All Ears

Schmoozer got a hearing aid last week. It's a loaner, and older, analog style hearing aid, that is set at a moderate volume, just to get him started.

It is a Godsend. He looks at me when I talk to him. Seriously, do you know how exciting that is? This is just the appetizer, I cannot wait to get the main course!

______________________________


This weekend was Rockstar's graduation open house. We had a lovely day, and she made quite the killing on money in cards.

So today, I tell her to get some stamps while she's out.

Rockstar: Hmmm, where do I buy stamps?

Me: Ummmm, the post office?

Rockstar: Where is there a post office?

Me: Ummmm, there's one in every town babe, and even one in that tiny burg around the corner, I bet you can find one if you try.

Rockstar: Really?

....and this is the girl who regularly informs us that she could move out any time she wants. Would she be able to find the grocery store when she's hungry? Maybe they can attach one to the mall for her. ;)

Whispering Sweet Nothings

I am waiting on pins and needles for the call to go get hearing aids (finally). My little Schmoozer loves to read books. He loves to imitate anyone and everyone, when he finds something he can hear, he holds it to his ear and listens over and over and over and over.

How I long for him to hear me read to him (do you know how hard it is to sign when you are reading a book with a child on your lap?) How I long to tell him the names of all these wonderful things that he sees. How I long to see him sing and dance to music on the radio. How I long for him to hear the sweet nothings I whisper in his ear.

I feel robbed. Robbed of the experience of a hearing child. Robbed of the give and take communication that comes so easily with the hearing child. Schmoozer technically can hear, but at 70 dB, he cannot hear any speech sounds, which in my mind means he's deaf. My heart aches with the longing to have him hear. Please join me in praying that he readily accepts the hearing aids, and that his mind will be open to all the wonderful sounds that he will suddenly be able to hear.

My Child's Story

OK, I found this blog carnival at In The Life of a Child, and decided to join in. However, I have 3 kids with Spec Needs, So I will write a brief overview of each, rather than a comprehensive post on one.

Bert (aka Alex) was my second child, but he introduced me to the world of Special Needs. After an emergency C-section because somehow he no longer found my womb compatible with life, Bert came into this world gentle as a lamb. His first cry was when he was 3 weeks old, I'll never forget it. Beaner stepped on his hand while he was basking in a sunny spot in the living room. I was thrilled, he cried! Bert was born with a little bonus in the 21st chromosome. Most people associate this condition, called Down syndrome, with mental retardation and the obvious facial differences that those especially blessed kiddos carry. I, instead associate this with an incredible ability to live in, and enjoy the present moment, a delight in this world, and an especially large heart.

When Bert was <2, the Chief left to check on his sister, who was in heroin withdrawal, and came home with our Rockstar (Chels). She was 13-1/2, but the size of a rather small 10 year old. She had long, scraggly hair, was pale and drawn, with haunted eyes. At the time I had no idea that she would become my daughter, but through time and experiences, she is. Her mother passes away nearly 3 years ago, leaving me to parent an orphaned teenager. Rockstar has since been diagnosed with PTSD, bipolar, and RAD. There were times in parenting her that I had resigned myself to believe that she may never be a productive citizen, that if helping her find Jesus was all I did for her, that would be enough. I am thrilled to say that by the power of the Holy Spirit, she has found Jesus, and much more. She is living abudantly, and though she doesn't always make great choices, she is learning and growing, and has blessed our family beyond measure.

The last child to enter our family is Schmoozer (Ben). In early 2006 we submitted our information to Robin Steele of the Adoption Awareness program, hoping to adopt a second child with Down syndrome. Within 3 weeks we got a call, matching us to Schmoozer's natural parents. After waiting 3-1/2 months for research and decisions to be made, and for paperwork to clear, we brought Schmoozer home from the District of Columbia. Within days, we realized 2 things: 1. that he didn't poop right at all and 2. that he didn't hear right at all. As time has gone by, we found that not only does Schmoozer have DS, but is also moderately to moderately severely hearing impaired, he has Hirschsprung's disease, he has hypothyroidism, and to top it off, he has Cyclical Vomitting Syndrome. Talk about getting more than you bargained for! Schmoozer has filled, not only our hands, but also our hearts, to capacity. Through 8 hospital admissions and more tests and proceedures that I care to remember, his delightful presence has blessed us by his will to live, his spirit, and his ability to learn, despite all the odds against him.

