Saturday, December 30, 2006
So, here is an odd tidbit about me that I bet you will say to yourself....."Ok...and what do I do with that?"
I am not a fan of odd numbers. 2006...good. 2007.....doesn't look or sound good to me.
Do I take it really serious? Do I meticulously plan outings from the home to occur only on even days? No, not really, but if I had to choose a day for an important date, I would definitely go even. As life sometimes just happens, many important dates in my life happened, oddly enough (no pun intended) on odd days, months or years. Both my children were born in odd months, on odd days in odd years, I think God was poking fun at my neuroses. I probably met SD on an odd day, month or year...Huh. Ya know what? It was an odd year that we met come to think of it! So maybe it should be the other way around? Who knows.
If you have a quick moment on New Years Eve, know that I am wishing you all well in the New Year and that secretly I am also wishing it was an even year. Just because.
Thursday, December 28, 2006
"No, no I have two children. I taught for about seven years until my daughter was born." I proudly state.
"So, what do you do now?" he asks.
What do I do now? Huh. Did he miss the two children part?
And then it hit me. The little wheel turning in my head that says, "Yeah...what exactly are you doing now?"
My thoughts raced to find the answer. I let myself search through the past five years looking for something, anything that would be remarkable to say that I have done. What have I done? What have I done that would translate to the working world as something formidable, valuable to the whole of mankind or at least those that work nine to five. All I could think of was trains (I now know a lot about trains), School House Rock (I can sing almost every song) and Nemo underwear . Is that all I got? Thomas, kid songs and underwear?
So, nothing.....nothing comes out. And we stand staring at one another.
He's an aide to a US attorney, lives in a beautiful place on top of a mountain with his new wife, also an attorney, no kids. He and I are on totally separate paths, that is really apparent. I know that. But why, after five years, I still stumble when asks what I do as a mom?
He's a great guy, very funny, but it really struck a cord this time. Why haven't I gotten it together yet?
When SD and I went to bed that night, the answer finally came to me. What do I do as a mom? I love my children. I love them until I feel like I couldn't love them any more at the end of the day. That's what I do. Plain and simple.
Why is it hard to find that answer sometimes?
Thursday, December 21, 2006
It felt really great not to do the long drive yesterday. The crazy, old people that seemed to hover around the area hospital where Gabe's school was, will not be missed. They drove without a purpose and seemed to believe that as long as they didn't hit your car really hard it was OK. It made the 20 minutes from the expressway to our destination very scary. I can not even count on one hand how many accidents I saw that happened about a mile from school. I will, however, miss the smiles from his therapists, secretary, and people from the program before. It's hard being a stay at home mom, it's the isolation that can get to you. When you know the cashiers by name at the supermarket, you have officially been inducted to the Stay At Home Mom's Club. I have my card, wanna see it?
So, with all that comes extra time. I already have a comprehensive plan, with goals, for Gabe that will begin after the holidays.But, I have two days of unplanned time. YIKES! I have managed to make it fun for me and for Gabe with these goals in mind....
1. I need to exercise 45 minutes both days in order to prepare for the two pieces of pie that SD's mom's will serve me on Christmas Eve and on Christmas Day. Don't get me wrong, they are delicious, but two? I feel obligated. I say "small pieces, please" and I swear they are cut to wedges that look like the Titanic breaking through the ice dams!
2. Gabe is to have limited TV, computer and video game time. One video after lunch, video game for 1/2 hour when Boo comes home and 1/2 before lunch of computer time.
3. I will spend at least 2 hours of the day fully engaged with Gabe doing games, playing with toys or anything that he chooses to do. They may be broken up in 1/2 hour increments.
4. Gabe will spend some time playing with a toy independently that I have begun with him and then let him explore on his own. The Fisher Price toys and the train work well for this.
5. Both days Gabe will be given at least 45 minutes of social play with peers working on the following goals...
*Introducing himself to playdate
*Asking what their name is
*Asking if they want to play one of the following things....Chase, acting like a cat, playing dinosaurs, follow the leader (He may also just ask to play what they already maybe playing)
*Saying goodbye when they have to leave.
So, that leaves me with what happened today when we practiced our new skills.
