All posts by Rebecca Gaunt

Writer and special needs mom. Go Dawgs! All opinions expressed in my blogs are my own. They do not provide legal or medical advice.

Which is the bigger scam? Appraisals or the TSA?

The last couple weeks have been rather exhausting in good ways and bad ways. Good = trip to Boston. Bad = corrupt housing market.

Might I start by saying I hate property appraisers? I think I said that in my last post. It is still true. Despite the fact the houses by the same builder with the same floor plan have recently sold around the $200k within walking distance, our appraisal at $185,000, $20k below the agreed upon sale price will stand. We were already taking a hit from what was paid. And despite our complete makeover of the lawn from dirt to gorgeous grass, the addition of granite in the bathrooms, a thorough de-brassing of fixtures, a new water heater and a new roof, it’s still worth $25k less than it was appraised for in 2007. So dear, dear appraisers, yes, we all know you were oh so shady in your role (I say role, as banks and irresponsible buyers should not go blameless) in helping destroy our economy, and I’m so glad that you can continue to screw up people’s lives by swinging to other end of the spectrum and undervaluing everyone’s properties, as you once over valued them to line your pockets. I despise you and your industry. You have undervalued our house and taken money from us that should be going towards my child’s needs. I wish upon you a lousy life.

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Yes, we are going ahead with the move. It will hurt in the short term, but is best for the long-term. We had to heap much fertilizer on our money tree in the backyard to make it possible. Closing is in two weeks.

In brighter news, Connor is crawling like a fiend. He’s truly my child as he keeps making a move for the kitchen island wine rack and tries to steal one of my bottles. I couldn’t be prouder. He also knows that I have toys to sell stashed in the laundry room, and despite the nine kajillion toys strewn about the house, he wants  the ones in the laundry room. Emma has nearly lost her tail twice in his deadly jaws. I’m desperately trying to make him understand that bathrooms are grody mcnasty and that he should not follow us in there.

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We went to Boston last week for his third visit as part of the TSC study. He also had his annual MRI at Boston Children’s. Everything went smoothly, and I can see why Michael Jackson was hooked on propofol after an extensive period of time trying to wake Connor — not in a scary way, he just really wanted to keep sleeping. It’s waaaaaay better than my melatonin. We haven’t gotten the results yet. Hoping for no growth, of course.

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Connor’s veins continue to be elusive, proving that it isn’t just Atlanta that can’t get a vein in this kid. He always leaves looking like a retired pin cushion.

We’ve pretty much walked all over Boston at this point, so we just revisited some favorite areas.

We watched Harvard's sailing practice on the Charles River.
We watched Harvard’s sailing practice on the Charles River.

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We played with ducks in the Gardens.
We played with ducks in the Gardens.
We visited the only Curious George Store in the world at Harvard Square.
We visited the only Curious George Store in the world at Harvard Square.
Connor demonstrated that high chairs work best when you sit backward.
Connor demonstrated that high chairs work best when you sit backward.
He stole my bed.
He stole my bed.
Plane watching at Boston Logan.
Plane watching at Boston Logan.

I love going to Boston. I actually think I could live there in spite of the cold. The only negative aspect of the trip was the idiotic TSA. I’ve actually been feeling more kindly toward this waste-of-taxpayer-money organization as having a kid has miraculously made flying easier in a way. We get to skip the security line in Atlanta, they do a quick, problem-free scan of his milk, food and meds as they are oversized liquids and we get to board first. I even get to bypass the full body scanner and walk through problem free. But this time, coming home, my sixth flight with Connor, suddenly things change. They pull his diaper bag as usual due to the liquids, but this time, because of them, she tells me one of his parents must submit to a full-body pat down, as well as have their personal bag searched. Chris is already on the bench putting his shoes on, so in complete surprise, I begrudgingly volunteer to do so. Two questions: 1. What the hell does having oversized baby liquids have to do with arbitrarily patting me down and searching my purse? 2. What is the point of letting the parents choose? If we are indeed carrying a bomb, obviously the one who isn’t wired up is going to volunteer. She informs me that if I get all his stuff in 4 oz containers, I can avoid this. Hey pharmacist, I’m gonna need all Connor’s meds in a series of 4 oz bottles, please, and make it snappy! I inform her that I have flown with him six times and this is a first. No response. So apparently bottles of Enfagrow in your bag = right of government agency to stick their hands up your crotch. And they wonder why we don’t thank them for their service to this country. That and the fact that they’ve never stopped an attempted terrorist attack. That’s the job of the other passengers on the plane.

