LIFE IS A SPECTRUM

vdayFISH

Billy has a fish named Eric. It's a homicidal maniac that killed its three tank-mates, but that's a Halloween story. Or maybe a Christmas story, since he got the tank and fish for Christmas.

But anyway, this is a heart-warming Valentine's Day tale.

Today, Billy had group therapy. A wonderful program at the FSU Speech and Hearing Clinic, group therapy allows him to get together with two other guys about his same age, and each of them have a grad student speech therapist assigned to them, and together they work on group interactions. They play games together, share snacks, complete projects.

Because Monday is the big V-day, they made Valentine's cards together. Great idea!

And this scene, worthy of a Hallmark movie, unfolds ...

INT. THERAPY WAITING ROOM – AFTERNOON.

Moms wait, purses in lap, staring at the clock as the final minutes of group therapy tick away. (Actually, we just barely made it back from Starbucks around the corner in time to pick up our kids before they locked the building.)

Beautiful Boy #1 – we'll call him CUPID – comes barreling into the room. He spots his mom and hands her his home-made card.

CUPID: I love you, Mom!

All the moms are choked up as she gives him a big hug and they admire his handiwork together. Heck, I want to hug Cupid.

CLOSE ON ME

Expectant grin on my face.

ANGLE ON WAITING ROOM DOOR

As Billy comes barreling in.

CUT TO:

CLOSE ON MY FACE

Expectant grin is wider. It's my turn. MY TURN!

ANGLE ON BILLY

As he drops his home-made card on the floor and heads for the water fountain.

CUT TO:
ME

Grin falters... but then I take a deep breath. It's OK. I've still got the card. I plaster the grin back on my face and reach for the card.

ANGLE ON THE CARD

As I pick it up and see this:

 

vdayToEric

I swear to you I saw that evil fish laughing at me tonight.

Reader Comments

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The Valentine's Day card I got from my husband was heartfelt. And the picture that my son Sam drew for me at daycare was sweet. But to be honest, this post is what kept me smiling all day long - and knowing that I wasn't alone. God bless Eric.

Whose side are those therapists on?

Really? They couldn't have intervened on that? I'll give them the benefit of the doubt...maybe they thought that Billy's "mommy" was named Eric.

So funny!

I've just been catching up, and am laughing hysterically at Eric the fish and the Tina Fey story! So funny! The Disney story, however, is upsetting...even though I don't have a child on the spectrum, that bullying scene should have been stopped. I'm hoping the copious notes the rep on the phone took will actually be used to help Disney's policies!

Agree with Maura

nobody can take the place of a boy's momma!

Cute card! Nothin' says love like pipe cleaners.

I do hear the undercurrent of an "ouch," though. Chin up, friend. I'm sure Eric's one hell of a fish, but we all know you're Billy's girl.

(Tina Fey only comes in second.)

Oh My Goodness!

Oh Amanda! I feel your pain and I KNOW that had to hurt but ... I am literally laughing out loud! I'm glad you found some humor there! :)

Cute!

Thanks for my morning giggle, Amanda!

Hugs,
Wendy

P.S. Just a heads-up that the text in your sidebar is doing weird things...font just keeps getting bigger and bigger as I scroll down the page...might want to get your personal technical advisor to work on that for you! WM

Too funny!

Oh girl, I know that moment! It's such a crazy place we live in - suspended between reality and what we wish to happen. I love how you see the humor in this. Tina Fey's got nothing on you :).

Total 11 comments

From the time Billy could walk -- at about 9 months -- he's been falling over. He was like a little Charlie Chaplin, silently stumbling through one wacky pratfall after another. At first, I thought his big head was throwing him off balance. At nine months, most babies are all head and most aren't walking. He ran constantly, in this falling-forward-head-first posture that looked a bit like somebody trying to balance a pumpkin on top of a pole.

balancebeam

For a long time, I firmly believed that Billy had a balance problem. I was assured by multiple occupational therapists that the fact that he stumbled and fell frequently was a sign that his vestibular system was screwed up and he found balance difficult. His underdeveloped nervous system couldn't process the information about spacial orientation, leaving him constantly off-balance.

At the age of four, Billy still stumbles and falls frequently. But we're starting to realize that his biggest problem is quite simply looking where he's going. He'll be looking at some kid riding a bike behind him while he walks in the opposite direction and directly into a tree. He used to look at his feet while attempting to peddle a tricycle - and he'd drive it into the wall.