After walking for 45 minutes (It is so much harder when you have to push a 4o lb. child in a crickety stroller), I was glistening for sure! Gabe got to chose what he wanted to do for fun, see the fish at the huge hunting store, look at the crocodile and fish at The Rain Forest Cafe or play in the play area in the middle of the food court. He happily chose the play area. Thank goodness, because it makes playing with someone easier. That is where we met Hailey. Hailey was a cute, outgoing and energetic little girl, Gabe's age, that was looking for a friend to play with. "Really?" I thought, with a smile.
"I just want to have a friend to play with." Hailey frowned.
"Hey,I have someone who would be a lot of fun to play with!" I turned to Gabe.
"This is Gabe and he loves to play." I looked at Gabe and I believe I saw a twinkle in his eye!
I prompted him to ask what her name was and it just went from there. I provided some guidance, sometimes for both of them on what and how to play together. They pretended to be cats as I fed them "treats", they chased each other, laughing and giggling. Gabe was so happy. I felt a glimmer of hope. Hope that we will be OK no matter what. And that's when I saw it....Gabe held her hand. He so very gently slide his little hand around hers and smiled. I got a lump in my throat, my little boy is growing up and he will be OK. Fantastic.
Hailey quickly pulled her hand away, not because she didn't appreciate the jester, but because she turned towards Gabe, said something, and they started running again...together.
Tuesday, December 19, 2006
I was a little flabbergasted for a minute there when blogger actually posted my picture. Kinda caught me off guard! (lol)
Can you believe we were all put on antibiotics with sinus infections the next day after this picture was taken? We felt a little under the weather, but wanted to get the picture done. We got one done and immediatley left. I think Gabe looks the best out of all of us! Although Boo is a very close second. She actaully broke out in a rash on her face the day before. We thought it was allergies and gave her benadryl (She gets Contact Dermatitis a lot), but it was a reaction to her sinus infection. She's such a trooper.
I am SO excited about Christmas this year. I just want to sing Rudolf from the roof tops. Having kids is the best!
Friday, December 08, 2006
Excited about our "up and coming" actress' part we asked, "What is the play about?"
She proudly stated, "Baby Jesus and the Ranger."
This is what immediatly came to my mind.
And the Ranger....
Thursday, November 30, 2006
This by no means is an invitation to opening the doors to having a forum discussion on the dynamics of toileting, really I get it.I do not want to spend any more time talking about how that area of the body works. But, why oh why, does it have to be like this?
Gabe is doing better than we thought, but not as great as we wished. Is he right on par with his peers? Some of the remaining ones he is, mostly the ones who are just too stubborn to be potty trained. Gabe enjoys the whole pottying experience and the amazing things his "mister" can do, but has a hard time distiguishing between what is peeing and what exactly pooping is, whatever I say, such details can be sorted out later. So when I mention the partial success I am having with Gabe, it makes my friends with an NT child close in age quickly start to potty train thier kids the following weekend.
Gabe is where Boo was at a year and a half of age. She was fully potty trained at 2 1/2 years old, with minimal guidance.
"This is a potty Boo. You poop and pee in it. Yeah!" The end.
However, she also did not have the wonder that we refer to as "mister" doing marvelous things when she urinated, but I digress. Gabe is able to use the potty every 40-50 minutes with a good success rate. He is having problems when he is feeling a little tired, especially in the afternoon and bowel movements are being reserved for the more quite, private, VIP rooms in our house. So, he is having quite a few accidents later in the day. But, he tells me when it happens and we follow through with our potty training plan called Postive Practice, based, as you may have guessed it, all on behavior. Rewarding the behavior we want and not emotionally reacting to the behavior we don't , but instead turning around and practicing the behavior we want again. I am a true believer in Behavioral Therapy. It works for Gabe. It really works for anyone wanting to change an undesirable behavior to one that is desirable, like quiting smoking, wanting to exercise more, have a more positive attitude, can all be shaped through changing your behavior. Cool concept that actually works.
So, here I am, not quite an outcast on potty island. The missile fire from "mister", combined with the defacing of NEMO on his underware has made some days more challenging than others. But, we will get there togther.
Tuesday, November 28, 2006
Life just happened.
That's cool with me. But, then it's not. You see, I have a terrible memory, especially about the important moments. I am great about feeling the moment ( I will never foget how I felt when I first saw Boo and Gabe), but to remember the specifics get a little hazy over time. Here's an example, when Gabe was being diagnosed ASD, I was asked countless questions about Gabe and his developement that required specific dates.
