The Bell Curve

Bert had his first full psych eval done at school. This is done primarily to assess the IQ, and assist in determining placement. This is a quick explanation of the IQ bell curve. See the very bottom of the curve? That lowest percentile of people? That little tip of the bell that is <60? That is Bert. He's down in that teensy bit of bell.

I am not a delusional person. I have a pretty good grasp on the daily living and cognitive skills of my son, and I know that he functions still about at the level of a 2 year old, more or less. He turned six last week, so I have been parenting the same growing child, now 50 lbs as a 2 year old for about 4 years. We have effectively ruled out the autism aspect as instead severe Sensory Processing Disorder coupled with a very low IQ and ADHD. Honestly, I'm not convinced that the ADHD is accurate. C'mon, what kind of attention span do you expect a 2 year old with SPD to have?

Alas, it is difficult to read a report in which your child's intelligence is graphed and documented in formal language by a licensed psychologist that states your son tested low compared to his same age peers, over and over. It sucks to see a number that has been referred to as "trainably mentally impaired" or "severely mentally impaired". Though I did not relish reading it, it was like reading a story that I'd heard over and over again in spoken word. The document was newly drafted, but it was not unexpected. I was pleased with myself that I handled it as the information that it was, no big emotional breakdown required. Yet still, I can't seem to get my mind to let go of the graph of my son's IQ.

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?

Spring

I love Spring. Blessed beautiful days outside. Gardening, exercising, chasing kids...

Tomorrow, Beaner, Goober (Rockstar's lil sis) and I are going here with our GEMS group.

In other news, I have stepped up to become our new GEMS Club Coordinator. A (volunteer) job rivaling that of youth director. We have over 60 girls, and are expanding next year.

What is a mom as busy as me doing taking on this challenge? Obeying. There was a growing niggling in my heart, and I tried desperately to avoid it. Finally I made a phone call, hoping the position was full. Indeed, it was not. I shall be doing one full year of intern-type training before taking over the whole ship. I have been scared to death of doing this, but I know God is asking this of me. It has been confirmed to me so many times in these past days in Scripture and devotion that this is where I need to be. Now as my "One Month to Live" book has said, my only job as the branch, is to be connected to the vine (God). It is the Spirit of Christ who is responsible for the fruit I bear.

One Month to Live

Our Church is doing the "One Month to Live" Churchwide Challenge

Supposedly this is going to get us up and living the lives Christ intends for us. I sure hope so, and I'll keep you posted. My month starts tomorrow, but I've already sneaked a peak at the first couple of chapters.

Stay tuned for Christ's work in me and my church!

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.

Thin Places

That was our sermon title today.

My ears were pricked, thinking that this was going to address times when you are stretched a bit thin. I have been in a spiritual drought for some time, and needed some encouragement. Since I feel like the taffy pulled version of Mike Teavee, I figured this was all about me. I was wrong, and right.

Let me start by saying that we listened to Kim Hill's remix/medley of Nothing but the Blood of Jesus on the way to church, and Bert was singing. That is always a gift when my not-so-verbal son belts out a serious spiritual in the back seat, so my heart was primed.

It was GEMS Sunday, so I was with my girls in the front row. I was on the piano side, and our pianist is nothing short of prodigiously gifted. It's as if he's channeling the flow of music directly from the heavens to his fingers. He can make "Twinkle, Twinkle Little Star" sound like a concerto. My heart was moved, and my spine chilled as we opened the service in songs of praise. It's been so long....

As the sermon started, I found the pulpit supply pastor to be someone who appears to be smiling, even when dead serious. His face a light of joy, his voice harmonious and full of inflection. He pulled out a less than well-used chapter from Luke 9:28, and started reading about the transfiguration.

I cannot reiterate here what all he said, but he spoke to me about the thin places. Not places where we are stretched thin, but places where the gap between earth and heaven gets so thin that the Glory of the Lord briefly spills over into our earthly experience. As the early spring sun shone through our century old stained glass windows, the gap thinned, and our heavenly father allowed me a glimpse of his glory. It was so real, such a heart-thumping experience, that I was sure the whole congregation must have had the Theophany along with me.

As the service came to a close, and the GEMS proceeded out, down the stairs, the grumbling of some of the ladies about the negligence of not using our theme verse from GEMS for the sermon (1 John 3:1) I realized that I alone had experienced that thin place. That God's glory had broken through for my benefit alone. I was humbled to realize that my Lord and Savior had seen fit to answer my feeble prayers of "I believe, Lord help my unbelief," and push through my earthly experience to touch me momentarily.

I don't know where this will go, but I do know that I drank of living water today.

Meme Time!