However, we got him a Razor scooter this summer and realized that when he wants to, he can balance extremely well. And when he pays attention, he doesn't run into stuff. I've mentioned here before that he can zip in and out of furniture, stop on a dime, and pump one foot up in the air behind him while circling the dining room table.

About a month ago, he also started a special needs gymnastics class. Last Saturday, the coach asked him to walk across the high balance beam. He did it, holding Dave's hand, without a problem.

Then she upped the ante a bit and asked him to kick as he walked across the beam. Again, no problem. Taking it one step further, she asked him if he could do the same thing, only going backwards. Everyone was astonished when he kicked his way backwards across the beam without a single stumble.

Never in a million years would I have believed he could be that good at something requiring that kind of balance. Never in a million years could I have done that. (At left, you'll see a video of Billy's first ever attempt on the balance beam. Unfortunately, we didn't get his most recent triumph on video!)

Naturally, we have to rely on experts -- doctors, therapists, teachers -- to learn how to best support our kids on the spectrum. But sometimes, I've found, I can learn the most simply by watching Billy. And as time wears on, I've started to trust more what I see with my own eyes and to challenge assumptions made on the basis of a short, or otherwise limited, observation.

Balance and coordination are common problems among autistic kids. But my child is as individual and unique as a normally developing child; his support/education/therapy needs to be carefully coordinated to fit him as an individual -- and that plan may, and should, change over time as he changes. If we continued to focus on Billy's vestibular system, rather than on strengthening his visual tracking, we could waste a lot of time. And fail to address a fundamental problem that could affect his ability to read, write ... and avoid trees.

It could be that Billy's nervous system has matured a lot in the past two years; I'd certainly like to think so. Maybe the Razor scooter has a miraculous effect on balance (Note: I do not actually believe this). Regardless, we're going to work on his visual tracking through use of simple puzzles, books and other hands-on toys and put a check-mark (for now) next to "balance."

And prepare for Olympics 2020!

(By the way, if anyone has any good suggestions for exercises/tools that help improve visual tracking, I'd love to hear them!)

Reader Comments

Vision Therapy

I've heard of alot of people that do vision therapy specifically for what you describe. We've not done it, but I think it involves alot of the visual tracking type exercises that you refer to. There are all kinds of theories about some kids not seeing well if they look straight ahead..just their peripheral vision is fully developed so they do some of that looking out of the corner of their eye. I've heard some people talk about depth perception issue which causes them to have the sensation of walking uphill so they always seem to be falling forward. I know people that have practitioners here, but I don't know how you find them or what they call themselves.

Interesting comments about the learning to move fast and use the eyes at the same time- there's that pesky vestibular system again! There is a reflex that connects the ears and eyes that helps us focus our eyes on something while our head moves.

For low tone and postural strengthening I like karate and swimming. Some fun games are animal walks, wheelbarrow walk, climbing on playground equipment or an obstacle course in your house, playing twister, carrying/pushing heavy items (groceries, full laundry basket), wrestling play...

Scooter Therapy

That's so interesting, Ginny Marie, because I feel like that happened with Billy and his tricycle. After he got the hang of looking where he's going while moving forward quickly, he got on the trike and pedaled away without running into the wall. We have yet to try him on a two-wheel bike. I look forward to that day with both excitement ... and dread :-)

Razor scooter

I bought my daughter a Razor scooter when she was four, and I think learning how to balance on her scooter helped her learn how to ride a two-wheel bike when she turned five! Since she was almost four before she learned how to pedal, I never thought she would learn how to ride a bike so quickly.

That gymnastics class sounds so wonderful for Billy...a perfect fit!

Balance and the Kid

@BigDaddy: Move over -- I'm going to need a spot right next to you guys ... and save me a cheeseburger.

@Joni: That's very interesting what you say about a child relying more heavily on visual sense when they don't trust other balance systems. That makes a lot of sense. I'm definitely going to try the balloon and bubbles, because those are two of Billy's favorite things in the world anyway!

@Jen: Too funny about the poor girl at the dance recital. I was like that as a kid too. I once walked out of high school chemistry and ended up head-first in a metal trash can because I wasn't looking where I was going. Let's just say I'm starting to see where some of Billy's genetic input may have come from ;-) But his "klutziness" goes beyond just being clumsy. He falls ALL.THE.TIME. Walking across a flat floor, he'll trip over his own feet. He's getting better, but we constantly have to tell him, "LOOK in the direction your FEET are going!" He's started doing this funny thing where he stares down at his feet and asks, "Where ya goin', feet?" Good question.