I knew when he walked, how long he nursed for, but his first bite of food? Rolled over? First word spoken? Ahhh......hmmm......yikes, I could remember very little. I was lucky and for some reason ( Thank You God), I was incredibily meticulous about writing down everything about Gabe since his birth. Maybe it was the hormones.
Anyway....Wow..I really got off track. When I do not post, I feel like I am missing that great opportunity to hold on to at least a smidgen of wonderfulness that both children give me everyday that I would normally lose to maybe a grocery list or trying to remember what size shoe Gabe wears. (I'm rolling my eyes at myself). I still hold firm to the belief that all the sleep that I lost when both kids were really small made me a little senile and perhaps a little crazy.......
Now, where do I begin, what should I talk about? The fact that potty training has been happening for Gabe for the last two weeks? That he is playing with his peers exceptionally well? That shoes that have been peed on can only be washed so many times?
What's that I hear?
The garage door is opening!
"Is that ice cream you're holding SD?"
Okay. I gotta go.
Sunday, November 05, 2006
Gabe had a blast this weekend throwing pennies in a few fountains at the mall, courtsey of the grandparents.
"Water!" Gabe points.
"It's cold," he holds himself and pretends to shiver. "Brrrrr!"
"It's purple,"he looks down at the colored tile under the water. "Wow,"he whispers.
Boo liked to try to get her pennies directly in the center of the fountain. "That's cool!" she exclaimed with excitement.
Fountains and change was the highlight. How simple is that? Maybe I just need to throw more wishes into a fountain.
On Sunday, we all go to church with our bag of toys and a few suckers. Church, to me, is a lot to ask of young children, let alone adults, especially my denomination. This is what I remember as a child about church, my butt hurting from the pews, dead animals draped over women's shoulders, music lacking passion, and someone who talked forever...and forever...and forever. The church aspect about faith is not important to me, although I wish that there was more of a sense of community, but that's another story. What's important to me is that my children live there lives knowing that God is there to guide, love and cherish them always. So, I smile when Boo sings along and Gabe dances in my arms and that is all I expect from them at church.
Boo and Gabe's favorite part of church is the offering. All the children in the church walk down the aisle to a wooden well. Surrounding it, each one watches as the money clanks around until it's gone.
Grandpa gave Boo a one dollar coin. Her eyes widen as she looked at it, turned to me and said,"I don't have a quater like this mommy!"
Gabe had one quater and one nickel and off they went. Normally, I let Boo guide Gabe down and back, but this time she was mesmerized by the beauty of her coin. So, I followed a few steps behind.
Down the aisle we went, both a few steps ahead. I was in a sea of people that only came up to my waist. They all look so cute in pretty dresses, ties, khakis, button down shirts and an occasional pair of glittery ruby red shoes from Target. Boo reaches the fountain, poised to make the drop, when I turn to see Gabe, not at the offering well, but B-lining to the baptism fountain. Arm raised, fist clenched full of change, he pulls back ready to throw his money into the "fountain". My eyes widen, jaw drops. My God! Is he going to throw his change in the baptism fountain? I run, in what feels like slow motion, trying, desperately to reach him. I am caught in the sea of little people! "Excuse me. Yes." smile,"Pardon me." Please God, I pray, not the baptism fountain!
Then the gasps from the first few rows of pews.
Thoughts like...How do you get change out of a sacred fountain? Would I just casually reach in and fish them out? It looks pretty deep, would I wade in? What do they do with contaminated baptism water? Would we be the reason for the implementation of a sign stating "Change does NOT belong in the baptism fountain. It is not a wishing well!"
I reach him mid wind up, quickly releasing the change from his grip. I swear I heard a sigh of relief from the crowd. I guide Gabe to the well, drop the money in and try to slink away with the well dressed little people.
Tuesday, October 31, 2006
Sunday, October 29, 2006
Check out THE CHUB FILES to see just how far Gabe has come.
Thursday, October 26, 2006
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.
Wednesday, October 25, 2006
Sunday, October 22, 2006
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.
Sunday, October 15, 2006
"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.
Wednesday, October 11, 2006
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....
Friday, October 06, 2006
Say it with me BCBS.....
Maybe with some more practice.
Why do we have to pass a law that would state the obvious?
Thursday, September 28, 2006
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.....
Thanks for the cool site Karmyn at Dreaming What Ifs...(http://klraisldreamings.blogspot.com/)
Wednesday, September 27, 2006
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.
Sunday, September 24, 2006
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.
Saturday, September 09, 2006
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!"
