Happy Halloween

Gabe's wearing his Dinosaur...err...Crocodile costume!!!! Yahoooo! Candy is Gabe's ultimate reinforcer, besides Fritos.
Beautiful Boo is representing the magnificant and magical unicorn.

Shake it off

I feel like a wet dog, stopping to shake off all the water from my coat. The anxiety about the future was keeping me from moving forward, my coat felt very heavy. Now, I just want to go and play. Maybe a good game of fetch, followed by a nice rest on a pillowy bed. Ahhhhhh. This dog's done with the days of mated, smelly coats. I can't promise I won't get wet again, but today is a new day and who knows what the future may bring? Gabe has proven to us again and again that the unbelievable is believable and a cookie is not just a cookie.

Check out THE CHUB FILES to see just how far Gabe has come.

Not Just "Nope" Anymore

Today I was scared.
I haven't been this scared since Gabe's initial diagnosis. We have only until December 20th to get his noncompliance under control. After that it just me, no qualified therapists to manage the behavior at school. Twice monthly meetings with a Behavioral therapist and me the rest of the time.

For two hours this morning ,Gabe refused everything while at his ABA school. This is the same school with the same therapists that he has loved for over a year now. He would not comply with anything or anyone. There was screaming, crying, thrashing, restraining.....
As I watched threw a curtain, Gabe was removed to a private room to de-escalate, all I could think was, What can I sell that would enable him to come back to this program in Janurary? What am I willing to do to see that he is able to receive the therapy he needs to be able to work through his noncompliance successfully? My first thought was figure out a way to empty all of our retirement accounts, at a penalty of 34%. It still would not be enough. Then I looked down...and I noticed my wedding ring. What use is it to have something so beautiful resting on my finger while my son needs help so desperately? I started calculating what a pawn shop would give me. I tried to think of anythng else that we have of value....jewelery, antiques, bonds? My most valued possessons are my family. There isn't anything else.

So, that left SD's parents, whom we swore we would never ask for money again. Swallowing our pride, we accepted their money for this last semester and made that promise. I wondered if they would notice I no longer had a wedding ring? That all our accounts were empty? That Christmas this year would amount to presents to them, but none for us? I started to get resentful and angry, not just at them but the school system that would see this as a perfect opportunity to medicate Gabe's undesirable behavior, the insurance company happily shaking hands with Big Pharma while another "client" is sent their way and at myself for not being able to give my son everything he deserves. I was so beside myself that I could'nt cry. Our path had changed so rapidly before my eyes that I felt like a stunned deer standing like an ass in the middle of the road while head lights were coming closer and closer mumbling, "They're soooo perty!"

I'm scared, I'm lost and to top it all off, broke, not a dime in my pocket to make the changes that need to be made.

The Files Have Been Opened

It is still a work in progress, but the following is a link to my other blog dedicated totally to Gabe.





The Chub Files

Let me know what you think. Thanks...

What Happened To Fall?

This picture was taken fall 2005

It seems that every weekend this fall has been taken by bad weather or sickness. Rain and Boogers. We're anxious to get out and enjoy all the great things about fall, orchards, pumpkins, doughnuts, cider, apples, corn mazes, leaf piles, bugs, gardening.... Last weekend was nice, one of those days was spent cutting down two of our trees due to disease. What amazed me was that the tree that looked bigger was actually the smaller of the two. Boo and Gabe loved jumping from stump to stump. Our neighbors and us have lost five trees so far to this disease.

I wonder if today will be a better day to finally go get SD's pumpkin at the pumpkin patch? Boo, Gabe and I will be going to the Orchard to get ours this Friday. But, sadly, it sounds like the weather maybe raining and cold again. Gabe also has a cold with a wicked cough. It seems that now that he is older, the colds go straight to his chest. We use a nebulizer a few times a day. He has surprising raised his white flag and allows us to use it for five minutes on him every five hours. His breathing problems at birth may have finally caught up with him.

Wow, this post is as exciting as the weather outside!

There's just not much going on.

Hey! Over Here Super Daddy!

A couple nights ago, while laying in bed, SD (Super Daddy) turned to me and said,

"So, next semester we will be putting Gabe into "Public School S" in the district I teach in?

I paused, "Ahhh....No."

"Really?" he answered surprised.