@Cheryl: That is just what I needed to hear. Billy was diagnosed with low muscle tone too. And like you, I didn't see that much change in OT. I'm hoping that gymnastics, which he LOVES, is just going to generally strengthen him, like you said you've witnessed. We're going to try swimming next summer, and I keep meaning to find out about a local horseback riding program. You've reminded me and I"m going to call tomorrow!

I Can Relate

Hi there, fellow Spring Chicken!

My daughter is a klutz! Like your son, she doesn't always pay attention, so she trips, or runs into things a lot. However, my daughter was a late walker. She didn't walk until 19 months because she had low-muscle tone in her trunk area. She still does, so she struggles with physical activities. We had her in OT for awhile, be that didn't seem to do much. I ended up enrolling her into a gymnastics class at a nearby place. Her teacher is awesome and has her doing things I never thought she was capable of! He says her strength doubled after just 3 classes! Over the summer, she went to a camp where she went swimming, horseback riding, and all other sorts of physical activity. She did great, and her gymnastics teacher saw another huge increase in her strength. Yay! Sometimes we just have to set the bar higher than we think is possible for our kids. They surprise us!

Sounds pretty typical to me...

Go Billy!! Since I haven't witnessed your son falling all of the time, I can't specifically comment. However, everything you mentioned in your post sounds so typical to me! My (typically developing) 3 year old is constantly running and falling because he does not look where he is going! I teach ballet and I witnessed a little 4 year old, holding hands in a line to walk to the stage for recital. She turned her head to talk to the girl behind her and...ran into a pole. She was so upset that she refused to dance. Her Mom did finally get her to go on stage, but she just stood there and did nothing! :)
P.S. I think my baby boy has some eye tracking issues, so I'm interested to check out Joni's suggestion!
BTW- Hi from SITS!!

How great that Billy found something that he likes! Interesting comments on the vestibular system. Amazing how motivation can change attention and balance! I always tell parents that listening to their gut should come first. I think you really keyed into those visual problems- some that are directly connected to the vestibular system and some work on their own. Things like looking at the bike pedals are often an over reliance of the visual system and an underuse of the other balance systems (vestibular & proprioceptive). Walking into a tree because you are looking the other way is just an attention thing! A good website for some vision exercises is eyecanlearn.com if you want to check it out (I used it myself when I was in vision therapy!). Playing keep the balloon up and popping bubbles are good visual tracking activites.

Total 11 comments

debbydowner

Pass the cookies. I need to hate some more.

I'm fighting a familiar super-villain this week: Hate. And his sidekick: Blinding Rage.

Hate kinda left me alone before I had kids. I disliked or was irritated by certain people – or more specifically, the things certain people said and did and the way those-who-will-remain-nameless block the whole aisle at the grocery store AS THOUGH NO ONE ELSE HAS TO BUY CEREAL!! (deep breath)

I guess I came pretty close after 9/11. Strangers are easier to hate, especially homicidal maniacs who murder thousands of people. But I was too consumed by deep sorrow and fear and confusion to be able to muster up the energy for a whole lot of hating at the time.

Because hating takes a lot of energy. When I really get down to the business of hating, I don't have the energy for anything else. I pretty much have to lie down and just hate full-time. And eat. I can hate and eat at the same time.

“Your policy has no autism benefits.”

This news totally flattened me. I am not someone who is good in a crisis; I get hysterical and completely fall to pieces and Dave is left with the job of putting the pieces back to together AND dealing with the crisis. Only there aren't clear-cut pieces like in a puzzle; supporting me in crisis is more like trying to scoop up a mud puddle with your bare hands. If the mud puddle can yell at you.

As I shared earlier this week, we're trying to get ABA therapy for Billy. While we can get speech and occupational therapy – because those therapists can use a medical code for filing – we are not entitled to behavior therapy, because that's not, they tell us, medical – at least not for members of groups with less than 50 members. If you're a member of a group with 50 or more people, the rules change.

Meanwhile, Billy has lately been showing a high level of anxiety and some aggression at times, which is affecting his ability to eat and sleep and function at school. More speech therapy is not going to help that.