The rules are to link the person who sent this and leave a comment on their blog so their readers can visit yours.
~Post the rules on your blog
~Share 7 strange/weird facts about yourself
~Tag 7 random people at the end of your post and link their blog
~Let each person know they've been tagged by leaving a comment on their blog

1. I can touch my nose with my tongue.

2. I love the show Ninja Warrior.

3. I secretly wish I was Alton Brown.

4. I have absolute zero grace or agility. I am clumsy and run into things a lot. This gave me many panic attacks while planning my wedding. I hate looking like a dork on accident, but love to do it on purpose, and make people laugh!

5. Sometimes I feel like God let me get older without becoming an adult. I will all of a sudden look around and wonder how on earth I got so much responsibility and get scared.

6. I am still an emergency junkie. It's been 5 years since I've worked EMS, but I still get this glint in my eye and get my juices flowing when I tell the old stories. That was the heyday, man! I did some really cool stuff, saw even cooler stuff, managed to help a few people out in the process, and got a life's worth of interesting stories. Every once in awhile I actually drool while watching Trauma: Life in the E.R.

7. I just realized how much of my life is invested in reality TV and got a little bit scared.

I tag Steph, from Thoughts and Things.

I tag Beth, from Journey as a Birthmother.

Angela, over at Confabulations by Me.

Chrissy at Getting it off my Mind.

Sarah at Adopting Again.

Jamie from Bringing Beauty from my Pain.

Mamasita at Colors of Grace.

__________________________________________________

I also have an award to give out. YAY me!!



The VERY FIRST person who comes to mind is Andrea! She is over at Free and Loved by a Mighty God. Andrea has a 7 year old daughter and is fostering a family of little boys, and I just love that girl's heart.

As always Tammy over at Praying for Parker gets a nod. Parker is just the cutest little dude, and his fragile health makes him all the more appealing wrapped up in his miraculous package. I just adore Tammy and Parker.

Last but not least is Kristy over at Thoughts and Ruminations. Even though she has country music lyrics posted their today, she's an amazing woman, mom, and has an amazing heart. Kristy ROCKS!!

There, I got my award and meme done. Whew, that's a lot of linkin' up to do!

I'm Never Gonna Get Tagged or Awarded Again!

At the rate I'm going in responding to the fun meme, and the award that I have recently been tagged for, well, who would blame anyone for passing me by in the future.

I assure Many Blessings and In the Life of a Child that I will attend to the fun you've bestowed upon me very soon. Thanks for thinking of me girls!

I am a bit concerned here that there are significant spiritual issues at hand concerning my attitude and frustration with the Rockstar. Please uplift her and me both and ask for spiritual protection specifically. I don't like the anxiety, fear and distress that is ever present lately, and in my gut I know there is evil at work in my psyche. It feels awful, just awful.

Thanks.

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!

What Have I Done?!

Yesterday, on the heels of a couple more snow days in which we were all blessed to be stuck inside together, Beaner made an announcement, after dinner, during dishes.

I'm never, ever, ever having kids!

Me: Why not?

Because all you ever do is work. You work to change diapers, do chores, do laundry, pay bills, cook dinner, do dishes (smile inserted here). No WAY I'm gonna do that. (yes, she was helping with the dishes)

Great, I have an 8 year old who thinks my life is utter drudgery, from first hand observation.

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. :-)

Underneath My Oven

I cleaned underneath my oven today, right after church. I knew it was icky for a long time, and it bothered me, just not enough to take care of it.

So today I got all busy and cleaned it out. Of course there was the dog hair, dust bunnies, remnants of food, and the few odd toys that had slipped underneath. There was a purple gumball (our gumball machine has not been in service for months). There was what once could have been a red peanut M&M. There was a sticky mess that was a spill that went nasty. I expected all that, in fact I expected worse.

What I didn't expect was that I found useful stuff. I found the lid to a container that I had saved, even though it was useless without the lid. One trip through the dishwasher and I will have a useful container again. I found the red sugar sprinkles that were MIA over Christmas. The container is still sealed, so I think I will wipe it all up and use them for Valentines cookies. So after all the work was done, I felt good and a bit more whole.

My spiritual life has been in the same ignored state as my oven. One of these days I'll have to get around to moving some heavy appliances and cleaning out my faith.

My Frontal Lobe

***Disclaimer*** I am not denigrating anyone, I'm 2/3 serious with this.

Have you ever heard of Pick's Disease, or frontal lobe degeneration. I'm off my BC patch for my week every 3 months to menstruate. When I'm not on birth control I have nearly all the symptoms of this disease. Seriously, my frontal lobe is in jeopardy.

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.