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.

Nothing Says I Love you Like....

A home made tumbling composter.

I'm not a flowers girl, flowers die.

I'm not a jewelry girl, I wear a simple gold band, and when I'm dressed up I put my diamond on, and maybe my DS awareness bracelet.

I am a chocolate girl, but that can fall into the "too much of a good thing" category.

I am an environmental geek. I get all flushed in the face when I see my Chief tilling my garden for me. I get all sweaty and faint when he brings home manure for me, and when he develops plans to make me a tumbling composter , oh, dear heavens, I could strip down naked and do a pole dance for him.

Just wait till he pulls weeds with me on a hot July day.....

Stepping Back and Rethinking

The other night the Chief and I were talking about my internet "addictions". The conversation sparked me to examine my motivations for putting so much time and energy into online relationships.

What I've realize is that while my online friendships are real and wonderful, I've allowed them to become a substitute for pushing my rather self conscious self to build closer relationships IRL.

I've never been good at friendships with women. I just don't get all the subtleties. Once upon a time I worked in a male dominated profession, and kept up good and real friendships with men. Now that I'm not working, and the predominant contact of SAHM is another woman, I'm a bit at a loss.

I had developed some friendships with my neighbors, but as my faith walk has grown, the friends that I used to see a movie and hit the bar with on mom's night out are just not close anymore.

But I have some budding friendships that I have not kept up, and it's time to work on that.

I may be a little bit less frequent 'round here, but that's a good thing.

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~

Fisical Fitness

My incredibly fit husband has decided to run the 5/3 River Bank Run. I have no intentions of running 25 k ever unless there is a rather enormous bear with excellent endurance behind me, but yet I'm not one to be easily outdone.

Alas, I am back on the fitness bandwagon after a couple years of laziness. Going back to my uber-healthy cooking style of days gone by, and doing pilates and indoor exercise on the bike Millie loaned my until the spring sunshine is warm enough to bring little Schmoozer out on the real deal or swing through the neighborhood for a walk/jog.

Another new tag on the blog for all my fisically fit friends.

Gerbils and Colleges and Bras, OH MY!

Yesterday was a big day here in the Smugglerschmoo house. After much discussion, we believe that Rockstar is totally on board with starting college by taking a year at Community College! Rockstar and I went to look at the campus, and she was excited and a bit relieved to be going there. She found a yoga/pilates class she wants to take for PE, and was surprised at the variety of offerings she could delve into. We are signed up for spring orientation!

On Saturday, Beaner announced that her BFF had a bra, a real one, like the kind I wear. WHOOOO DOGGIE. After confirming this information, and confirming that Beaner was dying to have her own bra, I stopped at Target and picked up two little teensy tiny bras for $6.99. She wanted a "real" bra, so I ensured that the have clasps. She slept in the one with the hearts on it.

Last but not least, my hard shelled, soft hearted husband who was dead set against the purchase of a hamster, came home with a gerbil. He made the mistake of informing his partner, Starfish, that Beaner wanted a hamster. You see, Starfish's wife works at the animal shelter, and is an animal freak. Coincidentally, she had a very sweet natured little black gerbil that was hand-friendly right there that we could have, for FREE! In fact, Starfish's animal loving wife, Peta, had even had a guinea pig before, and still had a cage and some feed that we could have. Alas, Ivan the black gerbil has joined our family, and Beaner was last seen soaring past Jupiter in delight.

Wordless Wednesday - Getaway

(no, Sandy the squirrel is no relation to the Chief)

You Can't Have One Without The OTHER

OK, so the Chief and I decided to include Beaner on our 2 night getaway. We decided to do this because we are going to a waterpark resort, primarily. The secondary reasons are that Beaner needs a break too, she needs total attention of just mommy and daddy, and because she is our only typical child.

It all made perfect sense.....until we told the Rockstar. She is still really struggling in school, and we are going during the week for good rates, she is at least 1/3 of our stress (sometimes more), and she usually doesn't want to go places with us anyway. Really I'm not sure she would even want to go, she just doesn't want to be left uninvited. I don't blame her.

What we came up with is a spa day for just her and me during graduation week. Facial, manicure, pedicure, and some serious girl time. I think we're all set. Phew!