"I'm not touching a public school with a ten foot pole in regards to Gabe. Not gonna happen." I swiftly turn the page to my current Newsweek.

"Huh. How come?" he gently asks.

I must admit that the last time we discussed Gabe's educational future, we had come to the conclusion that "Public School S" would be beneficial. In the last few months, I have withdrawn even further away from the idea of public school.

So, I began with this, "Special Education is anything but special. It is not fair and it is not appropriate, in fact, it is hardly anything at all but a day care to drop your child off at while the district reaps the funding, leaving those children without adequate services or services at all. IEPs serve only to keep parents complacent with the idea that they are helping, when in fact, it is not a partnership. I refuse to be part of the charade." Then I got off my pedestal. (I don't mean to offend anyone with the decision they made regarding their child and the public school. This is just where I am at with the public school system of which we are forced to work with in Michigan.)

"OK. Sounds good. What are the plans then?" He looked over at me again.

I felt bad. How would he know what I had been thinking. He has always been supportive of my ideas, knowing I have spent many sleepless nights thinking about every possible solution. If only he had read some of the many blogs I read each day describing the struggles, feelings of hurt, disappointment and anger from parents after an IEP, letter from the teacher or administrator that dismisses not only them but their child with a blink of an eye. He would've known that I was no longer in the spot where I left him standing.

"After Gabe's ABA School ends at the end of December, I was thinking of continuing to send Gabe two days a week to his current private preschool that works specifically with speech impaired children. Three Days a week, we would continue Gabe's ABA Therapy at home with me teaching. He would also return to speech two days a week. We could do more enrichment activities, like storytime at the library, playing at the park and just spending time together. Gabe and I missed out on that due to his early diagnosis and early intense intervention with ABA Therapy. " I said looking back at SD.

He put his Harry Potter book down on his chest, and replied, "Sounds like the best plan for Gabe."

Thanks for meeting me over here SD. It's kinda like the furniture, you never know where it will be when you come home.

.

BeCalculatingBeStingy

With all the facts in place, I have to admit that there is a slim chance we will be reimbursed. They have set so many road blocks. Each turn I took, they had meticulously laid a foundation that breeds failure for coverage. There was nothing that we could've done, not a referral, nothing, not one single thing that would have lead us to receiving coverage for ABA. Every path lead to the following roadblocks...

-No coverage for out of network mental health provider, referral or not. Has anyone found an in network ABA Therapist?

-Even if Gabe's school agreed to work with us and become an in network provider to work with BCBS's separate company (our great plan *sneer*, hands over all mental health claims and services to another company) it could take a year before they are considered in network, long after our claim has expired for reimbursement.

-Let's just say for agruement that hell froze over and BCBS reimbursed us for Gabe's ABA Therapy....The maximum we would get from our plan would be $2,000 per year out of the $24,000 that we have already spent this year alone.

- I found out who the mysterious case manager is....It's BCBS's solution to not having to deal with Mental Health Care. It is a company rather, that would work with the mysteriously unavailable in network provider that delivers ABA therapy services at a sweat shop pay rate. Where are those people?

-So, I thought I would then send Gabe to an in network psychologist that would refer him to an out of network psychologist (His current ABA therapist) and then happily receive my long over due rate of 90% unlimited services due to medical necessity and a happy stamp on my beautiful referral. Nope. My Mental Health Care Plan does not accept referrals for out of network doctors according to the service rep. The language in the contract is vague at best.

-BCBS.....You are sneaky. Those execs must be paid very well. How do they sleep at night knowing what they know?

That is to name only a few of the sordid tidbits left for us to pull our hair out on.

Where do we go from here?

- New plan.....New focus - Can't say what...but it's juicy. Will it work..not sure, but it's worth a try

- What's funny..not so much in a "HaHa" way, but more in the pinch the cheek and say sweetly, "You're so silly BCBS!" As parents, we will invest all we have in our children, no matter the cost or time. This whole appeal doesn't put me out, it's such a small thing on my to do list, but it's there and my child matters. That's where they fail....our love and dedication will surpass their need to draw out appeals, send irritating letters, because in the end I still have the drive to do what's best for my child and they will have even more parents like me cramming their faxes with paperwork. So there....

