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.