Monday, September 04, 2006
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)
"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"
Thursday, August 31, 2006
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% of the $10,000 we have already spent???!!!!!
It would start from the day that the referral is written and can not be retro active.
I almost threw up.
I'm calling to see what services you offer for children with ASD?
That depends on what they need.
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.
Alright.....(MUST guess better)
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?
(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.
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?
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.
Friday, August 25, 2006
I know summer is almost over and you would
even be pressed to find one, dirty, lone, sad flip flop at Target,
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.
Friday, August 18, 2006
Sunday, August 13, 2006
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.
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.
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'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."
"That's true Boo. Gabe is a boy and you're a girl." I hug her and leave it at that.
Saturday, August 12, 2006
"What are you doing?" GABE asked.
While putting Aquaphor on Gabe's face before bed, due to an outbreak of excema, I heard the following...
"In bed Mommy."
"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)
Wednesday, August 09, 2006
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.
Monday, August 07, 2006
We're back and we are exhausted! What a weekend. It was filled to the brim with fun, fun and more fun! There was now a cool slide for the pool and the two completely exhausted themselves on it. I think this picture was taken the night after the many hours of swimming that day. Can you see the Cars from the BK kids meals? Gabe loves them. I may have to Ebay for the rest of the crew. The fish pillow next to him is one of those pillows that are really soft and squishy. It was his favorite present this year for his birthday. I found that he really liked them after he kidnapped SD's mom's pillow that she used for long car rides. He couldn't help but snuggle with it. Gabe has slept with this fish every night.
This is the slide with beautiful Boo ready to take the plunge. Amazing huh? Grandparents really get the whole fun thing. Sometimes so much, that our kids do not want to go home with us when it is time to leave. Who would blame them? Boo is trying to convince us that we need a pool like grandma and grandpa. Our backyard slopes way down into the woods. We've tried to explain that you need a flat area for a pool and most importantly, no flesh eating mosquitoes. This obstacle did not waiver our determined daughter, because she said, "How about the front yard?"
"That would be interesting," I replied.
I guess if the neighbor can park his Trans Am in his front yard, why not? Now how to explain to Boo that pools do not come in pink?
This past weekend, I attended my first WrightsLaw Conference in Kentucky. It took about two hours from SD's parent's house to get there, starting my day at 5:15AM. Yaaawn. I found Peter Wright very engaging. I also liked that he was a lawyer and presented his seminar that way. Some parents, including myself, tend to try to see the facts through the emotion. Thus, making our perception of things skewed. Peter Wright lays it all out there, by fact only. What works and what doesn't. It's really not about who's right (Do you want to win the fight, but lose the battle?), but how to get your child what he/she needs based on indisputable facts and proof. He has no time for I'm right, you're wrong. That won't get your child what they need and could damage the relationship between you and the school.
Here is an example...
I met Mr. Wright after the conference ended. I had only one question that I needed answered. I had, after more than a year, gotten it down to one pet peeve about the district.
I asked, "Can the school district choose to disagree with 7 reputable doctors' diagnosis of Autistic Spectrum Disorder for my son?"
He replied," Is he getting services?"
"Yes, but.....His diagnosis guides his services. Being Autistic is the reason his speech and social abilities are affected." At my core I believed this to be true.
"Listen," he responded in a very matter a fact way. The lawyer had come to surface. "It's not about the label. You can fight and fight them on this, but is it really about the label?"
"Doesn't the label drive the services?" I said wavering.
"No. YOU do. You provide the information and reasons for the services he needs. A label doesn't get you what you need. Facts, proof and understanding about your son is what will guide the process."
"Oh, " I replied sheepishly, "Thanks for your help."
I walked away.
I walked away relieved. Relieved that I could leave this battle with Autism and focus on my son. He is much more than a label. I happily dropped my war plan against our district in the trash on the way out.
It's amazing how one person can change your mindset.
I feel am getting closer to understanding what an IEP is really about.
Wednesday, August 02, 2006
Upon viewing The Lord Of The Ring Trilogy for the 6th time , SD and I feel the need to remark on the following...
1. When traveling to Mount Doom, remember chapstick and apply often
2. Elven women do not look good when possessed by the ring.
3. Doomback Mountain, the untold story of Frodo and Sam
4. Pip and Merry remind me of the two people at the party that never left the Keg
5. Rivendell puts Boo's Barbie dream house to shame
6. The Mouth of Saruman had some serious periodontal disease
7. Sauron does resemble a certain part of the female anatomy
8. Oh, what an ending! Oh, it's ending now...now? There are four endings to this trilogy. By the time it finally did end, I was disappointed, because it seemed like it was never going to end.