- I know I am right. Everything I believe about what I am doing is right. I don't need an insurance company to validate what I already know is valid. I have already won.

Just a few thoughts for today....

Just A Few Words Before I Can Peacefully Start My Weekend

Autism is not a mental health disorder.

Say it with me BCBS.....

Neurobiological...

Good...

And again...

Neurobiological

AGAIN!

Maybe with some more practice.

Why do we have to pass a law that would state the obvious?

Who Are You?

I never put too much thought into "when were you born" psychoanalysis, but then I came across this site and ...wow

Your Birthdate: March 28
You have a Type A personality so big it makes other Type A's shrink away in shame.(I am Type A, but not that big)
You never shy away from adversity - and you love to tackle impossible problems. (True)
Failure is not an option for you, and more than a few people are put off by your ego. (True for #1 and Yikes! for #2)
You tend to be controlling, and you hate leaving anything up to chance. (Sometimes..more of myself than others....I strive for perfection, BUT only in certain things. The rest is normal, I swear.)
Your strength: Your bold approach to life (True )
Your weakness: You don't accept help (True, but has changed considerably since Gabe's diagnosis)
Your power color: Bronze (Really?)
Your power symbol: Pyramid (Huh..)
Your power month: October (I love fall)

What about you?
Go see at.....
http://www.blogthings.com/whatdoesyourbirthdatemeanquiz/

Thanks for the cool site Karmyn at Dreaming What Ifs...(http://klraisldreamings.blogspot.com/)

So Not Surprised

Got the call from BCBS.....Denied.

I would love to go into the details, but am choosing not to until the claim is settled. I am waiting for the official written reason for the claim being denied, sometime this week. Then, on to the appeal.

Bring it on.

One Ticket Please... To Crazy Town

These past few weeks I have been busy, very busy. Almost as if I was a squirrel gathering and burying nuts, building a nest that will ensure a safe journey through winter and of course, putting on my winter fat. Except, I'm obviously not a squirrel, but my gathering and burying could be compared to my constant faxing and phone calls to our insurance company and doctors, my nest is always challenged by my growing children and well, my winter bulge happens to mysteriously appear during very stressful times. Ice cream is at a premium, but my daughters birthday cake has leapt into 1st place as a necessary sedative at the end of the day. Where is the end? I am anxious to get there, nuts or no nuts. I need an end.

My claim has now passed through to the fourth level in my insurance company. It was passed from the customer service agent to the auditor, to the team of managers and now to the Medical Advisory Commission. It has take an entire month to know.....absolutely nothing. One thing I know is that out of all 6 doctors documenting in their evaluation that Gabe should receive at least 25 hours a week ABA therapy, half in network from a neurologist, pediatrician, doctor from a leading university, that they, BCBS, are trying to find a loophole in the one doctor's BCBS's out of network referral. Ah yes......that damn referral. You think you have got all your ducks in a row, turn your back and one looks cross eyed and an amazing amount of money goes out the door, not in your direction. I thought my parents expectation of being perfect was daunting....

So, I am waiting for the Medical Advisory Commission to rule on it and I should know by Thursday. I know it will be no and ...That's OK. I am already 4 steps ahead and am planning my appeal to the State of Michigan, who will be the "outside party" who evaluates appealed claims outside of insurance companies. BCBS will say no about three times, me appealing each time, then a new slate and a new appeal occurs with the state, hopefully in a couple months. I kinda want them to say no, just so I can make a point. So, my son and I can be heard in a forum not swayed by the insurance company and their shareholders. I just have to hope that the person that evaluates our claim from the state did not attain their job placement due to a shake of the hand with BCBS. Who knows? We're crossing our fingers, toes, legs, arms....cats legs.....you get the picture.