It has been a delight and pleasure to parent these amazing kids. I have learned so much about myself, my priorities, about my Lord and Savior, and about living in the moment from these kids. Though they have brought with them struggles beyond measure, they have blessed us far more abundantly than that!

May I add, last but not least, my Beaner (Hannah). She was my first child, but now she's not my oldest. She is totally typical, bright, precocious, gentle and sweet. She never asked for such a house full of crazy sibs, but she wouldn't change them. She is, by virtue of being the only typical child in a house of 4 kids, also a child with special needs. Of all of my amazing kids, she amazes me the most. What a blessing she is!

See No Evil, Hear No Evil

Drive your mom crazy.

If you haven't guessed, Schmoozer's vision is "extremely farsighted" putting him
"very high on the Opthalmologist's radar". No wonder the kid is busy, he gets
little input from 2 of his main senses. If you want more info on farsightedness
in kiddos, read this.

Since Beaner had nothing better to do, she decided to bring selective listening
to a high art. Hey, it works for Schmoozer, right? Well, after months of
frustration, we got her hearing tested, and she failed in the high frequencies.
Off we go to the ENT. I hear his retirement portfolio is looking great these
days!

Did I mention the ENT? Bert gets new tubes on Tuesday, and they are checking
his sinuses for obstruction (at my insistence), while he's under without
optimism of finding anything fixable .

Speaking of fixable. We have a Rockstar whose vision is nearly perfect, but has
mild nearsightedness (per the optometrist, glasses are strictly optional). With
the persistence of a teenage girl with a new accessory in sight, she insisted
that it really is troublesome, and she NEEDS glasses. She will be charged the
full cost if they are not worn nearly continuously for about 6 months.


The Chief and I can still hear and see as well as ever, thank God. Whatever happened
to the axiom that duct tape can fix anything?

AAAAAAARRRRGGGHHHHH

Picture me, all psyched up, did my hair, makeup to a tee, ready to go. Today was Ben's hearing aid appointment. The Chief and I have been dying to get this kid hearing. Imagine living with a busy 2 year old who doesn't hear a lick. It's beyond challenging, and his hearing aids have been our light at the end of the tunnel. We know Schmoozer is bright, he learns quickly, but he can't hear, he's bored, lacking stimulation of music and voice, he is constantly seeking other stimulation, and not even hearing us scold him, well, it's not pretty, every battle must be fought hands on. It's not uncommon for parents of HOH kids to feel this way, HOH kids can be monsters.

So, imagine the look on my face when the staff advises me that medicaid will not cover the deductible primary insurance. This is no small potatoes deductible, it's $500/hearing aid. Of course, that's not too shabby, considering that they are covering $7000/hearing aid. (Oh my, I think I heard a couple people hit the floor reading that).

Fortunately, the story does not end there. Because Ben is disabled, we can apply for Children's Special Healthcare Services. They will cover everything, even batteries and repairs as needed. It's a better deal overall.

But here's the kicker.... I called. I did my homework, I asked the questions ahead, specifically to clear the obstacles and streamline the proceedings. I called our health insurance carrier, I called medicaid, and I called the Audiology office. If I'd just been along for the ride and got caught with my pants down, it would be one thing. But doggone, I try so hard. I dot my i's and cross my t's, and yet I still got run right off the tracks today.

It's not parenting special needs kids that's the hard part. I can handle all they have to dish out for the "payment" of a couple hugs and a big old sloppy kiss. It's the red tape and nonsense like this that gets me down.

Alas, on a rainy, icky day, my mood matches the weather, and the fat, wet tears that slipped out as I left the Audiology office without even getting ear molds made will not be so noticeable with the fat, wet raindrops that hit my coat as I walked.

It's Been a Week

The vicious icky bugs hit our house, like 3 different kinds, all in a week. First is the week long stomach ache bug, then the pukey/poopy bug, then the achy chest cold sore throat bug. Bert was the only poor soul who got all 3. Since he is still in diapers, he was quarantined to his room during the pukey/poopies, and with hand sanitizer at the bedroom door, we managed to keep that one down to one person. Everyone shared the tummy ache bug, but the Rockstar gets the award for overplaying that one during a routine physical and getting a trip to the local hospital for an ultrasound to rule out appendicitis (she's fine, a drama queen, but fine). Last but not least is the chest cold with the sore throat and achies, which Bert and I have taken the brunt of, but don't touch that dial, the chest cold is still alive and kickin' and could easily jump to anyone else in the house in a heartbeat!