9. How could Denethor not love his son, Faramir? He was smokin! (Obviously, not one SD wanted to point out and we do know about him being under Sauron's power)
10. Frodo's Orc armor made him look like Gonzo from the Muppets
11. Where is my huge eagle and butterfly friend when I need to get away?
12. Horn blowing = good, loud drumming =bad
13. Bring marshmallows when lighting signal fires
14. Gollum would not fair well as a Chippendale
I love my wedding ring, but when I hold it, I , unfortunately, am not blessed with the orgasmic look that Frodo gets when he holds his ring.
Tuesday, August 01, 2006
I used to believe that Old Navy perfect fit T-shirts were my perfect fit. Each one looked good with any short, pant or even casual skirt I picked out that day. How wonderful it was to go to a store knowing they had what I needed. No rack scavenging, dressing room drama or sad shuffling feet leaving the store empty handed. They fit me and I fit them.
Our preschool search still continues. I keep asking myself, "What is Gabe's perfect fit?
Does the program offer enough social interactions with other peers? Is part of that time guided by a teacher? How do they handle transitions? The list for perfect goes on and on. Where do I draw the line? What do I sacrifice from that list. Some things are obviously really important, such as having the necessary black T-shirt in your closet, while others I can substitute or even go without for a season. But, which ones do I chose? What if what I choose happens to not be in fashion that season? What if I am pushed off the runway? What if the decisions I make for Gabe affect his progress? Like gawkers watching in horror at my ineptness to dress myself.
I know about One day at a time or Let go and let God. Easy to meditate on such words when time is not a factor. Spots are being filled, evaluations are being conducted and our options are narrowing. If I didn't know better, I would say that even Old Navy is slowly taking the blessed short sleeve shirts to the back and replacing them with the thin, easy to see tummy rolls, I love Spain T-shirts. No one my stature wants to be seen in those.
I do know that it takes time to get used to new clothes, new ideas, new places. I just hope that Gabe's closet will be full of great opportunities, learning experiences and love.
Sunday, July 30, 2006
1011 people took the time to look at my profile!!!
Now if that isn't a good reason to celebrate with ice cream I do not know what is :o)
Now if only I could reach #1 in the stats in our ring, SD will get a big steak dinner and I will enjoy some King Crab. I think he will be waiting a Loooooooong time! lol There are some big shoes to fill that far up the stats.
Death.... peanut butter (hands weighing)......Death?..... peanut butter?...DEATH?...peanut butter?.
I think I could consider that a challenge in life.
A peanut allergy is considered a disability under the Americans with Disabilties Act.
All right. I'm finally letting it go.....
Saturday, July 29, 2006
At least not now. Not today or this year.
I can't fight the fight.
Not while my child is left in the arms of the ignorant and
uneducated, overworked and uncaring staff at the public school he would attend.
I can't be "the one" to make a change in our district.
It is a title too weighted by circumstance, timing and dumb luck.
Not at my child's expense.
Kindergarten will be the year that we approach our district again.
I will be much wiser.
Gabe will officially be in his "home school" and the team of people we will be working with will be different.
New school, new teacher, new speech, new OT, new PT. If we're lucky, new director of special education (early retirement, job change???)
A smudged, yet cleared slate for our district and us to try again.
We just have devoted the last year unequivocally to Gabe.
I can not and will not enable their "program" to create an atmosphere for regression.
Sleepless nights that lead into pavement pounding days have provided new light and possibilities outside of our district for preschool.
My anxiety seems to be lifting.
We still have to notify our district of our decision and get our ducks in a row at his new school.
The cost is only a little more than a regular preschool.
We have decided to continue ABA therapy at home mostly by me and an occasional therapist.
We also decided to pull him from the current ABA school after this semester ends.
It is just too difficult to make the best decisions for Gabe while you are under someone's thumb (SD's parent's have felt more comfortable with sharing their, not so positive and often argumentative,opinions about our choices for Gabe).
Just some paperwork paired with fresh ideas and our outlook and future for Gabe seems brighter.
The day that he goes to his new preschool now brings images of standing by the planter outside for his first day of school picture, lunchbox in hand and a smile on my face.