Meanwhile.........Gabe has been talking even more. His tone at times is "normal". Normal!!! I wish I could post a UTube short movie showing Gabe's high pitched talking. It is the one thing that really makes him stand out. It's common that children with speech difficulties that see a female speech therapist to mimic the tone that their therapist uses, especially if they are Autistic. Gabe is very literal, he will repeat something exactly as you said it. If I say it high, he says it high, low he low. BUT, now he seems to be finding his voice. It mostly comes out when he is mad at me. Here's an example, I was upstairs the other day grabbing something before taking both kids to school, and I hear Boo yell, "GABEY HAS EGGS!!!!GABEY HAS EGGS!!!"
"Eggs?"I thought to myself.....like the plastic Easter eggs? Surely not.......
As soon as the thought crossed my mind I was already at the bottom of the stairs starring at Gabe , who was sitting at the kitchen table carton of eggs in front of him.
"Eggs." He smiled at me.
"Oh no, Gabey we do not play with eggs sweetie." I take them and put them in the fridge. He has never done this before and what is the deal with eggs? What exactly was he going to do with them?
"EGGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!EGGS!!!!!!!!!!!!!!! He screams, tears in eyes.
I turn off the TV in order to direct him into the other room with Boo and away from the fridge.
"MOMMY! I WATCH BIG RED DOG!"
Clear as day.....perfect variation of tone. I stopped dead in my tracks.
"It's on in the other room." I say stunned.
He gets down off his chair runs in the other room.

I just heard my son.

It's hard to explain what it feels like to hear or see a glimpse of your child within their disability (Gabe's speech). It's the same beautiful view that you see everyday with them, but right there, to the left, you see the most amazing rainbow. That's the only way I can describe it.

My First Fax

I faxed 15 pages of "referrals for ABA Therapy" from 5 doctors in and out of network dating from the day that Gabe was diagnosed March of 2005 to an associate at BCBS. When I called to confirm this associate had received the fax, I was met with a surprised tone in his voice. I then came to the conclusion that he had definately underestimated me.

Stay tuned for the "Plan B" referral, detailed explanation of the code used for treatment that BCBS provide (Again, "Why do you provide codes that you don't know what they mean? If they are too vague, maybe you need to create some more specific codes for doctors to use."), my 2nd Fax experience (Yippeee!) and (Oh Yes!) The Preauthorization Request!

"Oh! Get out!...My life is so much more exciting than yours!"

Personal Pronouns are awesome

After going to see our pediatrician, I normally stop at Burger King for small fries (wheat free) for Boo and Gabe. Saturday we had an appointment, because of a cough Gabe had. SD and I decided to go to a park instead since it was too early for fries."Let's go to the park!" we cheered.

"Want French Fry"(pause)

"Go McDonalds"(pause)

"Eat their food"(pause)

Eat their food? THEIR! Did I hear a THEIR?!

Gimmie a "T"...Gimmie a "H".....Gimmie an "E" ......Gimmie an "I"....and an "R"

YEEEEEEEEEEEEEEEEEEEAAAAAAAAAAAAAAAH Gabe!!!!!

Wow.

BCBS

Do you have a referral from your doctor?
I don't need a referral with my program.
Oh, but you do.
Like a referral off of his notepad?
No. It is a special referral form that BCBS needs that is filled out by your doctor stating that they are referring you to an out of network doctor.
No one has mentioned this to me before and I have been calling customer service for over a year now about this particular doctor.
Did you read your handbook?
I asked before for BCBS to send me any information that they found would be helpful to me concerning my circumstances and they said that there wasn't any.
Well, we can still get the referral written.
What will it do?
It will cover 90% of your costs to this out of network provider.
90%??????!!!!!!!
90% of the $10,000 we have already spent???!!!!!
Well.....not exactly.
Huh?
It would start from the day that the referral is written and can not be retro active.
I almost threw up.

God help the next person who says this to me...

I'm calling to see what services you offer for children with ASD?
That depends on what they need.
OK.....
What do you typically offer?
What does your child need?
Okaaaay........(Do I Insert the magic word here?)
What services do parents who have a child under the age of five with ASD typically receive through your program?
It depends on what they need.
What about_________?
No.
What about________?
No.
Alright.....(MUST guess better)
What about________?
No.
What about________?
No.
What about________?
No.
You do help children with ASD..right?
It depends on what services your child needs.
I see that you do intakes. Can I bring my child in for an intake and discuss possible services then?
Yes.
(Huh. I gotta "yes".)
We have this date open.
That sounds good..
But, we'll have to call you to see if she will be in that day.
Huh?
Your scheduling an appointment on a day that you do not know is actually available?
She'll call you in a few weeks to confirm.
Really?A couple weeks?

Yah...
Huh..
Okaaay....
I'll have to call back later.

Gotta love those agencies that claim to help children with their clever use of double talk and underlying tone of we really don't care.

