First Dance Recital

Wednesday 30 May 2012

A couple of months ago Kayla started taking a dance class at the Y. This past weekend was the recital. I think she did pretty well for being her first time performing on stage (outside of singing with her class at school) and only being in this class for a couple of months.

She was so excited to get flowers from Lucas...and she wanted her moment in the spotlight. All the girls were sitting on the floor while the instructor was giving a speech and her own thank yous. Kayla decided to stand up right in the middle of that and say her own thank yous. She did that twice.

I think it's safe to say she has no problem performing on stage!

Make a video - it's fun, easy and free!
www.onetruemedia.com

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School Decisions

Monday 28 May 2012

If you have a school-age child with special needs then you know what this time of year typically represents - the IEP (Individualized Education Plan) meeting. I have to say, these meetings can be down right exhausting.




We are getting ready to have our 3rd meeting regarding Kayla's placement for the next school year.



A brief background on how school has looked for Kayla the past 2 years. She is zoned for school A. When we attended our first meeting there we were told that "School B is the school kids with mild mental disabilities attend when School A is their home school, because not all schools in the district have the program for students with mild mental disabilities."

That shouldn't be how students are placed; they shouldn't be grouped together based on their disability level and then have it pre-determined where they will attend school because of the 'program' they are being placed in. IDEA states that students with disabilities should be placed in a general education classroom in the school they would attend if they didn't have a disability, with supports, accommodations, and modifications to the maximum extent possible.

We voiced our desires for having Kayla attend School A, but for reasons I'm not getting in to for this post (long story) she goes to School B.


In 1st grade she went to the general ed (GE) classroom for most of her subjects except for language arts (special ed/self-contained room) - which is a pretty good chunk of time. Her time being included in GE classes was a little more than half her day. For her IEP last year (2nd grade) it was recommended that she have language arts and math in the sped room. I wasn't totally on board with that, but by the end of the meeting relented while stating my goal was to have her gradually be in the GE class for more and more time.

Based on the change to having math in the sped room this made her time in GE classrooms less than 40% of her day, something that bothered me, but, yes I agreed to, because maybe it was best for Kayla. You don't know what works until you try it.


For the last 2 months it was agreed to have Kayla go to the GE classroom for 30 min during their phonic/spelling time (she's had no spelling in the 1st/2nd grade sped room - they don't work on that until they go to the 3rd-5th sped room). Since going to the GE room she's now been exposed to, and working on the STEPS program like her typical peers are doing. She learned to identify 14 of 24 sounds from the 'green' set. Spelling has been a bit of a struggle, but she has learned to spell a few words (palace, penny, button as an example) but she's able to differentiate between the correct and incorrect spelling of the words on her list. She's also able to read the words on her spelling list now - words she wasn't exposed to, or learning to read, in the sped room.

I've tried it this way for 2 years and now I would like some change. We're requesting her LRE (Least Restrictive Placement) be the GE classrooms. I read studies (like the one I posted about here) showing that kids with disabilities who are taught with their typically-developing peers in the GE classroom do better overall on math and reading tests. I hear examples from so many other families across the country who have their child in GE classroom with accommodations and modifications and it's working successfully.


I'm not denying special education services because that's exactly what special education is - a service, not a place. I'm just asking for those services to take place in the GE classroom with collaboration between sped/GE teachers and therapists. I'm not opposed to ANY pull out services at all, I would agree to having some extra help in math and reading in a resource room like the rest of the student body has access to. 


It was suggested if we want to put her in GE classes full-time, as her LRE, that it might be better to repeat 2nd grade and do it that way. I can understand, to a certain point, the pros of doing it that way ... but I'm not convinced that's the best thing to do at this time. Kayla is probably not going to 'catch up' to typical peers on grade level, but that isn't the point to having her in GE classes. The point is to have access to the general education curriculum alongside her peers ... something she didn't have access to in the sped room.