Every medical expert we've seen has agreed that what Billy needs right now, what has the greatest chance of success, is an ABA intervention. And the earlier he gets that therapy, the better he's going to be at handling the inevitable crises and changes that come up in life. Essentially, the more therapy he gets now, the less he'll probably need in the long run.

I'm sorry. I don't feel very funny today. I feel guilty that I didn't somehow plan for this better. I don't know what we could have done, but I guess we should have sat down, before having a child, and gone over every possible outcome: “And if he has a genetic abnormality? Is that covered? What about TB? MS? Parkinson's? Ebola?” And then buy supplemental insurance for every gap in coverage we find.

There is a light at the end of the tunnel: My mom – who, by the way, is awesome in times of crisis, and it's probably her fault that I'm so useless because I'm so used to being so expertly cared for – got on the phone to Florida KidCare. That's the insurance that's available to all kids in Florida, regardless of their families' ability to pay.

They told her that, while we'd have to pay the full premium amount (about $120/month), autism is fully covered: ABA, speech, OT, you name it.

Now my question: Anyone out there have experience with KidCare? Is it difficult to find a provider? Any input would be greatly appreciated before we make a decision about moving Billy's coverage. If this works out, I will be the biggest proponent and advocate for KidCare in the Sunshine State.

Please stop back by tomorrow when I promise I will rise from the couch, dust off the crumbs and try to crawl out of my hate hole.

Reader Comments

We are currently in limbo with any kind of therapy for my son.
Our personal insurance doesn't cover it.
The state insurance has deemed that he is not bad enough.
So we are just waiting.
Waiting for him to get a whole lot worse. I do not know if we can handle much more worse as a family.
I do not understand why they do not want to do more preventive so that the child does not get worse.
So frustrating.

Stopping by from SITS.

Medicaid Home-Based Waiver

Do you guys have the Medicaid Waiver in FLA? I thought that every state had a form of it. Basically they waive the income requirements and your kid is on Medicaid...but there's no premium that you have to pay and you get $ that can be put towards ABA. That is how we pay for our program. We get about $15K/year. Some states are as high as $36K/year. I tried to do a Google search but couldn't find info for FLA.

Clarification

Sorry if I sounded like I thought all ABA programs were too limiting. I only looked at one program on one day. Although the Kennedy Krieger Achievements program is well known I'm sure there are many very different programs plus things have probably changed a lot since my son was pre-school age (he's in 6th grade this year). On that day I wasn’t overly impressed, but it also was tinged with sour grapes since there was no way my son was going to be able to get into the program. Also, my son's needs are not the same as other autistic kids. In the same way that I'd like people to not think they understand my kid because they know one example of a person with autism (usually Dustin Hoffman in Rainman), I don't want to say I know everything about ABA from a 2 hour visit 7 years ago.

Thank you all so much

Well, I'm out of my hate-hole, thankfully :-) And I wanted to say thank-you to all of you who do, indeed, know what it feels like to have your child denied insurance benefits. Whether it's for autism -- or something else unexpected -- it's scary and frustrating.

@aparent: Thank you for sharing your link. While I don't agree completely with your assessment of ABA, your articulate post reminded me that I *am* a firm believer that the best "therapy" in the world is what we, as parents, do all day every day: we love them, we support them, we work with them to the best of our ability. I am a firm believer, too, that relationship-based therapy is the most effective.

I used to think, like you, that all ABA was essentially "dog-training." Then I observed the work that an ABA therapist did with my son at school and realized that these therapists, like all of them, vary greatly from one to the next. Most ABA therapists that I've observed take a very relationship-based approach, realizing that any therapy not firmly grounded in the joy of the child is doomed to failure -- whether that failure is in its performance results or the child's sense of self-worth. I have NO time for anyone trying to break my unique child's spirit in the name of therapy.

We're exploring options and meanwhile, we're still doing what we're doing. I have been too focused on the problems Billy has had lately, forgetting to celebrate new achievements: he's been trying new foods at school, he's made a new "reading buddy" friend from the 4th grade, and he has been working very productively in all his speech therapy sessions with a new therapist. He's even slept through the night for the last four nights!! OK, so he pulled the fire alarm at school yesterday (yipes); some of that is just 4-year-old boy.

