Is There a Point to This?

I want to be very clear. I am not blogging to be "influential" or to sway opinions. I'm just putting a bit of myself out there into the world, for fun, if you will. I have no political or social ambitions hidden within these pages. No, it's just me.

But in my heart of hearts, that very tender place inside of me that loves my family so much I cannot put it onto this blank page, I do have one itty bitty hope.

I hope, sooner or later, someone will read this and see how very ordinary I am. That someone will stumble in and realize that if I can do it, they can do it too.

I have no fancy notions that it's easy to raise special needs kids. I have faced far to many challenges with my kids to propose that. But it's doable, it's enjoyable, rewarding and fun. Sometimes I get to my very end and in tears inform God that he got the wrong person, that I'm not cut out for this. I always come around, and see that indeed, this is where I'm meant to be, and it's a beautiful place.

So please, go from here with the idea that you CAN. What is God asking of you that seems too much? You CAN

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.

Climbing and Opening and Escaping, Oh My!

Schmoozer has taken to climbing. He's a whopping 30 inches at 21 months, so he's big stuff, ya know. He climbs on the coffee table and shouts out calls to all who walk by in his biggest, loudest voice. Schmoozer may not be much for size, but he's got a voice, loud and strong. Ya just can't miss him.

Last night the Chief walked in from hunting, said "hi" and grabbed his keys to move his work truck. That must not have sat well with Bert. "How dare he come home and walk right back out?!" So Bert went to the window, unlocked it, opened it, pushed the screen out, and climbed out, just in time to walk right behind the truck the Chief was backing into the drive.

Fortunately he was seen in time, and no tragic incidents took place.

I just wonder how the child who can't/won't cut with scissors or draw a straight line or circle can unlock a window for which the lock is at the very end of his reach, out of sight. The only answer is motivation.

Beaner piped up at supper saying, "It's weird being me!" We went on discussing all of the ways in which she is so far from typical, even though she herself is as typical as the grass is green. Yes, Bean, it's weird being you, and it's weird being me too!

Ya Just Know

That everything will be OK at the appointment when your "non-verbal" kid starts singing "Awesome God" with the radio on the way to the appointment.

Bert

I'm gonna be frank. Bert is by far the highest maintenance kid of all the high maintenance kiddos I have. I'm pretty sure that if I crunched numbers he would be in far more blog posts that any of the others. (I don't want to actually crunch the numbers, I'm afraid it will be overwhelming). No matter what else is going on around here, Bert is at the forefront. The other kiddos have trials that come and go, but he is always up there in at least the #2 position, if not #1 for needing attention.

This week, once again, Bert is at the forefront. I can't believe I haven't posted more about his new school. We are finally getting him into a very structured, all day 5 days/week program that runs year 'round, this year going until mid June, then reconvening in mid July. They have an incredible Sensory Room, and I believe will be a place where he can finally actually meet some IEP goals (I hope). Friday we hold the transfer IEP, and set a start date based on transportation and the hiring of the new aid. (Yes, they are hiring and aid to get him in there.)

But prior to that, on Wednesday, we go for part 2 of his psych eval. The first meeting, I went and discussed my concerns, this one, he will be evaluated hands on while "playing" with the neurodevelopmental psych and the AI specialist. I believe we will go home with a diagnosis, and I believe it will be PDD-NOS.


Despite the obvious stress of appointments of this type, I feel as if I'm on the very brink of a breakthrough. If not in Bert's behavior and learning, then in getting him what he needs. The sheer fact of the matter is that I'm not convinced we will ever really have the breakthrough of development that he always appears to be approaching. Only time will tell that. Our breakthrough is in management of our resources. I hope to have Bert settled in enough so that his needs are not always at the top of the list. So that I can have more energy, more joy and pleasure in all of my kids, so that he will not always have me totally tapped out. Here's hopin'!

That kid

My son is that kid.

When getting him from the church nursery this morning, the attendants had to explain that his pull-up was still dirty because he wouldn't let them touch him to change it.

Then that his sleeve was wet because he snuck into the bathroom and played with in the toilet.

But he didn't escape completely out of the nursery, and with the bars on the windows (put there for the benefit of his safety) he doesn't lean against the second story screens any more.

Sensory Diet

OK, so we get our official Sensory Diet for Bert today. Here are some Highlights:

"Need or Problem: Low Registration, Seeking, Sensitive, Avoider (circle one)"

Um, they're all circled....