Schmoozer had his BAER, and the results were 10 decibels worse than his BAER from 7 months of age. This is perplexing as supposedly conductive hearing loss should improve with age. Alas, this is where we are. On to get hearing aids.

Bert's appointment was cancelled and rescheduled for next week, but somehow I have stopped puzzling over that one, probably because I spent 3 days sleeping off a virus.

Beaner's 9th birthday came on the heels of the pukey/poopies, and while mom was in full blown chest cold with major aches and sore throat. We managed to pull off quite a day for her, though it nearly killed me. We had to cancel her slumber party to reschedule for a later date....to be determined. Grammy stepped in to save the day, and swooped in to rescue Beaner as the healthiest person in a house full of vicious icky bugs, and brought her up to Grammy's for a weekend of fun. Thank God for good Grammy's

My dear husband must get mention here for taking his 2 days off, during great steel head fishing time, and babying me and running the house. He selflessly took care of business, great and small, and kept things running smoothly while I slept on the couch. He's priceless!!!

~Edited to add: I did find out that if a child has a sinus infection, and that same child barfs stomach acid out his nose, that the stomach acid will actually kill off the nasties causing the sinus infection, thereby curing the sinus infection, not that I plan to use that method again any time soon, but it isn't worse than 20 days of penicillin~

Puzzling

My boys each have big appointments this week. Schmoozer gets his ABR, and Bert gets the results of the sleep study of that seems like it was eons ago.

On the eve of such appointments, I find myself puzzling over and over in my mind. Trying to arrange all the pieces I have in such a way that with my limited knowledge I can manage to predict the results. I have just enough pieces though, that there's a part of my brain that won't quit trying to make a valid picture from them.

It's a running monologue and it goes like this:

Ok, so during the sleep study Bert would stop breathing for what, a count of 10...I'm pretty sure that qualifies as full blown apnea...The doctor had referred to the fact that he's not really a candidate for CPAP due to his sensory issues and mentioned ENT referral for surgery depending on the results...So will his sinuses need roto-routed or does he need a hyoid bone suspension for floppy airway, or both? would he have to spend the night if he has surgery? what am I thinkin', I don't even know what his results are, they may be fully normal and I'm just going over this all for nothing, and even if I'm right or totally off the mark, it doesn't make a difference, the study shows what it shows.

or:

Last time Schmoozer had the ABR it only showed mild conductive hearing loss, is it worse this time, his behavioral audiogram is worse now than it was then, is there sensorineuro damage in the meantime, or is it still primarily conductive hearing loss? The nurse who called said he will need IV sedation, have his veins improved in the 3 month reprieve from constant poking, or is he still a hard stick? Will it be a nightmare of IV starts again leaving me feeling like a cold wet washcloth, or maybe, just maybe will the get it on the first or second...for that matter even the third or fourth try? The test adds tones that weren't in the last ABR, will they really get a good accurate picture of his hearing from this? Will the tech give me the results while we're there like last time, or will I have to wait?

It's not worry, per se. I'm sleeping fine, I don't feel anxious or upset about it. It's just running in the background, like the silly muzak in the elevator. It is just there, going on in the background, and I'm not even sure if it shuts off, and if it does shut off I don't have the switch anyway, so I just let it fade to the background most of the time, and when I'm not otherwise occupied, I play it out to the end in my head. Each time I kind of expect to come up with real answer, so solve the puzzle. Each time I end up a few pieces short, and each time I realize I cannot solve it on my own anyway. It happens every time some new test or result or referral comes along, it's just part of the elevator ride.

Even though it's in my head, I still find it odd.

When Did This Happen

I was reading on a discussion forum today and started crying. By God's grace alone I was able to respond in what I think was an upbeat manner, we'll see how people react.

The problem was language. The thread was about a potential adoption opportunity in which both of the birth parents have some form of seizure disorder or mental disability, it's hard to tell exactly.

The overall note of the thread was open, honest and good. What bothered me was that a few posters used terms like "suffer from a disability" or "Down syndrome babies".

Have you seen the photos of my boys? Are they suffering? Are they defined by a third 21st chromosome, giving them a title of Down syndrome baby.

These little stinkers amaze me so much. I think of Schmoozer. Born with 5 weeks early with Down syndrome and Hirschsprung's disease (which was not treated until he was 15 months old). Developed Hypothyroidism and has moderate to severe hearing impairment, and deals with Cyclical vomiting syndrome to boot. Yet this little man is so full of life, so ready to give each day his best, so bright and beautiful! He has so many knocks against him, yet he's out to rule the roost and live the good life.