Instead of celebrating these achievements, I fell into the trap of mourning all over again. That mourning blindsides me sometimes. I see a neurotypical child do something that Billy "should" be able to do and I cry for a week. Some stimming behavior reasserts itself and I go back down the rabbit hole for a while, convinced that I'm completely ill-equipped to help him, that there has to be some magic bullet out there, that I'm doing everything wrong.

Eventually, I snap out of it. And usually, he's the one that snaps me out of it. It can be as simple as running to me with open arms and a big smile at school pickup (something else new that started this week). Or cuddling up with Willow on the couch and holding her hand. But thank you all for helping see me through this bout of self-indulgent wallowing. I'm back :-)

Hello, if your still seeking information regarding Florida KidCare please give me a call 1-888-352-5437x0 ask for Consina.

Thanks

Moms are Great...

I hope the KidCare thing works out...glad your mom found them!

Wendy

Hang in There

I live in Florida but know nothing about KidCare. The whole insurance thing is horrible. I've almost given up on them convering anything autism related. I wish I had some great advice for you - but I don't. If misery loves company, then I guess I'm keeping you company on this one. Hang in there.

Sorry You're Going Through This!

I hope the KidCare works out for you! Good luck!

Total 9 comments

INT. HOME OFFICE - DAY

bandit

Hi, I'm Bandit. Press 1 to automatically deny your own claim. Press 2 if you'd like me to do it for you.

MONTAGE: Dave is on the phone, on hold, for what seems like hours. We can hear the hold music playing on the speaker phone in the background. He leans back in his chair, drums a pen on his desk, eats chips, reads football news online, creates a chain of paperclips, etc.

SPEAKER PHONE: Major Health Insurance Company. How may I help you?

Slams his chair down and picks up the phone.

DAVE: Yes! Finally! I'm calling because we were told that you're denying coverage of our son's ABA therapy.

MAJOR HEALTH INSURANCE COMPANY: Policy number please.

Dave gives her the policy number, the group number, the social security numbers of various members of our family

(Looooooooong pause...)

MHIC: I'm afraid yours is a small group policy, and therefore, you have no coverage for autism therapy.

(Another long pause.)

DAVE: That doesn't make any sense. We pay higher premiums and have a much higher deductible than large groups.

MHIC: Your policy does not include any autism benefits.

DAVE: Ok, Ok. But he's been getting therapy for the past year and Major Health Insurance Company has been covering it.

MHIC: Not for autism.

(Another long pause.)

DAVE: But can you see that our son has been getting speech and occupational therapy?

MHIC: Yes, I see that.

DAVE: And you've been covering it?

MHIC: Yes, we have covered that therapy.

DAVE: Well, he's autistic. That's why he gets the therapy. Why can't he get the ABA therapy his doctor recommends?

(Another long pause.)

MHIC: The code under which speech and occupational services were filed was not autism.

DAVE: It wasn't? Well, what was it? The code?

MHIC: I'm sorry, sir, but I'm not at liberty to disclose that information.

(Long long long pause. We think we can hear the sound of a man putting his head through a wall in the background.)

DAVE: Let me get this straight. Billy can't receive therapy for autism. He can receive – and has received -- therapy if we call it something different which has a different code. But you can't tell us what that code is.

MHIC: I cannot disclose the codes for which services have been filed in the past.

DAVE: Can I guess?

(Semi-long pause.)

MHIC: Sir?

DAVE: Is the code ABC123?

MHIC: No, sir --

DAVE: DEFEXYZ?

MHIC: Sir--

DAVE: That's not it? Am I getting warmer? Is it the number 42? Is it my phone number? Is it the Da Vinci Code?

MHIC: Sir, I'm afraid --

DAVE: WHAT. IS. THE. CODE????

And that's when the hold music starts again ...

My fellow autism mom, Lynn over at AutismArmyMom, wrote a hilarious and excellent post about the recent experiments in using a Robot named Bandit to teach autistic children. I don't even have to make fun of the concept of robot autism therapists, because Lynn has already done it so well and said everything that needs to be said on this subject.

But as I said to her, rather than use robots for autism, maybe they could hire them to answer the phone at Major Health Insurance Company. I could send Bandit off to work each day. In fact, if my robot was earning a paycheck as a customer service representative, maybe I could afford ABA therapy for my son.

A bit of serious advice to anyone dealing with Major Health Insurance Company: Whatever happens, don't let them drive you crazy. Their mental health benefits are terrible.

Reader Comments

AGHHHHHHH!