Then,

"Basic Sensory Problem Difficulties with vestibular, proprioceptive, oral, touch, autitory, multisensory processing; difficulties with modulation."

Um, that kinda means that he has every sensory issue you could come up with, he doesn't sense smell, but since that's not really bothersome to him, it's not listed.

Is it any wonder I couldn't come up with a good Sensory Diet by myself?

Off we go to get a medicine ball, vibrating massager, and a Theraband.

Gluten Free

Due to Schmoozer's GI issues and Bert's AI aspect, we are looking into going Gluten Free. Seems overwhelming right now. Not sure even where to begin. I'm not wasteful, so it would kill me to just throw out all of my gluten-y food.

Big sigh.

Wordless Wednesday~Bathtub escapee on the lam

Here we are

I am still getting it down. I missed yesterday, but had an extra post last week, so I'm still on #14 for October.

Schmoozer is up in the hospital again. We have a fabulous nursing student who is pulling him around in a wagon right now, so here I am. He keeps having these bilious vomitting episodes, which with his history of Hirschsprung's disease, lands him in the hospital. This time they have done a metabolic profile, and his lactic acid levels are just over the normal range, as well as some other acid levels, so they are doing amino acid levels that have to be sent out to Mayo Clinic for reading. He also has an elevated Potassium level that they are rechecking to determine if it was a fluke or is actually a high level (evidently if the blood sits for a bit you can get a false high reading).

I don't know much about what they are telling me right now, and I'm concerned and frustrated. I'm off to google this stuff to maybe get an idea of what's going on. BLEH.

HodgePodge

I have a buttload of thoughts running rampant in my brain, so I do not have a cohesive title today.

When I look at Beaner, she doesn't resemble me, but her personality is a dead ringer for me. So as she is getting older, I almost expect her to take the same pubescent downturn I did. My middle school and early high school years are defined by this I wore a Boston style brace for scoliosis from the time I was 11-1/2 to the time I was 15. At a time when you are overly aware of your body, and feeling awkward and different no matter how much you fit in, stuffing your blossoming body into a plastic shell is devastating. My blood chills every time Beaner gets a scoliosis check.



(notice the dirt piles, the whole gasline is exposed right now.)
This is my back yard this morning. When there is a major gasline explosion due to a rusty section of line <1 mile from your house, they do this to the whole line to examine it.

Had the gasline explosion in those pictures been in the line in my back yard, Bert, Schmoozer, the Chief and I, if living would be in the local burn center, our house would no longer be here in it's current form--Rockstar and Beaner weren't home at the time of the explosion. So though I don't relish having my backyard torn up, I am very happy to see it!

Finally, in about 3 hours I will be visiting the school we plan to transition Mr. Bert into ASAP. From the description of the parents and professionals with whom I've discussed this school, I expect an angelic chorus to break out when I pass through the entry doors. It is a totally self-contained environment, the Development Center. While Bert is there, there will be absolute zero inclusion, so if he does become ready for inclusion, he will be transitioned again. I fear that I am too excited and have too high of hopes for this new school and classroom. From the moment I entered his current school, I intuitively knew it wasn't for him. You are never more than 2 feet away from something more interesting than calender and circle time. It is cluttered, visually and physically. I so wish I had known all of my options. Bert's current teacher, Schoolmarm, is a darling woman, but she is utterly clueless about my son. She spent the majority of her 1:1 time with Bert last year working on object permanence. She didn't think he had it mastered because when she put a plain wooden bead in her hand he didn't point to the right hand to get it back. Ahem, Schoolmarm, try something interesting. When I found out she was doing this, and gave her Smarties to use instead of a wooden bead, he got it every time.

So we shall see. Obviously if there is significant improvement in settings he will change, but I just so hope this is all it's been talked up to be!

What to blog, what to blog.....

Blogging daily is a stretch for me. I have one day with 2 posts, so I don't have to blog every single day, but I want to save my skip for when I really need it.

So, I'm gonna ask you all to comment. I believe that sooner or later, everybody has their "for such a time as this". A time in life when you know that God has allowed certain things to take place in order to call you up for a task that he created you to do.

I have 2, the first, of course is trisomy 21. I know that some of the gifts and talents God has given me have been more than remarkably useful in raising and advocating for my sons, and that I have learned and gained as much by the experience as I have given, probably more. The other is my Rockstar. I know without a doubt that we were asked to step up and become her parents. It hasn't been easy, in fact, far more challenging than having 2 disabled sons, but by God's grace alone, we have managed to get by, learned a lot, and maybe, just maybe, been beneficial to her along the way~that remains to be seen. ;-)

So what about you. Have you had "such a time as this" yet in your life? If so, please do tell!