And Bert. Again, born with Down syndrome, his sensory systems send crazy mixed signals, he has to work hard to find a word he wants to use, and even harder to get his mouth around it. But his is such an incredible little person, he brings a smile and light everywhere he goes, and digs in and gives his best, he meets each challenge he faces with eagerness and excitement.

My sons are not suffering with mental retardation. They have not been afflicted, and it doesn't define them. They are children of God. They are beautiful and incredible. My biggest wish is that the whole world could see them as I do!

Deaf/HOH

Last night I had what can only be described as a nightmare about Schmoozer's hearing. During this past week I met with the Deaf/HOH teacher, and got a much clearer picture of what we have in store for the Schmooze with his hearing. I was under a false impression that his hearing could be "fixed" at some point. Well, if it was "just fluid" that would be true. Unfortunately, what I choose not to hear before (though I remember being told) is that "just fluid" would typically test about 30-50 dB better than Schmoozer did, awareness of speech at 70dB. That's a shout, from pretty close like right in front of him. That's not what Schmoozer hears clearly, that's where his hearing starts....at 70dB. It's nearly impossible to chalk that up to just fluid, so it's nearly impossible to believe that his hearing will be "fixed" anytime soon.

So I have been looking into more signing, and trying to get an idea of what the Deaf/HOH community has to offer. I'm not finding a whole lot. The DS community is so large, so supportive, so wonderful, that I guess I had grand expectations. We'll see, maybe I just haven't stumbled upon the right google search yet.

Alas, all this has brought on a nightmare. I don't remember much except that the little girl next door who has a reputation as a tattle tale, came and told me that Schmoozer was deaf, and to just live with it. I remember people signing, and I remember sobbing, sobbing sobbing.

I guess this is part of coming to terms with another label, another diagnosis, another disability. From past experience I know we will be just fine, I know that this low will return to normal, and that we will get a good handle on Deaf/HOH living and do better than well.

But for now, I feel like crying.

This....

is what a little person with conductive hearing loss does all the time. This little peanut craves auditory input.

I can't wait to get hearing aids~the BAER is on March 10, then the appointment to get started with the the audiologist for hearing aids is March 31. Those days can't come fast enough!

2 Years of Schmoozer

I adore this kid. He amazes me. He is so full of life and confident, fun and funny. I am so grateful to be his mom. Happy Birthday Schmoozer!

It's funny though. I called Medicaid to find out about hearing aid coverage. (We're all set, no out of pocket expense after private ins. and medicaid YAY!) Anywho, he still has his birth name on his medicaid card. This fact causes me some grief in using it, but I like it that way. For that same reason I have never gotten an amended birth certificate. The Schmooz had a SS# when he came home to us, so we never needed it. I think Bethany was supposed to have done it, but alas, it didn't happen. To be honest I couldn't care less. So when the very helpful young woman at Michigan Medicaid offered to send me a card for Schmoozer with our last name on it, I found it hard to accept. It's only reasonable, but it feels weird.

I think about the Writer and the Prosecutor a lot on Schmoozer's big days. I wonder how their day is going. Though we are in contact, it is by email, and mostly from me, so I don't know much about how they are doing.

I never anticipated that it would be this complicated. That I would have a very real and genuine love for the people who brought my son into the world, and that there would be many times that I would wish they could benefit from the delight he brings us, that they could know him and love him like I do. It's just so complicated.

My boy is 2, and I couldn't be prouder of him!

A New Spring in My Step

I knew that having my typical daughter, first son with DS, then adding a teenager and a second son with DS would not be an easy lifestyle. I knew that when my husband took a job that had him living outside of our home for 10 months, that I would be spread even thinner. Then when Schmoozer started having medical issue after issue, and Bert's behavior would not get any better, and Rockstar just kept having trouble, I started going down hill. I got tired, very tired, then exhausted, then depressed.

I am familiar with situational vs. clinical depression, and I knew that I had a severe situational depression, but never got treated. After all, how do I find time to take care of me?

Finally, with Schmoozer mostly under control and just hearing aids left in a long line of ailments, with Bert settling in and just awaiting the results of the sleep study and whatever intervention that necessitates, and with Rockstar settling in and getting ready for college, I have a wee bit of time to indulge myself. I am finally getting treated for a neck issue that I've had for years, and feel so much better. I am seeing easier days coming, and man does it feel good. My burden is lightening little by little, and it finally feels manageable.