I hate health insurance companies! Get this...our health insurance company does cover speech for autism. It says so clearly in their brochure of services. But they were refusing our claims because our daughter was getting her speech services in a group setting. Her issues are pragmatic--conversational skills. She doesn't benefit from one-on-one with a therapist. She needs to converse with peers. The brochure said NOTHING about group settings NOT being covered. In fact, it's MUCH cheaper, so they should have been thrilled. We had to fight this for a year. My husband had to have both the speech therapist and Lynn Koegel (a nationally known autism expert who heads up the autism center at U.C. Santa Barbara and has written several books on autism) write letters and the efficacy of small group sessions. They STILL refused because their "expert" said there as no proven research in this area. So, we had to appeal, and resubmit our experts' claims. We FINALLY received our $800 reimbursement last week. My husband looked at it and said that it SO wasn't worth the time and effort everyone put in to get the check. It's crazy! The health insurance companies just hope to wear you down. And this is for a service that was COVERED per their literature.

We have to battle everything every step of the way. I was worried when I read your post that they would stop covering your speech and OT since they don't cover autism. You have to tread very carefully! You don't want them to change the code to autism and stop covering it.

Insurance companies

You hit the nail on the head: They want to wear you down. They can afford to wear you down. It costs them nothing. I'm glad to hear you finally got your reimbursement but it is CRAZY and ILLOGICAL that you have to fight so hard to get it. Particularly, as you point out, it was actually cheaper for them to pay for the group communication therapy. (BTW, Billy's in Group as well, and our insurance doesn't cover it either. Grr.)

We *did* receive a different code/diagnostic label from our neurologist that we gave to our ABA therapy group on Friday. Stay tuned to see if that helped or not. But like you said, I'm terrified that the upshot of all this is going to be that they don't cover anything.

Health Insurance can SUCKIT!

I cannot begin to explain how much I hate health insurance.
For YEARS geneticists have wanted to test my 2 boys for various genetic disorders they believe may have played a role in their diagnoses of autism. Fragile X, to name 1. That little test costs $1200! However, our health insurance refuses to pay for it because they say the test itself is only good for information and cannot actually change anything or provide any benefit to the boys health.

I believe I may have reached through the phone and throttled that customer service rep. that day.

Ugh

Had the same exact problem years ago. I think I reacted almost the same way your husband did. I was able to figure out the "right" diagnostic code by asking the therapist who had previously been successful in getting our claims paid. It is worse than an episode of the Twilight Zone dealing with these institutions.

I *am* the Bandit!

Thank you, citymouse, for the heads up on the law! That is very good to know if our magic code doesn't work tomorrow. And I'm so glad you found me through SITS! I made so many great contacts this past week; now I'll NEVER get anything done, because I have so many great blogs to read :-)

Lynn: I'm going to tread lightly here, because I know you're right -- we could end up with the big fat Zippo. Dave and I both have a terrible inability to keep our mouths shut when faced with illogic. And the whole short-term/long-term condition weirdness is as stupid as the logic behind giving less coverage to those of us paying more or not giving us a code that our therapist gave them to get them to cover ... ARGHHGHGH!!! (BANDIT MAD!!!)

I just wish this country could pull its collective head out and decide that children and old people should get anything they need to get better. That's about as political as I get, but I'm pretty adamant about it. There shouldn't be any kids with autism unable to get therapy, and there shouldn't be any old people watering down their milk so that they can buy prescriptions. Dear lord, how did I make a detour on to this rant? I'll meet you in the bell tower.

Insurance companies

Bandit must not be used for evil purposes...Bandit will rise up and revolt! I was going to say what Cheryl said...you have to be careful not to draw attention to the coverage that you ARE getting because you are getting it most likely under an apraxia or global delay diagnosis code. If they smell the old 299.0 you might not get anything. Luckily, the mental health and medical sides of these MHIC's don't usually talk to each other. Here's the ultimate irony: you are only supposed to get speech and OT covered if the condition is rehabilitatable (totally not a word) and not if it's chronic like autism. That's right: Short-term condition = all the coverage you want, long-term condition = goose egg. Makes sense, right? I need to fetch my sniper rifle again...

Really???

Stopping by from SITS and I love your blog.