It's all so overwhelming to think about. These seem to be the choices/decisions we have to make:

- Repeat 2nd grade with LRE being GE classrooms
- Continue to 3rd grade with going to a 2nd grade math class
- Continue to 3rd grade with getting some resource help for math and language arts (how much time is TBD)
- Then there is the possible discussion of transferring schools and having her at her home school

My other issue with her not being at her home school is if she continues at School B for 1st-5th grades she will not be at the same middle school as those kids will go to - because they will be zoned for a completely different middle school than the one she would be zoned for. So she would go to a middle school where she doesn't know any of the kids.

It's a common refrain to hear "You're the parent, you know what's best for your child." and "You'll make the best/right decision for your child because you know her best." But I'm finding that difficult to believe. I don't feel like I've made the best decisions over the last two years and in fact feel like I've failed her in my lack of adequate advocating skills.

And how can you truly know what the right decision is to make, especially when there are more than one paths to chose from? You can't know what is the right decision because you can't go back and see what it would be like if you had chosen something else. I thought I did right by her on last year's IEP, but at the end of this school year I don't feel like I did make the right choices.


And what I want for this school year might not end up being the right choice either, but Kayla deserves to be given a chance at an education in the GE classroom. She deserves a chance to have the right supports and services to make it successful. Maybe it won't work out for her. Maybe she really does need a self-contained room for the core subjects, but it's successful for so many other students, and we won't know until we give it a try.

So many colleges are now offering students with disabilities a chance and those colleges are fully inclusive. From what I've read about most programs to date - none offer a chance at going to college with the understanding that the students with disabilities will be educated in a self-contained room in college. So how can we be expected to prepare our children with disabilities for the possibility of going to college - and expect them to succeed there - if they aren't being prepared for it during the elementary, middle, and high school years? How can I expect her to make the jump from self-contained rooms throughout her school years, to a fully inclusive college experience?

I'm not saying it's going to be easy, change usually isn't, especially in a district that doesn't typically do things this way, but change can be a good thing too.

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"Pretty Pearl Necklace"

"Pretty Pearl Necklace"

She takes it on the chin
With a cute, playful grin;
Running fresh on her chest
As it rests on her skin.

I stand tall against the wall
And extend my long neck
For her long neck.
Cute face.
Big hips.
Nice lips.
Wet tongue.
Warm neck.

Her palms sweat
And her cheeks swell.
Eyes well with tears.
Mine from the ringing
That fills my ears
When she begins to hum.
Hers from me treating
Her voice box like a drum.

Percussion with precision.
Neighbors love to listen.
She just makes it glisten.
She doesn't ask for permission.
Nothing beats a tongue bath
From such a filthy mind.
She kept her plan in mind
While I took her from behind.

Nothing more to find.
No test of my physique.
Just a fist full of hair
And a slow grind technique.
She says it's no fun
Until her makeup runs
And when I find my target,
She'll help empty the gun.

She's nasty.
She's so damn classy.
Curls ringing wet with sweat
And her attitude is sassy.
She wants it badly.
She knows the directives.
She just adds her touch
To make sure she's effective .

Those tonsils are colossal
And when she closes her throat,
She takes it full throttle.
I see why she gloats.

She lets me take her
For
A
Ride

As I stare at her
Beautifully
Bare
Backside .

She just opens wide.
She wants me to glide.
Tongue moves side to side.
I just have to slide.

She wont close her eyes.
She won't miss a second.
Saying "I'll take this one first;
But I'll be back for seconds…"

A force to be reckoned.
She won't let me free.
She devours me in sections.
She can't wait to see…

…………………………………………
…………………………………………
…………………………………………
…………………………………………

My soul just ran away.
All that I had lobbied
Is now on bright display
Across most of her body.
All she does is smile.
She enjoyed the show.
I just lost a pile.
She just lets it flow.
She loosens her grip.
I convulse and trip.
She licks her lips.
She let's it drip.