Shooting Rockstar

~This post includes some feelings that are difficult for me to admit to myself even, let alone to post for others to read. Yet I feel it will be very therapeutic for me to examine my thoughts thoroughly enough to post them here, so here goes.~

Some of you have been reading here since day one, and know how I got my teenager, others don't, so here's the Reader's Digest Condensed Version:

In the fall of 2003, we got a phone call that my SIL, the Cheese, had police at her house, and was being taken to jail. Phil, my FIL, called the Chief and asked him to come manage the situation, which he did. We took the Rockstar and her little sister home with us that day, and they stayed for about 2 weeks. At that point in things, CPS was notified of their home situation, and came on the scene in a very weak and pathetic display of impotence.

Upon her release from jail, the Cheese promptly dispatched her husband to our house to get the kids, against the wishes of CPS. They returned home, and stayed until January of the next year. At that time, the Cheese was nearly at death's door from the tolls of her addictions, and once again we took her kids home, and the Rockstar has been here ever since, but with her little sis having a different dad, little sis went back to her daddy after just several more days here.

At that point, CPS filed with the court, we were ordered to get our Foster License, which we did, and the proceedings began. After about 15 months, the Rockstar was ready to go home, even though we were nearly certain the Cheese was using again. Alas, that never happened, on June 14, 2005, the Cheese succombed to a heroin overdose, and the Rockstar settled in here to stay.

At that point both the Rockstar and I knew our relationship needed to change. She had resisted connecting with me, since she felt like that was betraying her mom, but that had changed, and my role needed to too.

I started off with a bang, I was nurturing, gentle, open and warm, but as Rockstar's feelings waxed and waned, I wondered if I was overstepping, and backed off a bit, only to "play mom" in fits and starts when the need was apparent.

Meanwhile, she was determined not to need me. She didn't want to lose someone she needed again, so once again, she kept her distance. Reading the cues, I backed off again until the next time she allowed herself to become vulnerable enough to want or need me. This is how it has gone since then.

This past few months, I had made a real effort, despite the stiff arm I sometimes got in return, despite the intermittent rejections, I just kept plugging. I was finally making real forward progress, and was so proud of myself. It's not easy to bond with a teen on that level. The cute antics, sweet hugs and kisses of childhood are long gone and have been replaced by moodiness and attitude, and the silliness that does come along often is more obnoxious than cute. But it was working, we were getting there, slowly, but getting there.

Then exams came. When the failing grades came home she was defensive, like a porcupine backed into a cave. She was not letting us near her without all her quills at full staff. I tried in my gentle way to help figure out what she needed to do differently in order to pass next time, and was shot down, so on cue the Chief popped in.

I will not pretend he was gentle, but he was on topic, and never unkind. She went off. She attacked him, and threw slurs about me, not knowing that I was near enough to hear every word.

Now, weeks later, I am not sure how to recollect and go there again. There is such a distance, such strain, but I don't know how to put myself out there again. To risk the rejection I knew would be there, was one thing, but this is a whole different level of resistance, emotions I never knew were there. I know what she said was in anger, but I also know that there's more than a morsel of true feeling there, and that it's likely what has been behind the resistance all along.

I know she will not take the first step, and I don't know how. My energy is drained. Bert is up most nights at least 2x, and often many more. Schmoozer has the ongoing hearing problems that I have come to realize need tackled, and that will be no small task. I have Beaner, who gets too little of my left over energy in the first place, and I just can't find anything left to regroup my emotions and get back on track with the Rockstar, which alone would be a monumental emotional effort.

There is so much of me that says she is nearly 18, off to college, and to just let it go, to just maintain for now, and try again to build a relationship once she is out of my house, not so omnipresent. I just don't know, maybe that's the right thing anyway, but maybe she needs me to, wants me to push some more. I just don't know.


__________________________________________

On another note, she has finally agreed to psychiatric treatment again, though resistantly. It seems that her mental illness is more far-reaching than I had realized. I hope and pray that with proper treatment, this will become easier, maybe she will be more willing, more able to connect back with me, maybe.

She is hesitant about treatment. I wonder if she just doesn't know who she is without the mental illness, and feels vulnerable to think of having that removed from her personality. Just a thought.

Strange but True

It is strange to me, it really is. It's strange how important sex is to men. After having my procedure done, I was ordered not to place ANYTHING into my vagina for 2 weeks.

The Chief nearly passed out when reading that portion of the instruction sheet.