In a former life I handled insurance billing. Your insurance company cannot refuse to tell you that information or even supply you with a copy of the claim if you request it. Next time that happens, tell them it is a federal offense to withhold your PHI (personal health information). The Office for Civil Rights is responsible for HIPAA and this falls under it.

MHIC

Thanks very much for the suggestion, Mary! You are absolutely right; the people who know us and our son are MUCH more likely to want to help, and actually, the new ABA therapists have been bending over backwards trying to help us.

We tried actually going to his old speech and occupational therapy clinic -- we've recently changed locations. But we got put on hold/transferred so many times, that we went to the neurologist and bingo! We got the code. Or a code. We'll see if it's the magic Da Vinci code on Monday. If not, we're gonna go back to the speech/OT clinic.

The fight rages on ...

Bandit is already there.

The part Mandy didn't mention is the wildly frustrating 20 minutes I spent speaking to Bandit BEFORE I actually got through to a real live person. Bandit wants to know my address, social, policy number, etc etc. Bandit does not understand a British accent, so I have to repeat everything again and again, before eventually resorting to my best Redneck impersonation, which of course works immediately. I am calling from work. All my co-workers now think I'm insane. And when I do finally get handed off to Bandit's living side-kick, I am asked all the same questions again. Unbelievable....

Correct me if I'm wrong...

...but I think the therapist provides the code in order to charge the insurance company. And I'll bet you if you talked to your therapists, they may not have used the autism-specific codes BECAUSE they knew / found out that MHIC wouldn't cover it, so they used something similar and not autism-related. AND, I bet if you talked to them - they'd give you the code, for future reference and use.
I find that the people directly serving me, working with me, and having a hands-on role in my life are MUCH more receptive and helpful than the anonybots with headphones on the other end of the hold music.

*EDIT* Just looked at other comments, and saw you've already gone this route - good luck!!

Total 10 comments

Quite a few mom bloggers took a hiatus, or at the very least slowed down their productivity, over the summer. That's one of the reasons The SITS Girls are hosting a Back2Blogging challenge this week. Many of our kids are in school (I'm writing this while Willow naps) so it's time to build some writing momentum.

Electrolux-Set

I want them!! (Thelma and Louise)

AND we get entered into a sweepstakes to win the lovely ladies directly to the left, Thelma and Louise. As my dryer just broke and I've been hanging laundry out to dry all over the house, I would really like to bring either Thelma or Louise (whichever one is a dryer) into my home.

So each day there's a different writing prompt: Today, we're supposed to republish our first-ever blog post.

As soon as I read that, I got kind of a funny feeling in my stomach. I remember that first post. I actually wrote it long before I had a blog. I can't even remember why. My son's autism diagnosis was still new, and the “A” word still had a bitter taste in my mouth:

“Saying the A Word”
(Posted August 2009, written January 2009)

For the past 18 months, we've been chasing a diagnosis for Billy's delays in speech, his differences in motor function, his quirks of personality. My emotions have run the gamut from an extreme skepticism that there's anything "wrong" with him to a growing fear that our early doubts are entirely justified. I've worried, cried, screamed and pleaded with insurance companies, prayed, laughed at myself, and started the process all over again.

Actually, if I'm completely honest with myself, what I've been looking for the past 18 months, is an expert who will say, "Your son is definitely not autistic." I would demand of the therapists and doctors, "He's not autistic, is he?" because to me, that meant the end. That I would lose my son. That he would slip away from me and lose his smiles and affection and love of life -- all of which he has in spades.

S_FB_MAndiBilly

Ignoring my crazy eyes and too-long sister-wife hair, the point of this pic is that it was difficult back then to get Billy to look at us.

Well, Billy's three now, and he's not slipping away -- but some of his differences from his peers have become more apparent. He's a bright, beautiful, extremely funny boy. He has an amazing memory and vocabulary. He can answer the question, "What is that?" almost every time. He recognizes animals, plants, people, the planets, food ... but he can't tell you what he did today, what he likes to do, what his name is. He doesn't ask any questions. He spends most of his time repeating entire books, the dialog of a whole cartoon, the question you just asked him.

I know what you're probably thinking: "All kids develop differently. Don't worry about it. Let him develop at his own pace ..." Believe me, I've heard it all. I've said it all to myself.