Anyway, our plan to try name brand seizure meds in hopes of better control did not work. We are now weaning off Trileptal and moving on to Onfi. His seizures have been increasing, and though they are short and he recovers quickly, he drops suddenly. He’s face planted on the floor three times now. We have to stop these before he walks. Please let Onfi be the one.

 

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Why is Michael Bolton messing with my life?

Why does life have to be so damn frustrating? You know how everything just fell into place with selling the house? Of course it couldn’t be that simple. Also, I’m really struggling not to drop an F bomb in every sentence today.

Everything was going along swimmingly until Michael Bolton showed up at my house. Well, at least some guy trying to look like the 1989 version of him, hair and all. The appraiser of our current property. After a few days of him dragging to turn it in, we all had the distinct feeling he wasn’t going to meet the sale price. We began to prepare for the possibility that we needed to make some more cash appear on our money tree in the backyard. We threw around some figures that it might be. None of those figures was as high as $20,000, but indeed, that is how much he undervalued our house by.

So now everything is a mess. A mess for the people buying our house, for us, for the people whose house we are buying, and the people whose house they are buying. Good old Michael Bolton wannabe has jacked all of us up big time.

Our realtor is fighting the appraisal. Especially since he used a pending sale as a comp (a comp has to be closed) and he did not use one property from the Autumn Lake neighborhood (remember the one I complained about stealing all our buyers because they have the same builder and floor plans and are right behind us?) He is ignoring her at this point and she’s talking to the supervisor. But if we can’t get this one adjusted, we have to get another appraisal, which ain’t free, plus, now we are looking at major time restraints, which mean that to continue we must reschedule the inspection of our new house that we cancelled for fear we’d be paying for it for nothing. We will have to do it without knowing if a second appraisal will do us one damn bit of good.

Basically, I’m making the call to potentially flush more money down the toilet that could go into fixing up our current house if this blows up in my face. My anxiety has me feeling like I could throw up. We’re both frustrated, and Chris is at the point of just wanting to fix this house up. But I can’t let go of the fact that if we can make this work, I think long-term, the new house might be the better solution. But the thought of continuing to flush money makes me want to throw up. What if I’m making the wrong call? If we can’t get this appraisal raised, should I just throw in the towel? To even make a second appraisal work, the buyers would probably have to change lenders, too.

Thank you, Michael Bolton, the appraiser. But a couple days ago I was feeling positive and excited. Now I want to punch someone. You.

Have a lovely undervalued day, sir.

“You’ll feel more rested if you get up at the same time every day.” LIES!

I’m having a terrible time keeping up with the blog now that I’m doing some other writing for meager pay to support my eBay habit. I’m trying, I swear! If I could just become a morning person, I could get so much more done. But almost 17 months of consistently getting up at 8 a.m. and I still can’t function properly until 10. Grover taunts me every morning with his chipper, go-getter attitude.

The big news is that Connor just started crawling the other day while we were in Blowing Rock, NC with my parents. He’s not doing it consistently, still doing a lot of commando crawling, but at least we know he can do it now. We are very excited. The cats are not. He’s also now demanding far too much attention after having Chris’ parents stay with us for the half a week leading up to the trip, and then another half week with my parents.

I think Connor would really enjoy having pet ducks in our backyard. Chris disagrees.
I think Connor would really enjoy having pet ducks from Blowing Rock in our backyard. Chris disagrees.
Swinging with Grandpa in Blowing Rock.
Swinging with Grandpa in Blowing Rock.
Meeting the giant doggie at Mast General Store in Boone, NC.
Meeting the giant doggie at Mast General Store in Boone, NC.
The dog makes a great rug.
The dog makes a great rug.