Oh, and if you like football, wasn't that a crazy cool game between Dallas and Buffalo last night?!

Characteristics and misnomers

I'm guessing that any one of you reading this would recognize a person with Down syndrome if you ran into them at the grocery store. But would you be able to qualify those characteristics that you would recognize as Down syndrome?

The first thing you would notice is the face. Probably the slightly upslanted, almond shaped eyes, sometimes with white spots on the iris, with a fold at the inner part of the eye, by the nose. The nose would typically be rather flat and small with a wide bridge to it. Lower ears that may fold in a bit at the top. More subtle, less noticeable are some of the other characteristics. A small occiput (back of the head), a single long crease on the palm of the hand, a wide gap between the first and second toes, with a pronounced crease between. Teeth can be late, emerge in an unusual order, and be pointy. Low muscle tone, and extreme flexibility are also very common. It is also common to see only two knuckles on the pinkie, a slightly inward curved pinkie, and webbing between the last two toes. A person with DS will typically be short, average adult height is 5'2" for a male, and about 4'6" for female.

When Bert was born, one of the most difficult aspects for me was that I thought he was beautiful, but when I looked at adults and older kids with DS, I didn't think they were beautiful. As he's grown, I still think he's beautiful. His unusual features became stronger with time, but it doesn't matter. He's my son, and he's amazing. Period.

The hardest thing for me, as I go into the world with my boys, is to hear misnomers, over and over again. "They're always so happy." (where's the vomit emoticon?) Can I tell you something? My son's are not always happy. Ironically enough, they have a full range of emotions, and can feel anger, sadness, frustration, joy, calm, and any other extreme emotion you would like to name. Bert especially, with the behavioral aspect he has, is far from always happy. He has regular meltdowns of universal proportions. Schmoozer has had more than his share of sickness and discomfort, and though he copes well with it, he is often anything other than happy.

My dear mother remarks at how surprised she is that my kiddos have so much personality. She has never known other kids with DS to have such personality. I'm guessing that in the comfort of their own homes, and with people they are familiar with, the other people my mom knows with DS also have plenty of personality.

They're so strong. That one makes me laugh. One of the biggest challenges for someone with DS is low muscle tone. Most people who reference the strength of a person with DS, is thinking of a whopper hug they have gotten. If you have low tone, you can hug really tight, but don't have the fine tuning to hug in the middle, or lightly.

Affectionate? Yep, that one I have to concede. My boys are huggers, kissers and absolutely over the top affectionate, and I love it! That may not be true for all people with DS, like any other group of people, we're speaking of individuals here, and that's the beauty of it.

21 things about my kids

1. Beaner hates tags, I had to put cloth tape over hers before church this morning.

2. Rockstar has major sensory issues, I'd love to do a sensory profile on her.

3. Schmoozer is on low dose antibiotics for bacterial overgrowth in his GI tract, and is a new kid. (not literally)

4. Bert is right now "stimming" with dinos, watching the movie Dinosaur.

5. Stimming is something Bert does all day long, he moves things to watch and feel how they move, and this helps to keep him calm.

6. Rockstar took Beaner to church this morning because I have one of those colds where my nose is dripping non-stop. (pleasant picture, huh?)

7. I think Schmoozer is finally going to get his front top teeth.

8. Schmoozer currently has front bottom teeth and top molars, and nothing in-between.

9. Schmoozer's latest milestone is cruising like crazy, he thinks he's really cool.

10. Beaner is currently an all A student.

11. Rockstar is excited for Sunday School today.

12. Bert got tired of the dino stim and is now in his toybox, bouncing and throwing toys.

13. I think Schmoozer finally made it over 20 lbs.

14. Beaner is the second tallest girl in the 3rd grade.

15. Rockstar went to church in 5 inch heels this morning, I think this has something to do with her major crush on the youth director's son.

16. Bert is now walking around the house banging a dino on every wall as he goes.

17. Schmoozer and Bert got haircuts this week and are both nearly bald.

18. Beaner's hair is now down to the center of her back.

19. Rockstar has driven for over a year now without getting pulled over.

20. Schmoozer and Bert are now quiet in the kitchen, which worries me.

21. Bert was sitting on the counter with a box of tissues, taking out 1 tissue at a time, holding it as high in the air as he could, and watching it flutter all the way to the floor before repeating. Schmoozer was enjoying the show.