As she cleans the tip,
She says that she's impressed.
Amid a slow rub and caress,
It goes well with her dress.
I guess that makes me presidential.
She's my mistress and first lady;
Because she's so instrumental
In being the boss's baby.

The alpha male
Delivers all the mail
To the main lady.
She wears me like chain mail:
Good gravy.
Goo.
Batter.
It doesn't matter…………

…………when I see that chin
With that cute, playful grin,
That bright, glossy chest
And that wet, glistening skin……

Written By: Devin Joseph Metz

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Dancing Under The Stars

Wednesday 23 May 2012

Last weekend the Charleston County Parks and Rec Department and the Lowcountry Special Needs Adaptive Programming Coalition hosted a night of "Dancing Under the Stars" at the Mt Pleasant Waterfront Park & Pier.

There was a threat of rain and the possibility that the dance was going to be moved to an indoor location; which just wouldn't have been as fun as dancing out on the pier. Thankfully the rain held off and it was a beautiful night with a gorgeous sunset.

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Yearbook Labels Students 'Mentally Retarded'

Tuesday 22 May 2012

A high school in Texas wanted to honor its Special Education Program with a section in the yearbook.

This section, meant to honor the program and students, states:

"Some of the disabilities the students in the Special Education Program have are being blind, deaf or non-verbal … (students' names) are both blind and deaf, as well as mentally retarded."

Say what?! That blurb is to honor the Special Education Program? Just how does that statement honor the program, much less the students?

The school district did confiscate all the yearbooks. The reason given was "a slight mistake that needs to be fixed." A slight mistake? How about invasion of privacy for one.

The district went on to say that the section has to be removed because it didn't obtain parents' permission to run photos of their students.

I seriously doubt putting their photos in the yearbook is the issue. If your child attends that school, and is there for picture day, their photo will be in the yearbook. What about all the other candid photos and photos from all the events throughout the school year that are included in the yearbook? It's a given if you're at the school you just might find a photo of yourself in the yearbook.

The issue isn't about using their photos. The issue is about disclosing students' medical information and diagnoses. That has to be against the law.

It's also no one's business what disabilities those students have. How is that honoring the program by labeling the students with their disability? If they wanted to honor those students and that program why not with something positive they achieved during the school year? Why not pictures of them accomplishing something together?

The rest of the student body didn't receive personal labels attached to their pictures.

I want to know how this ever passed inspection for publication; isn't there a faculty advisor? How could anyone think that was ok to print?

People with disabilities are not their labels and need to stop being referred to as such. They are students just as much as the rest of the student body and need to be treated with respect and dignity.

 

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"Mission Statement: Society Of Poets"

Monday 21 May 2012

"Mission Statement: Society Of Poets"

Found love in a rhapsody.
Everything I would become
Laid its groundwork after me.
Might have been more than love.
It think it was life, actually.
It shaped how I approach things
And rearranged my faculties.
No one can take that from me.

Found love in a rhythm.
A rite of passage.
Not just a routine,
Ritual or rhyme scheme.
Every path will be different;
Even if we share the same dream.
I learned that one incurs limits
By just focusing on the theme;
So I look for substance instead
Because if status clouds your head,
You won't remember what you've said.
Your words are better off dead;
Stretched wide across ridiculous themes
Crucified by unnecessary limits
That have openly chocked your dreams.
A path of gimmicks is never different.
The same ritual and rhyme scheme
That fell victim to some routine.
Invoke your own rite of passage.
Love the rhythm in your means.

I'm good if few know me.
I'm so far from Phenom
And much closer to mystery;
So I'll be the enigma.
Can't trace my steps.
Can't recognize my signature.
I've observed how overexposure
Can be a damning expenditure.

I buffer light when I write.
It's on display all day
And it glows so bright at night.
I've yet to lose my way.
Words I've yet to write,
Things I've yet to say,
Soldier willing to fight
For those willing to pray
On behalf of the many
That some see as the few:
Those who ran out of paper
For the picture that they drew,
Grief stricken with labor
Desperately hoping for something new,
Bloodshot eyes that cry
When their thoughts cannot be processed,
I write love in lieu of them.
I'm dedicated. I might be obsessed.