He also just added aquatic therapy to his regimen.

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We are so loving how attentive he is to what is going on around him these days. He had a delightful meeting with the Chick-fil-A cow recently, and also cheered up some not-so-enthusiastic waitstaff at Texas Roadhouse during their obligatory hourly line dance. His clapping and enthusiasm had the embarrassed, Man-I-really-need-the-money staff smiling.

I like ladies. I like music. This is some sweet line dancing.
I like ladies. I like music. This is some sweet line dancing.

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We had an appointment with his neurologist this morning and I requested we try name brand seizure meds (Trileptal and Keppra), in place of the generics since we continue to have breakthrough seizures. Many people swear by them as generics can vary in potency so much, so I’m hoping it makes the difference. I’m sure insurance will be delighted. But after they just sent me the private info of three people by accident…well, let’s just approve it, seeee (in gangster voice).

In other awesome news, as Connor was approved for the Katie Beckett Medicaid Deeming Waiver, we were then also able to apply for HIPP. which is a Medicaid program that helps pay your private insurance premiums in cases of serious health issues, as it is in their better interest to make sure you keep you private insurance, than lose it and resort to full Medicaid. We were approved, and this allows us a lot more income to put towards any other needs we want to meet for him. And my wine. I’m so thankful that Connor’s Early Intervention program people have been so good at making us aware of these programs. So if you have a kid in EI, make sure you have applied for Katie Beckett, and if you have done that, make sure you apply for HIPP (I don’t know what the variation is from state-to-state. I know we are lucky that such services are easily attainable here in Ga compared to what I hear about some other states, particularly in the midwest).

As for the house, I kid you not, we told our realtor toward the end of the month that we were taking it off the market July 31. We finally got an offer on July 27. So this house is under contract and we are under contract on our new house, as well. We will finally have a room we can dedicate to Connor’s mess–I mean, toys.

Don't feel bad! You've been a good house.
Don’t feel bad! You’ve been a good house.

I swear this has been the most humid Georgia summer of all time, but others have told me I’m insane and it’s always this bad. At any rate, I’m ready for fall and to wear my new scarf that my sister-in-law Donna made for me from Chris’ old shirts.

The King of Izod has some extra space in his closet now.
The King of Izod has some extra space in his closet now.

Also, two events I want to make sure TSC families are aware of in the area:

298465_187704037963818_1579148_nOn Saturday September 8, we are having a family bowling event. Cost is $10 per person, which includes shoes and unlimited bowling. Food will be provided. Details here.

On Thursday October 10, we are having an educational meeting on financial planning for your children with special needs. Details here.

 

Winners of the “Leaders Open Doors” Giveaway!

Apologies for being a day late with the drawing. It’s been a wild weekend in regards to the house being on the market. More on that this week when I have the details.

These commenters will receive a copy of Bill Treasurer’s book “Leaders Open Doors.” Please e-mail me at pin.the.map@gmail.com by August 2 with the address to mail the book.

Sylvia

David Tumbarello

Ken Lininger

Dan Forbes

Kim Coil

 

If I am unable to get in touch with a winner by Aug. 2 I will select another commenter.

 

Thanks!

Leadership Lessons From a Special Kid (and giveaway)


coverNote from Mixed Up Mommy: I’m pleased to have author Bill Treasurer as a guest blogger today. Proceeds from his latest book will benefit children with special needs. I also get to do a giveaway with five copies of his book! If you would like to receive a free copy, simply leave a comment on the post. I will draw five names on Saturday July 27 and contact the winners, as well as post them here. Check his book out on Amazon.

By guest blogger Bill Treasurer

For the last two decades I have taught leadership development to thousands of executives across the globe. I’ve written books on leadership and courage, and a widely used courageous leadership training program. I even did my graduate school thesis on leadership. Despite all of the wonderful leadership lessons that my clients have provided me, few people have taught me as much about leadership as my nine-year-old daughter Bina.