Deeper Thoughts

The hothouse flowers are beauties,
they have grown without a pain.
Somehow I'd like to set them out,
and let them feel the rain.

With just a touch of wind in it,
though t'would break a leaf or two.
I know they'd smell much sweeter
if the felt a summer's dew.

My daughter is a darling,
and of beauty has her share.
Somehow I'd like to see her
grieved enough to shed a tear.

For something she could never help,
no matter how she tries.
T'would steal some joy,
but deeper thoughts would peep from out her eye.

~Lyndall Best



Lyndall Best is my maternal grandmother's mother. She was a small woman, modest of dress and manner. Fond of gardening, but she always wore a big sun hat to protect her fair skin. She was married to a handsome scoundrel who loved her beyond words. She was a poet. The only time I ever met her was when she was in a nursing home, at the end of her struggle with Alzheimer's. Her memory is a legend in our family, and she set a standard for future generations to aspire to reach.

Though I'm sure that she had the same instincts to keep her kids from undue struggle, she had the wisdom to see that real beauty only comes after enduring hardship.

I often worry about my girls. Rockstar's first 15 years read like a Lifetime movie. Absolute tragedy, there's no way around it. Beaner is the sole typical child stuck in the middle of a family that is unusual to say the least.

My grandmother's wisdom gives me perspective on their plight. I already see it. A third grader who knows that it's not all about her. A high school Senior, far too worried about her future and past.

No, my girls will never be hothouse flowers. They are far sweeter and more beautiful than that.

Get it Down

My day today is really busy, but I committed to 31 blog posts in October, one daily, so here I am.

It's hot in Michigan, about 20 degrees hotter than normal. Ick.

Bert hurt his toe last night. He has hypersensitive feet. This kid can fall on his face, bloody his nose and fatten his lip and cry for <30 seconds, but hurt a toe and it's an all night event.

He stuck his bare foot in the spokes of the running stroller, and peeled the skin on the bottom of one toe. Based on his response and the mechanism of injury, we were concerned that it was broken, but held off on seeking treatment. That appears to be a wise choice since he was just dancing to the Mickey Mouse Clubhouse version of the song, "Hot Dog".

Such is the course of injury and illness in a child with no reciprocal communication skills, it's all best guess. You know how with a baby you have to wait, watch and determine the level of illness or injury based solely upon what you observe? Same with Bert, my 5-1/2 year old. I've gotta say, though, we're pretty good at assessment and trusting our gut.

Advocation 101

I had a meeting for Bert yesterday in which I had to dig deep and use every last advocacy tool I have ever learned along this Special Education road I'm on.

We did have a breakthrough in forthcoming respite care though. Phew.

This is it for the day folks, I'm pooped. I'm gonna get my coffee from the coffee maker I hate since my dear, sweet beloved coffee maker died yesterday morning. I shall be in all black this week in mourning.

21 things NOT about Down syndrome

Tucker on the left, Maverick who is now with his maker, on the right.

1. We have a dog.

2. His name is Tucker, he is 11 years old (and counting)

3. His litter mate, Maverick, died last year, leaving him the most anxious, whiney dog ever to set foot on earth.

4. I have parents too, we're very close to them, but I don't ever blog about them.

5. I have sisters, 2 of them, one 5 years older than me, the other 12 years older than me.

6. I have 9 nieces and nephews, ranging in age from 27 to 5 years old.

7. I haven't brushed my teeth yet, and it's bugging me.

8. I like my feet, and Hannah's' feet are just like mine, it's the one resemblance she has to her old mom.

9. I like green pens.... a lot.

10. My cuckoo clock just struck 7:30.

11. My house is very quiet. The Chief is hunting, Bert, Bean and Rockstar are off to school, and Schmoozer is sleeping.

12. I have green scissors and a green stapler on my desk.

13. Green used to be my favorite color, but now I like Magenta better.

14. I applied for a job as a proofreader for the Reformed Church in America this week, but I don't think I'll get the job.

15. My "office" is actually a closet with a desk in it.

16. I haven't had my coffee yet, and really want it, but I want to finish this before getting up.

17. I think the Dr. Phil show has stooped almost to the level of Maury Povich, and it disappoints me.

18. I have an expired printer ink coupon still tacked to my cork board.

19. I got gas this week just before gas prices dropped about 10 cents a gallon, and that really gets my goat.

20. I am SOOOOOO not a morning person.

21. I'm going directly to my kitchen to make coffee now.