You can't take this from me.
There's some levity in my faculties.
I've learned how to approach life.
I give it back actually.
This is my labor of love:
Groundwork that thrives after me.
You never know what you'll become
Until you find love in a rhapsody.

Whether salty tears are savored
Or you tend to smile and grin,
Never throw away your paper
And don't dare abuse your pen.

Protect and promote your craft.
Take pride in how you show it.
Denounce the crass for working class.
Create a Society Of Poets.

Written by: Devin Joseph Metz

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Conversations With Kayla

Sunday 20 May 2012

Joe was working on spelling with Kayla. He wrote one of the words correctly and then wrote it incorrectly and asked her which one was spelled wrong. She pointed to the incorrect one. He asked her "what is wrong with that one?" trying to get her to explain why it was wrong - what letter didn't belong or was out of place. She said, "It's not right." He asked, "Why isn't it right?" She said, "Because it's wrong." He asked, "But why is it wrong? What's wrong with it?" She said, "Because it's not right!"

I asked Kayla if she saw her teacher from last year. (She passes by her classroom everyday and usually pops her head in to say hi.) She told me, "Yeah!" Then I asked, "Did you peep your head in and say hi?" Kayla said, "Yeah! And I sat down." Me, "You sat down in Mrs C's room?" Kayla, "yeah!" Me, "Where did you sit down?" Kayla, "An empty spot."

I found out later that she never did go in that classroom to sit down, so I don't know why she told me that she did. Guess he's making up stories now. Either way, true or not - I loved her answer that she sat down in 'an empty spot.' As if she was saying - well isn't it obvious? Where else would I sit down!?

She came home with a little bruise on her eye and when I asked her what happened she said she got hit with a ball in PE. I asked her if she went to the nurse and she said yes. I asked if she got an ice pack and she said no that Nurse Aurdra said it was ok. There are times when we just don't know what the actual story is because she'll give us a different answer to the same questions 5 minutes later. So most times I'll ask her about something several times to see if she's consistent with her answers. On this day I asked her 3 or 4 more times about the bruise. I asked her again if she got an ice pack (because she likes to have one for the littlest of things so I was surprised she didn't get one for this.) She was obviously tired of answering my questions because she told me, "No! I told you!"

 

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"Dirty Photos And Dream Catchers"

"Dirty Photos And Dream Catchers"

Dreamt about you last night.
Yeah I know: Fancy that, right?
Went back some years
To our umbrella under moonlight,
Our favorite spot to eat late night
And long embraces met by sunlight.

I really miss that.
I guess I did act
Like it would surely leave me.
I know it's never that easy.

Not when thoughts of you
That were once among the few
That used to vex me daily
Are now all that soothes the ailing;
The sailing of a soul
Across an ocean of mediocrity;
Gentle winds yet choppy waters.
Diving in won't purge hypocrisy;
So I try to stay afloat
Until I reluctantly land
Into the cold lap of lovers;
Bound to slip through their hands.

Perception resembles chain links:
Joined at the arms without hands,
Pulled from both ends as it stands,
Intertwined in a much larger plan,
Forever bound by intricate means.
No deliberate charge of contact;
But our heartstrings coil in unison
So far away yet still intact.

That was my daydream.
I felt your touch;
But you were so far away.
It was such a rush
To say it was just mid day.
I could taste you
Yet I never faced you.
Lines I couldn't trace through.

Stuck there in my chair
With thoughts of you straddling me.
Two hands full of your hair
As we engage in battle playfully.
I willingly lose this tussle
As I succumb to thigh muscle.
This is too much to contain;
But you know I love the pain.

It was just a familiar strain.
Nothing real for me to gain.
Just a lonely closed office
And garments riddled with stains.

It's almost too dangerous to think.
I must sever these chain links;
But I'm on the fence instead.
To this day, you remain in my head.