Bina (rhymes with Tina) has cerebral palsy. She is also profoundly deaf. Both challenges are the byproducts of a virulent staph infection she contracted at the hospital just days after she was born. Americans with disabilities make up the largest minority population in the United States. Some 54 million Americans have a disability of one form or another. And anyone who has been graced by the company of such people knows what a blessing it can be. It can also be heartbreaking. During Bina’s first year, it became clear that she was lagging behind her twin brother, Alex, in significant ways. Alex rolled over. Bina didn’t. Alex crawled. Bina didn’t. Alex responded to our baby talk. Bina didn’t. Alex received adoring smiles from strangers. Bina didn’t.

The first leadership lesson Bina taught me happened early on. At first, all I could focus on was Bina’s disabilities, which caused me a lot of anger. I’d think, “Why did this happen to her? Who caused this?” and “Why can’t she do the things her brother can do?” Then, just before she turned two, a friend of mine wisely suggested that I start focusing on Bina’s abilities, not her disabilities. When I heeded my friend’s advice, Bina started progressing much more rapidly. In some strange way, by focusing on her disabilities I had become a block to Bina’s progress. I had pigeonholed Bina as a “handicapped” person and had started treating her as such, often by babying her. Once I started focusing on her abilities, my parenting shifted from taking “care” of her, to fostering her strengths by encouraging her self-reliance. Leadership lesson #1: People go farther when you focus on what they can do, not what they can’t.

The next leadership lesson came when Bina was four. At that point, Bina was still in a stroller because she couldn’t walk. Her brother Alex, on the other hand, was turning into a rambunctious little Ninja gymnast. To encourage his aerial hijinks we set up a trampoline in our backyard. I’d teach Alex trampoline moves while Bina watched from the sidelines. At the end of our little practice sessions I’d always make time for Bina too, holding her little hands and bouncing up and down.

One day, just to see what would happen, I sat behind Bina, stood her upright, steadied her hips, and let go of her hands. Then Bina did something she never had done before: She took three full steps. On the hard floor, Bina was never confident enough to do this. Kids with cerebral palsy fall down a lot, and Bina was no different. She had fallen off enough chairs to know that the hard floor wasn’t her friend. So watching Bina take three teetering steps was hugely thrilling. On her fourth step she fell to the mat and giggled as my wife, Shannon, and I cheered wildly

Recognizing that we were onto something, Shannon and I began to set aside time each day to walk with Bina on the trampoline. Before long, three steps turned to five steps, and five turned into ten. Then we set up a long runner of matted cushion on our back deck, figuring it would help her make the transition from the spongy trampoline surface to the hardwood floor. Drawing on her trampoline successes, Bina cautiously stepped out on the runner. Soon she was taking more steps on the deck than she was able to on the trampoline. It was all terrifically encouraging and inspiring. By setting up our backyard trampoline, we created a safe way for Bina to do something that she had previously felt was too unsafe to do. Walking, formerly a frightening and potentially injuring experience, now had become fun. Notice that the action we wanted Bina to take (walking) hadn’t changed. What had changed was the consequence (and only temporarily). The spongy trampoline surface was far more forgiving than our hardwood floors. When we surrounded the same action with safer consequences, Bina became much more willing to take a risk. Leadership lesson #2: If you want people to take more risks, make failure safe and success possible.

The third leadership lesson involves communication. Bina has had a cochlear implant since she was two-and-a-half. The technology has been a wonderful blessing in that it has allowed Bina to hear and acquire language. Along with intensive speech therapy, the cochlear implant has made communication with Bina possible. Still, Bina talks differently than most people. Her deafness impacts her intonations and her cerebral palsy affects the use of her tongue and mouth. So communicating with Bina takes a lot more patience and listening. It is not uncommon for her to have to say something a few times before you fully understand what she’s saying.