At the end of 2 weeks, I can say this, my husband is a much more pleasant, much happier, helpfuller, and more kind, gentle, and tender man when he's getting it than when he isn't.

For me, 2 weeks without...eh, no big deal, for him, devastation. I think it's just how men are wired. By looking at the Chief, one can easily see that he is a highly testosterone charged man, but even I did not fully understand the extent to which this affected his sex drive, and how much this release affected him as a person.

After finally making it through the 2 weeks, he is singing, happy and pleasant this morning. I guess that will teach me.

Bert has a loose tooth. I am SOOOOOOOO not ready for him to loose teeth. I'm a bit disappointed that he won't understand the tooth fairy thing. In our house we prefer to avoid clouding Christmas and Easter with bunnies and men in red suits, we "play pretend" about these things, but never actually teach the kids to believe. So when it comes to the tooth fairy, mom has a hayday. Silly, I know, but I'm sad that he's loosing teeth before he's ready for the tooth fairy.

Now for me. I'm perturbed at myself. Seems one of my spinal nerves is pinched. Like, in my neck. I don't know exactly how or when it happened, I've had pain in my neck and shoulder for time immemorial, I always thought it was just my scoliosis. But with the tingling in my back and right hand, it was time to bring it up at my annual neurology appointment. I see her for migraines, and this was supposed to be a check up for that. She ordered a test called Electromyogram with Nerve Conduction Studies. That means she stuck needles into my muscles to see how much electrical charge they produce at rest and while flexed, and also shot electricity into the nerves to determine if they are conducting appropriately. No, it's not as bad as it sounds. From this she determined that I have nerve impingement at the level of my 8th cervical vertabra, which is most likely caused either by disk herniation or arthritis. An MRI will show if I need physical therapy or surgery, but I will certainly need one or the other as this is getting more and more uncomfortable daily.

Rockstar gave blood last night. The world almost ended. Last I checked it's still turning, but it's still in jeopardy. When the Rockstar doesn't feel well, the whole turn of the planet is in jeopardy, or so it seems. She has her pathetic face on and the voice to go with it. I highly doubt she will challenge herself to the noble calling of blood donation again soon.

Puking at the Top of Your Lungs

My husband has a talent. It is puking for decibels. This morning it was at 2:11am. He excused himself from the bedroom, went to the central bathroom, just in case the little ones couldn't hear him perfectly well from the master bath, and puked at the top of his lungs.

We called the neighbors to apologize this morning for waking them.

Bert started shortly after him. If there were a tough man contest in this house, Bert would win, hands down.

Could somebody just tell me though, how are one's vocal chords involved in puking?! Last I checked this is a GI event, no trachea or vocal chords involved. I can puke in near silence. Is this a genetic thing like having a trumpet for a nose (the Chief has this too, he blows and you'd swear he was first trombone for the symphony) or like curling your tongue into a straw shape, or does he do this just for drama?

Crazy Mixed up Stuff

Schmoozer: His diagnosis looks like either childhood migraines or Cyclical Vomiting Syndrome. We are going to try treating the mirgraines proactively to determine if that helps. Here's hoping!

Bert: Started new school yesterday, and did awesome. This is truly the place for him, and I am so thankful he gets to attend this school. The developmental psych believes that rather than a true autism, he may have autistic symptoms secondary to Sensory Processing Disorder, ADHD, and of course the Cognitive Impairment he has with his Down syndrome. He wants to treat the above, and see how it goes. Here's hopin'.

Beaner: The rockinest kid around. She is such a spunky, wonderful soul, her heart is so beautiful. What an amazingly blessed mommy I am! She has fantastic grades, a heart for Christ, and a love of life. WOW!

Rockstar: Every once in awhile it just hits me square in the face just how crappy it is being her. She's got brothers in her dad's house, sisters in her mom's former husband's house (who is now remarried, so her sisters have step sibs and she has a step mom of sorts). She's got us here to parent her, but when you start at age 13-1/2 how do you really feel like you belong in a family. She's got a gazillion grandparents from all of these parents, and her original only set of grandparents who did nearly 40% of the job of raising her till the age of 13. UGH. What that kid hasn't been through....

The Chief: Is probably getting a pink slip today. Our stupid state cannot settle simple budget issues like raising the price of a deer tag from the very low cost of $15, or a turkey tag to more than $4, so instead they are laying off Conservation Officers to fix the budget. That sucks, it just really sucks. We got past one scare, and here we are face to face with another.

