters to hang upside down from after all.

😉

Goals?

I do not know why in the darkest hours of night I was thinking on this question but I was.

“What goals do you have for your son?”

My son is not even 3 yet, though every day he’s closer to that scary 3rd birthday. My goals are simple: to have us survive his early childhood with our sanity largely intact. 

Part of me is sarcastic in saying this, most of me is serious. This is crazy hard work. He challenges me every day in ways you would not expect. As I type this, he stands before me yelling random syllables and sounds. I think he is trying to learn how to modulate his voice as he’s generally prone to whispering when confronted with a loud situation. Meanwhile, the house is quiet but he’s bellowing a story in his own language. 

For those interested, his language is a lot like what the Minions in Despicable Me speak, right down to interjections of familiar English words and phrases. Only one out of all his so many therapists and care team has gotten this reference, but thankfully she immediately said “YES”. It made me feel good, strangely enough, that my insanity was shared.

Anyway… Of course I have goals. I have places I want to reach today, tomorrow, next week, next month, next year, etc. We’re so very early into this journey though so my goals aren’t grand. They’re simple. I want to lay a good foundation for him and then we can look at more structured, specific goals to reach for in the long term beyond giving him all he needs to interact with and enjoy the world in which he lives. 

The actual thought that spurred this post was thinking of J-bear in his 20s. What is it I want for him when he becomes an adult?

Frankly, in my exhausted state, my first thought was simply: I want him to be potty trained.

On that note, it’s time to get into what is one of our busiest days of the week. 

Another Day

sweet baby boy

oh come on, lady

 

So this is J-bear in December of 2010. He’s a couple weeks shy of 6 months old and yeah. I saw this face lots but man, wasn’t he a squish.

Still feeling down so thought I’d just throw a few pictures of cuteness out there for the world to enjoy.

happy clam!

happy clam!

This one is September 2011. He LOVED those cars! We still have a few of them and he can play quietly with them for what feels like hours.

hat head

hat head

And there he is in my 100 year anniversary of Fenway cap. He actually submitted to wear this hat without much fight. It was pretty shocking.

With that,  I conclude this fluffy post with more actual meat to follow soon.

 

 

The Roller Coaster

Much of the time, I am doing all I can to be optimistic to the point of obnoxious about J’s situation. We can do this! Keep moving forward! Research, research, research! Schedule therapies! Onward and upward!

Then there’s the days where logic brain takes a trip on the failboat and I am left with emotional brain, all raw feelings and little control over any of them.

Emotional brain and I do not get along too well. It tends to cause me a lot of grief because it spends a lot of time drowning in the depths of sorrow, anxiety and outright fear. It’s not even a nice place to visit, never mind spending any appreciable time there.

Today is an emotional brain kind of day.

Logic brain knows that in the grand scheme, we are so very blessed. Therapies are readily available. Insurance is at hand to cover all that he might need, even if it comes with a little battle. Progress is being made, even if the movement forward feels miniscule some days. We are fed, we are clothed, we have our physical health largely intact and we also even have the ability to meet wants now and then. Things could be so very much worse than where they are for us today. I am grateful for my blessings.

Emotional brain forgets this. It sees a little boy J-bear’s age come into the OT waiting room and answer the person preparing to do their evaluation in clear, articulate sentences that make him sound like a grown person compared to J and drags me down into a well of unending tears. It is raw, cutting and biting. It is a pain you can’t easily escape. You see something that is not as it should be with your child and with every fiber of your being you want the magic band-aid that will make it go away and have all things be as they ought be. You want him to be that boy, forgetting the logical right of things that would quickly point out doing so would deprive you of the child you know and love so well.

You want to pull the covers over your head and make all the hurting stop. You want to wake up tomorrow and have everything be normal.

And that’s emotional brain. It’s a very powerful thing, but it is not always the right thing. It is good to acknowledge it, it is good to let it vent so it doesn’t explode on you (as mine tends to do, usually in the form of random crying fits)… it is good to realize you are not alone. There are millions of moms, dads, brothers, sisters, stepmothers, stepfathers, grandparents, aunts, uncles, cousins, friends, teachers, therapists… There are millions of people who fight similar demons. It’s so hard to remember but it is okay to feel everything you need to feel yet to not be so possessed by it you are too paralyzed to act.

Today though, today is all about emotional brain. It is about feeling every inch of the hurt, pain, fear and sorrow. I will examine it, wallow in it, let it be all I see for just today. I will cry, rage, do everything I need to do to feel better and work through all of this mess of emotions that dealing with everything brings up.

Tomorrow, I will be okay. If I am not okay, I will be okay enough to make myself seem okay until I am very much okay again.

I was interrupted in the writing of this post by J-bear bringing his weighted blanket over and throwing it on my lap, a sure sign I better wrap him up in it and give him a good squish or else my laptop would be forfeit. He’s not going to allow me my pity party long, that one.

 

Oh, my dear boy.

Dear baby bear,

Today we sat through a far more brief appointment at the Center for Special Needs at Floating Hospital for Children in Boston. Today, they told us the particulars of what, where, when and how about you.

You are as of today diagnosed with autistic disorder. This is ‘classic’ autism. 

There is so much in the report these wonderful clinicians gave us that both gives me hope and breaks my heart. It hurts me to see words that, down the road, could be so painful for you to read about yourself. It hurts me to envision the challenges you are going to face. It heartens me to realize how far you’ve come and how well you’re cutting your own beautiful path. When you are compared to your neurotypical peers, you are roughly a year behind in social and communicative development. When you are compared to your own progress in this past year, you are amazing. 

… And we’re not stopping.

Clinicians who see you only briefly get but a snapshot of who you are. A lot of what they saw is very, very you and yet they do not get to see the side of you enjoyed by those who love you every single day. That’s a gift you save for us and a gift we want to open, slowly and gently, for the entire world to share in. You are inventive, dogged, determined, silly, joyful and above all so very, very loving. This is who you are and who I will do my best to always allow you to be. 

This diagnosis won’t diminish you. It’s going to be part of that which hones all of us, side by side, and part of that which makes you so utterly unique and amazing. 

The future is scary. You will be 3 this coming June and it saddens and scares me to think of you spending full days at school almost the whole year ’round. I ache to think how much I just want you to be a free spirited little boy, playing outside all summer and being just full of excitement and exhuberance… but we will find a way to have that AND have your very specific needs met. Your learning and growing will be fun even if at times it is hard. We have been so very blessed so far to have wonderful people working with you, people who bring light, laughter and energy to their sessions with you and make such hard work seem so much like play. It’s my job to make sure you always have people like them. 

You’re going to be a grown person one day and look back to read these things just to say “ma, you ramble”. And all I’ll say as I gnash my gums is “duh”. 

I ramble because I love you. I ramble because my gosh little boy, such hopes I have for your future. You don’t need to be president or win a Nobel Prize, though those things would be cool. My greatest wish for you is that you are a happy, secure, confident adult pursuing that which brings him the greatest peace and joy.

Just don’t make it puppy sacrifices or some such, okay? I might have to object.

I love you my little monster,

Mama.

Image

j-bear, 10/2011, visitor’s dugout at Fenway Park after throwing gluten free cookies in the outfield. sorry, grounds crew. 

Snowbound

image

there is one jbear of snow outside! better entry coming soon.

Touche, son

“Sweetheart it’s time to get ready for therapy.”

image

Alrighty then, young sir!

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