He can sing beautifully -- perfect pitch and rhythm -- has a catalog of over 100 songs that he knows, and he loves to dance. But he'll have a complete meltdown if you touch his head or offer him anything to eat except macaroni, oatmeal or chicken nuggets. A symptom of his sensory processing problems is his *extreme* clumsiness. It's like he's always looking at where he wants to be, rather than where he is, and he'll fall over the huge coffee table -- which he doesn't see -- in his desire to get to his ball on the other side of the room. He didn't see the edge of the slide, and he fell off and got himself five stitches.

It's not traditional autism. Or at least what I've always believed autism to be. He's loving and affectionate and emotional and funny. But communicating is incredibly difficult for him. It's like he has all this information locked inside him, and he can't make sense of it. So what comes out, instead of what he wants to say, are these things that he's memorized.

So on the advice of a neurologist, we went for an MRI. It was a harrowing experience. The drug they gave him to sedate him had hardly any effect, and when they put in an IV, a meltdown of Armageddon proportions commenced. The results of the MRI: nothing physically wrong. So we get our diagnosis: autism.

I asked our OT, "Is that what autism means now? A lack of brain tumor or seizure disorder or stroke? None of that and you're suddenly autistic?"

She was kind when she responded to me. "No, Amanda. There are benchmarks for communication delay, motor problems and behavior issues -- and Billy meets all of those."

Oh. OK.

I can say it: My son is autistic.

I'm lucky. He's only mildly autistic. Most of his problems are sensory-related. And she's quick to point out that with therapy, he probably has a very good shot at a complete -- or near-complete -- recovery. That's a word that didn't used to be used with autism.

I don't know why the word bothers me so much. It doesn't change the person that Billy is. He's more than a diagnosis. He's a fantastic boy that any mom would feel lucky to love. I guess it's kind of like the way I don't want anyone to know my weight. The number doesn't make me fatter, but I'm not exactly going around with it scrawled on my forehead.

Every day I question every instinct I have, every treatment decision I've made for Billy -- every decision I make full-stop, for both my kids. But I'm starting to see that that's just part of being a parent.

But the A-word doesn't scare me any more. Much.

___________________________________________________________________

S_Billyalien

It's still not easy, but sometimes he loves the camera! And the camera ALWAYS love him.

I first posted this in August of 2009, but I had originally written it nearly 8 months earlier.

Now I read those words and the anger and fear is familiar to me, but I don't feel that way any more. My recent post, “Life is a Spectrum” is a reflection of how far we've come and how we managed set down a lot of those burdens of anger and stress along the way. It's such an accurate reflection of where we are now that I decided to change the blog to that title.

A few thoughts:

I would never use the term “mildly autistic” to describe Billy any more, nor to I talk about “recovery” any more. You don't "recover" from a differently wired brain. Billy is autistic. His brain is wired differently, in some amazingly wonderful ways, as well as some ways that cause him communication challenges. He's very highly functioning, but that makes him sound like that fancy washer or dryer and doesn't do justice to the fascinating child he is.

I realize now that saying Billy didn't have “traditional autism” was just my way of showing how ignorant I was. There are as many ways to be autistic as there are to be human. And my loving, funny, brilliant, gorgeous, HAPPY son is living one of them.

Also, I now know how much I weigh. Once you've faced your greatest fears for your children, stepping on the scale isn't nearly so scary any more.

Thanks to SITS Girls, Standards of Excellence, Westar Kitchen and Bath, and Florida Builder Appliances for this little moment of time travel. It's nice to be reminded of how far my brave little man has come.

Reader Comments

The A-Word

I remember when we used to refer to my son as "mildly" autistic or use terms like, not "traditionally" autistic. It only took you 18 months or so to realize those terms are kinda silly and there is nothing to be afraid of the words, "My son is autistic." Congrats. It's funny, nowadays I sometimes use words like "profoundly" or "significantly" to describe my son's autism. Strange how 12 or 13 years change your persepctive. If you win the washer dryer, I'll be swinging by to run a couple of loads.

Comment

Wow what a touching first post. I am sorry you had to go through all of that but I am glad to hear he is doing much better. Look forward to following your journey!

Time Travel

Breathtaking post, Amanda. I say you've earned that washer and dryer.

The A Word

You've come so far so fast. I used to say all of the same things. It's good that you wrote that early on so that you can go back and see how far that you've come. Recovery is not the right word, but it seems like Billy has a great prognosis. All we want for them is to be able to live independently and be a fully functioning (just like the W/D) member of society. If that happens, I don't care what they call them.

Total 4 comments

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