Few things provoke other people’s judgment than how one communicates. Northerners make judgments about southerners due to dialectic differences in pace (northerners tend to speak faster than southerners). In the same way, it’s common for people to make judgments about the intellect of people with special needs because they often talk differently. This is especially true for people who have cerebral palsy whose faces often contort and shift when they talk. But when you take the time to listen deeply to a person with special needs you get to know their preferences and perspectives. Over time I’ve learned that communication works best when I communicate with Bina on her terms, not mine. This requires adjusting to her cadence, intonation, pace, and unique dialect. Communicating with Bina on her terms has allowed me to discover how wonderful, caring, and beautiful Bina is, and it has deepened our connection to one another. Leadership lesson #3: Effective communication results from patience, listening, and setting aside your own communication preferences.

Being Bina’s dad has been one of the greatest joys, and greatest educations, of my life. I’ve learned powerful lessons about dignity, unconditional love, prejudice, and leadership. You couldn’t pay me all the money in the world to take Bina away from me, though I would give you everything I own for her to not have had to suffer through her challenges. In the end, though, my job is to love Bina as much as I can love her to help her go as far as she can go. To me, that’s the ultimate job of a parent…and a leader.

 

Bill Treasurer is the author of Leaders Open Doors, which focuses on the responsibility that leaders have for creating opportunities that cause people to grow. The book is carrying out its own message: 100% of the royalties are being donated to programs that support children with special needs. Learn more at www.leadersopendoors.com.


Bill is also the author of Courage Goes to Work, an international bestselling book that introduces the concept of courage-building. He is also the author of Courageous Leadership: A Program for Using Courage to Transform the Workplace, an off-the-shelf training toolkit that organizations use to build workplace courage. Bill has led courage-building workshops for, among others, NASA, Accenture, CNN, PNC Bank, SPANX, Hugo Boss, Saks Fifth Avenue, and the US Department of Veterans Affairs. Contact Bill at btreasurer@giantleapconsulting.com, or on Twitter at @btreasurer (#leadsimple).

A Long Wait Finally Over

I met Giovana in eighth grade in 1993. She thought I was a weirdo. I thought she had big poofy hair. Just kidding. That was normal then. I was gonna bite the bullet and post a picture from that year for the sake of humor, but there are apparently none with just the two of us, and it seems wrong to bring down innocent people.

So here are some from high school.

My sweatshirt is misleading. I actually hated high school.
My sweatshirt is misleading. I actually hated high school.
Homecoming.
Homecoming.
Senior Prom. Hate my hair.
Senior Prom. Hate my hair.

Then came came college.

Going out.
Going out.
What? We went out a lot.
What? We went out a lot.

A few years later this guy shows up and is all, “See this sweet ‘stache I’m rocking? I’m gonna marry your friend.” I had been out of the country for their dating relationship. I tried to hire a hit man but he was too expensive. Fortunately, I decided I like Damien and didn’t have to kill him. Though we did ixnay the mustache.

Cruz Wedding 2004 (15)

Then they put up with my whining for a few years about how I’d never get married, until…

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They had been wanting a baby for a long time. But sometimes life is a pain in the ass. After years of waiting, they got the call.

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And now Connor has a new friend.

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Welcome home, David!

Slow Motion Changes

It’s a strange sensation to watch your child develop in slow motion. Every new skill gained is not just exciting, but so…noticeable. Some parents say things like, “Oh, he just suddenly started crawling” or “she seemed to walk overnight.” Not in our world. It’s kind of fascinating, really, when it gets broken down into bits and pieces — often with the help of a physical therapist trying to explain it to you. How many parents actually notice the first time their kid reflexively throws their hands behind them so they don’t fall backwards from sitting, and even if they do, do they realize how significant that is? Connor isn’t quite crawling, but I’m watching each step along the way. Every new positioning of his legs and body. If you have a typically developing child, did you give it much thought the first time they got into a side sitting position? Because that’s a really big deal, too. What about when they were sitting and playing and pivoted in another direction? The first time they passed an object from one hand to another? Used the pincer grasp? Banged two objects together? Maybe you were excited by the first mamama, but were you just as excited when you finally heard bababa?