Me: I'm just mom.

Now Serving

Welcome to The Smugglerschmoos.

Today we are serving a fine selection of viral infections.

To start, we have the Bert Special, our first, and still most famous. That selection comes with thick, yellow boogers, a cruddy cough, and ear infection with drainage. On the side we have a fine selection of Delsym cough medicine and Ibuprofen. We recently added Amoxicillan to this one for Otitis Media and Sinusitis. This is by far our finest and most complete offering.

The LeeJo is the Chef's Special. Not only do you have a runny nose and cough, but a sore throat and throbbing sinuses are complimentary. We are pleased to have a lovely appetizer of a random selection of kid snot smeared in a lovely plating technique. Of course there are frequent night-time awakenings added to this lovely mix. The recommended beverage selection with the LeeJo is Alka Seltzer Plus Cold, and plenty of water and tea.

The Schmoozer also offers a wide variety of ailments. He specializes in the face-covered-in-snot-sneeze, the low grade temp, and of course, his personal favorite, vomiting. The Schmoozer comes with Tylenol, Pedialyte, and frequent bathing.

The Rockstar is a stomach-ache and tears salad. Light and fruity, with a dramatic flair. Served up with a lovely Ginger tea and warmed rice pack, the Rockstar is the perfect side for any heavy virus.

The Beaner is a scrumptious blend of light sniffles, head ache, sore throat and stomach-ache. A fantastic lay on the couch all day seasoning is added, and Tylenol as needed with plenty of lemon water sets this plate off nicely.

The Chief is similar to the Beaner, but with far more whine added. The Chief also adds his own nutty flair of broken-fourth-toe-on-left-foot, that is certain to make anyone howl and roll around on the floor. The Chief comes with ice, Alka Seltzer Plus Cold, Tea, and did I mention whine?

All of today's specials include Ibuprofen, boatloads of nasty laundry, and lots of warm comfy blankeys. Watching Scooby Doo with the family is optional.

I am participating in a blog challenge issued by "Unringing the Bell" to blog each of the 31 days in October for Down syndrome awareness. October is Down syndrome awareness month, so I'm all about it!

The Chief is working today. Praise the Lord, our legislators managed to get their heads just far enough out of their collective bootys to manage to get a last minute budget passed late yesterday evening. One big concern alleviated! Praise GOD!!!!

I have a very angry Schmoozer today, so I'm off to tame the wild beast.

Love Sunday

OK, so I suck at memes. There is no "Love Sunday".

Yesterday I saw those shoes sitting in my garage, and my heart swelled, I felt warm all over. Those shoes represent my husband, and he is indeed a fabulous man.

Tomorrow, he is off work without pay, courtesy of our lousy Michigan legislators. We'll see how it all goes.

Beyond Overwhelming

This is what happens when I blog.


How can all this be happening in one house?

The Chief will be laid off for an indefinite period of time starting October 1 because our state has blown the budget so badly that they cannot afford to allow the state employees to work.

We are in the midst of ripples still from the threatening message Rockstar received last week, and our response. And she has been a grumpy, moody, ornery beast of a child to live with lately.

We are now in the full throes of decision-making regarding Bert's schooling, and in the process of getting a psych eval and behavioral diagnosis which I still believe is likely on the autism spectrum.

Schmoozer is sick again. So far we are keeping him this side of the hospital, but his tummy is over-reacting to something again.

Each of these individually would be enough to throw a typical family into a bit of a tailspin. I honestly don't know how we're holding together, I just really don't. Must be a whole lot of grace flowing our way.

At least the University of Michigan football team has won a couple games.

Beautiful

Have you ever had the pleasure of watching someone you love do exactly what God made them to do.

My amazing husband, 1 year ago today, started his job as a Conservation Officer for the DNR. He endured 22 weeks of academy training (those with military say it is 22 weeks of boot camp, but with weekends off), then worked away from his family for an additional 5 months. Now he is back home, with us, and doing the job he was born to do. He is a passionate, ethical hunter and fisherman, and avid outdoorsman in every aspect. He is a law enforcement officer by the very nature of his personality, and now the two have become one, and he is livin' large.

The joy and pleasure he gets from this is beyond measure. He comes home from work happy and energized. It pure sweetness to see him so full of life.