The corner turned when I found out that we will most likely have zero out of pocket expense for Schmoozer's hearing aids. (Picture me with a giddy mom face here).

....and did I mention that the Chief and I are getting away for a night. To a resort with an indoor waterpark. :-)

I'm putting it Together

2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2

For the first time in a long time, I am hoping that things are all adding up, that we are getting somewhere, and that there is a break in my reasonably near future. Schmoozer's getting hearing aids. That is the last of the significant medical stuff we've had going on with him. We've been able to manage his Cyclical Vomiting better since we know what it is and have meds to deal with it. I can hardly believe it's been 2-1/2 months since he's been admitted to the hospital! He was admitted 8 times last year, for at least one night, and up to 10 nights.

We have Bert's sleeps study done, we have Speech lined up (waiting for the therapist to get approval from our insurance to start), he's doing well in his new school. So once we get the sleep study results and whatever treatment is required (possible surgery?), we should be sailing pretty smooth with him too.

Beaner is hanging in, but needing extra lovin'. Rockstar has an enormous Grad Party to prepare for, but that's cake.

I think I see light at the end of the tunnel, and I think I like it. What would a semi-normal family life be like?

Hearing Impaired?

From the newsroom of the Associated Press,
Thursday, January 24, 2008

PepsiCo's 60 seconds of utter silence will stump the hearing-abled

The Associated Press
NEW YORK - Amid the wall-to-wall sound during next Sunday's Super Bowl,one commercial from PepsiCo could send some viewers grabbing for their remotes to check whether they'd accidentally hit the mute button.

The pre-game advertisement features a joke that originates from the
deaf community and will play out on screen over 60 seconds of total
silence, a veritable eternity when it comes to the noisiness of Super
Bowl ads.

"It's a popular story and we just turned it into an advertisement,"
said Clay Broussard, a supply and logistics manager at PepsiCo who
proposed the idea for the ad. "This is the PepsiCo flavor of that
joke."

The joke goes like this: Two guys are driving to their friend Bob's
house to watch the Super Bowl. Once they get to Bob's street, neither
knows which house is his. They sit in the car, arguing, until one of
them has an idea. He starts laying on the horn, and one by one, the
houses light up and dogs start barking.

One house stays dark and quiet: It's Bob's.

Deaf people will be falling out of their chairs in disbelief, National
Association of the Deaf president Bobbie Beth Scoggins wrote in an
e-mail response to questions. Hearing people, Scoggins wrote, will stop what they're doing to see why there are no sounds. She believes it's an historic first for an ad featuring American Sign Language to get such prominent play.

"I was glad to see this part of deaf culture awareness shared in a most clever way," Scoggins, who is deaf, wrote by e-mail as she was
traveling.

Broussard, who plays Bob in the commercial, has worked for PepsiCo in Dallas for 27 years. He got involved in the deaf community through a
church he and his wife attended, where the services were conducted
entirely in sign language. Broussard is not deaf.

The two actors who play Bob's friends - Brian Dowling and Darren
Therriault - are also PepsiCo employees, and are deaf. Dowling works for Frito-Lay in Arizona, and Therriault works for PepsiCo in Chicago.
Broussard worked on the ad concept on his own time. He said, "This was all extra credit." It was 18 months before he showed it to senior
managers, who decided they wanted it for the Super Bowl.

The ad was directed by Baker Smith, with creative help from BBDO-NY. A PepsiCo spokeswoman declined to say how much the ad cost.© 2008 The Associated Press. All rights reserved.


http://www.youtube.com/watch?v=ffrq6cUoE5A




BTW, Schmoozer's getting hearing aids.

70 Freakin' Decibels

Ya know, when you get your radio going. A song you like, just loud enough, but not too loud. You're jammin'. Or you're in the office, and it's just a little too noisy. Just enough noise to be annoying and distracting. It bugs you, it's just that much louder than normal.

That would be the minimum sound Schmoozer can hear. 70 Freakin' Decibels. He is on the brink of severely hearing impaired. This is an ongoing battle. The hearing loss is conductive, which means it's because he has tiny canals and lots of fluid, even with tubes.

The ENT Doc told me to use drops to clear the tubes. Do you know how impotent that feels. The tubes are just over a month old, he doesn't want to replace them since he can't get anything bigger than those stupid Tiny Titans in, the new ones would be plugged in a month anyway. What next? Hearing aids? Something else?

BLAH!