The last several weeks have been incredible. Connor used to hit milestones with a lot of lag time in between. And when it seemed like he was about to hit one, it would take forever to  actually happen. There was that quick head lift that made me think he was on the verge of having head control, but that took several more weeks. There was the first time not completely flopping over from sitting, but it was months before he mastered it. But we have had a lot of firsts recently, followed by quick mastery. He threw his hands forward to catch himself from falling forward in PT, he rolled to his belly finally (that was just a stubborn thing-he actually rolled the other way on time) and realized rolling could actually serve the purpose of locomotion, he became mobile, he started using consonants, he can pull himself into a sitting position without help, his interest in what is going on around him has quadrupled and he fell in love with Elmo. He started comfortably sitting in the grocery store cart and observably recognizing certain words.

He’s doing really well despite an uptick in recent seizure activity. But he’s also had recent med changes in the weaning of vigabatrin and adding trileptal, so I’m remaining optimistic about that improving. They don’t seems to have a lingering affect, though they have morphed in appearance the last few days. He was having what were suspected to be complex partials in which his body would clench up and he’d stare off to the side unaware. Now they start with him losing awareness briefly and he clenches up, but then he regains awareness and is responsive while his mouth twitches like crazy. It’s like a weird mix of complex partial and simple partial. But what they they truly are remains to be seen.

And the remolding helmet only needs to be worn at night now now!

Through it all, he’s happy and giggly. Well, except for the week from hell with those two teeth coming in. They still aren’t out, but he seems to have settled down. I will go in and get them myself if they start up with him again. I don’t do no sleep.

Most new learned skills are awesome. Just not the ones that involve pouring milk all over the backseat.
Most new learned skills are awesome. Just not the ones that involve pouring milk all over the backseat.
Whoever that kids is, he is awesome!
Whoever that kids is, he is awesome!
Now that the carpet is sufficiently full of milk, I'd like to replace it.
Now that the carpet is sufficiently full of milk, I’d like to replace it.
How long do I have until mommy starts making rules about TV?
How long do I have until mommy starts making rules about TV?

Bye bye, helmet! Sort of.

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Connor will now have to learn that he can’t head butt everything in sight and get off scot free because we are done with the cranial remolding helmet! Well, mostly. He’s still going to wear it at night to prevent the pressure on the back of his head, but that’s really just sort of precautionary. It’s not guaranteed to make a difference. At any rate, Connor had a scan this morning and the changes were very minor from the last scan. Most of the correction took place in the first few weeks and it’s just not enough at this point to justify continuing treatment. While his head isn’t perfect, I think it’s vastly improved. Plus, he has so much hair, you can’t really see anything anyway. The scan diagram actually makes the change look more minimal than I think it actually is. We go back in eight weeks for an exit scan and we will be done! Imagine that, treatment finished before it ever even gets paid for by insurance…

Not sorry to see it go, but I will miss the wide eyed shock of children in public running to their moms and loudly whispering, “What is on that baby’s head?!”

There’s a Storm Coming…

Connor is going to be a nightmare when he gets fully mobile. Don’t get me wrong — I’m counting the days — but as I type he is trying to kick my laptop off my lap. No, wait, now he’s alternating kicking his legs and shaking his head back and forth as hard as he can and smacking into me with his remolding helmet. His left side is covered in fur he tore out of Emma Cat. Did I mention he’s lying in bed with me because he’s totally wired and not even close to sleeping? And he keeps trying to steal blankets and pillows from us.

The other night he was lying on the couch with me and he bit my boob. As in, made me bleed. He never breast fed because he didn’t latch in the NICU, and all I know is that he tries to remove any finger that goes near his mouth. Those extended breast feeders must be out of their minds.

He’s just a big ball of toddler energy trying to bust out of a delayed body…but it’s coming. The reckoning. He will soon destroy this house and everything in it.

I can’t wait.

Huggin' it out.
Huggin’ it out.
Training for WWE Safari edition.
Training for WWE Safari edition. Also, I should put all those toys on eBay since he’s perfectly content to play with a spoon.
Still working on that hide and seek concept.
Still working on that hide and seek concept.