Flip, Flop, Flip, Flop, Flip, Flop

I know summer is almost over and you would

even be pressed to find one, dirty, lone, sad flip flop at Target,

However.......

in our household, this is a momentous occasion!

Gabe has mastered the art of flipping and flopping! The click and clack of this strange beach attire. He can maneuver without shuffling, snap it against his heel, and even travel two houses over from ours for a birthday party.

I was beaming with pride today. No more nice leather (Are they? Or is pleather?)sandals getting ruined by wet sand and lake stink. Here we come flipping and flopping as a family. To conquer the beach without sacrificing good foot wear!

There was only one incident at the birthday party, well two, but one was not a big deal the other was kinda funny.

The first is Gabe trying to connect with other children (Not a big deal, just one we are working on). While sitting at a small kids size picnic table, Gabe pulled up his shirt and moved next to the boy his age, saying in a high pitched voice..."Tiggga..Tigga.." ,which translated without the excitement was "Tickle, Tickle". The boy Gabe's age turned, looked briefly at him and I swear I saw him murmur to himself," There's no place like home....there's no place like home." Personal space is sometimes an issue with Gabe.

After the swimming in the baby pools, running through the slip and slide and having a blast, it was time to wrap it up and go in and open presents.

BUT, Gabe would not get dressed. I totally understood his need to want to stay outside, I mean, who really wants to watch someone else open up gifts of cool toys that you can't even play with? But, since Gabe's school is on vacation and he is home more, I have been extra vigilant at following through. Without his normal schedule, he has been testing boundaries. So, I said that he had to get dressed or we would go home.

Still no clothes on.

I let the moms there know that Boo was staying and I would pick her up soon, but Gabe would have to go home. The moms nodded with understanding and a look of May the God of dressed children be with you and I picked up Gabe and began the walk towards our house when I hear....

"(Boo) SAVE ME!"

"HELP ME (Boo)!"

"SAVE ME!" Gabe is shouting as if I am taking him to the guillotine and Boo is the only person who can pardon him from this terrible fate.

Incredible. This is actually a game we play with the kids where we pretend to "capture" Boo and Gabe and one of them has to save the other. Let's just take this moment and applaud Gabe's remarkable skills for generalizing what he learns.

Needless to say, while sitting on the front porch steps, Gabe gets dressed and we return to the party where he gets to hit his first Pinata.

Another amazing day.

The New Fall Fashion

"PRETTY-FUL PINK!" says Gabe.

In his PJ hand-me-down pants from Boo.

Does anyone else hear "We Are The Champions" in the background?

Being Gabe's Big Sister

At the playground today, Boo was surrounded yet again by a new fan club. She is such a social butterfly. I asked her once if she had ever played with anyone she didn't like, she responded with, "I like everybody Mommy." She has the purest soul I know. I wish someone like her had been around when I was growing up. She would've been the friend I had always wished for.

As the group of four began planning who was going to be the baby dog, momma dog etc., Gabe spots Boo with her friends and starts on foot in her direction.
"Hi (Boo)!" he waves then sits with the group.
I hover near, but out of sight. I want to see him in a true social setting unaffected by my intervening.
"Hey!" the oldest girl shouts,"This is only for girls!"
Then Gabe smiles at her.
"Ok," she melts a little," maybe he can be the daddy dog."
Then she approaches him. I wonder how this is going to pan out. Will he "hear" her or tune her out as someone that is not typically in his frequency.
"Hey! she walks up beside him. "You can be the Daddy dog."
No response. She's right there next to him. Gabe has his face situated next her and to the pipe that you speak into,echoing out somewhere else in the playground.
Say something Gabe!

"YOU CAN BE THE DADDY DOG!" She shouts.

Still nothing.
My stomach turns.
I put on my cape and fly in from nowhere.
"Hey Gabe! She wants to know if you want to be a daddy dog?" I turn him to face her.
Nothing. Then he smiles and runs away.
"I guess not, maybe later," I laugh.
The girls shrug it off and so do I. Practice..that's what it is all about...

About an hour later, the girls have themselves playing dog again under the slides and Gabe decides to run over and say "Hello" to Boo.
"It's daddy dog!" the leader of the group declares. Ready to include him, Gabe turns and walks away after his greeting.
"That's my brother," Boo says.
"That's your brother?" the leader questions.
"Yeah. He doesn't understand," Boo explains.

He doesn't understand. My heart sank. What did Boo mean by that? Does she know? Can she tell? Is it all making sense to her now? The long meetings, Gabe's school, all the speech therapy, not answering all the time?

Before SD put Boo to bed tonight, I asked her for a hug as we watched Gabe's speech tape. Every week I watch two 30 minute taped sessions of Gabe at speech with Dr. Karen. I told her about how Dr. Karen helps Gabe learn to talk.
"Look Boo, Gabe doesn't get the ball [to the toy] until he uses his words to ask for it ."
"Now he is practicing saying long words," I smile so proud of him.
"Co...co..nut" I practice with Gabe on the tape.
"You say it," I encourage her.
"Co..co..nut!" she pronounces perfectly.
"Good job!"

The tape starts to come to a close and I turn to Boo.
"Boo," I pause and I pause again. I can't seem to find the words. They have escaped me. I take a deep breath and begin.
"Boo, do you notice anything different about Gabe?"
"No." she replies sincerely looking up at me.
Should I push it? My heart starts to race. Should I just let her continue believing and treating Gabe as though there isn't any difference between them. That all three year olds squeak instead of talking sometimes?
It's what I want...Isn't it?

"Really?" It stumbles right out of my mouth.
"You don't notice any differences between you and Gabe?"
"Well......" she pauses and looks down.
She knows.
She's been hiding it.
How could I have not seen it?

"Well....," she continues, "I know that Gabe is a boy and I am a girl."

What?

"That's true Boo. Gabe is a boy and you're a girl." I hug her and leave it at that.

Holy Language Explosion Batman!

"Daddy's going to put batteries in your toy Gabe."
"What are you doing?" GABE asked.

"I hear an airplane!" GABE said.

While putting Aquaphor on Gabe's face before bed, due to an outbreak of excema, I heard the following...
"In bed Mommy."
"Read Thomas!"
"Get in bed"
"OK, all done," I say. "Let's get in bed."
"In bed, read Thomas!"

Leaving the room after getting the low battery window from my lap top I hear...

"Where are you going Mommy?"

Gabe was bouncing on SD's lap pretty agressively, so SD pretended to cry and we hear....

"Daddy, you OK? You need a hug?"

"(Boo), have a pig?" Gabe asked when wanting to play with one of her plastic pig figures.

"Daddy, excuse me, I have Poo Poo." And he did!!!!

Incredible. What's happening? Why is all this glorious and spectacular language happening now? Is it the weather? Age? All the practice and therapy?

All I can say is........ WHO CARES!!!!!...... I LOVE IT!!!!!

For those of you new to this blog, Gabe was completely nonverbal, noncommunicative just over a year ago. There wasn't some miracle cure, just hard work, a great speech therapist, and many ABA therapists that are wonderful. Amazing....

HOORAY for GABE!

I keep thinking he must feel like shouting..."They finally GET what I am saying!"

We do. We really do :o)

The magnificent bubble

Driving to school this morning, about 5 miles away, Gabe declares, "See bubbles!"
I look out the window and see trees whiz by, blurred along with an occasional car driving faster. What could he be seeing?
"Bubbles?" I ask. "Where? I don't see them."
"Bubbles in car!"Gabe answers excitedly.
"Really?" "Huh." Still not seeing it. We have had a lot of that with Gabe lately. I figure we are missing about 50% of his language, because the words have become clues, encrypted by another program we are not familiar with. SD catches more of what Gabe is saying than I do. It's a gift I believe.
Seeing that I am struggling with his request, Gabe decides to expand, "Blow bubbles mommy!"
"Oh!" I look back and he is smacking his lips together, imitating me chewing my gum.
"Do you want me to blow bubbles with my gum?" I turn and smile at him in the back seat.
"Yes!" he agrees doing the happy butt dance.
So the bubble blowing began. Bubble after bubble we laughed. We chuckled at the ones that found solace in sticking to my lips and cheeks. Wowed in amazement at the bubbles that wanted to grow until they were stretched so thin, you wondered if the gum would just simply disappear. I blew and blew, loving every second I was having with him, connecting, bonding, embracing the wonder.