Sent you a text a few hours ago.
Was headed to our spot.
Wondered if you wanted to go.
Hoped that you were in town.
Not like you'd come around.
We both had our convictions,
But my addiction tracks you down.
I need serious help.

Found those explicit photos.
They lay beneath some socks.
Small memorials to concealed lust.
I kept the keys to those locks.
Said I'd engulf them in flames,
But I remember pet names.
Said I'd cut them into pieces,
But this host still harbors leeches.

Told you I have a problem.
Try as I may,
I relive our past every night
And dash my future during the day;
But I've planned my getaway.
It's foolproof. It never fails.
Nocturnal musings that come my way
Will follow what hangs from this nail.

I'll sleep good tonight.
No cottonmouth or cold sweat.
No bed sheets left sticky and wet.
No lustful mind struggling with regret…

But thoughts are still in my head.
Daily tents are pitched in my bed.
I still haven't changed the locks.
I mailed you what was under the socks…

Written By: Devin Joseph Metz

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tiger skin mosquito cape

Saturday 19 May 2012

Probably a lot of beautiful human beings have blogged since February. So, okay, I'm not one of them. But somewhere out there (I can't believe Blogger still lets you randomly scroll through blogs by clicking Next Blog, seems like Google will kill that soon, will replace it with their sniffs at circles of influence, as if the only meaningful connections were categorical and historical, no love for having the same mole as a bus stranger, just kidding Google, you know you're my big G) people have blogged. What have I done?

Well I got a new job doing cicada amassment for a snowboarding company, where I find and install cicadas to make snowboards louder. I'm moving back to North Hampton, which is the area directly north of wherever former Colorado Rockies ace Mike Hampton lives at the moment. This is called a quantum residency arrangement. Here's most of what's near me right now: empty Smartwater bottles, packing tape, a capo, a Ben Kopel Victory button, a canvas print by Anna Emelia Hoffman, who I went to junior high with in Oroville and who now insanely lives four doors down from where I'm soon moving away from in Baltimore, a Publishing Genius tote bag, a valiant little fan, my butterfly shoes, a harmonica holster, a Raid can, a multi-colored chewtoy rope, and a VHS of a Leonard Cohen performance my mother taped for me off PBS. Here's a belated Mother's Day video present for the mothers out there and for the Mr. T fans who have never been able to conceive:

Here are a few cool books I've read/am reading since I last blogged:

Fuckscapes — Sean Kilpatrick
After Claude — Iris Owens

Flatscreen — Adam Wilson
Partyknife — Dan Magers

Hallelujah Giant Space Wolf — Dan Bailey

Together We Can Bury It — Kathy Fish
Baby Geisha — Trinie Dalton
The Sisters Brothers — Patrick DeWitt
Too Big to Know — David Weinberger
Toward An Anthropological Theory of Value — David Graeber
Victory — Ben Kopel
The State of Kansas — Julianna Spallholz
These Dreams of You — Steve Erickson
Moby Duck — Donovan Hohn
The Black Forest — Christopher DeWeese
I Am Your Slave Now Do What I Say — Anthony Madrid
Hydroplane — Susan Steinberg
The Coming Insurrection — The Invisible Committee
For Out of the Heart Proceed — Jensen Beach
Because It Is — Kenneth Patchen
Gould — Stephen Dixon
The Information — James Gleick

Had some fun times in Boston, DC, and Richmond. Uh, I know that's boring, so here is a smoosh of everything that's in my cell phone's drafts folder no matter how embarrassing it is. I can tell you right now there's a weird preoccupation with hippies and the people of Asian countries:

• Motherfuckers have their ways.
• 4 yr old in a college sociology reading study / doing better than both of us.
• Two Bawlmur hillbillies charmingly swapping child abuse stories on the bus while one has a giant cat scratchpost castle. [seriously, what are those called? Carolyn says "cat castle" is fine. The next one is really embarrassing. But, you know, full disclosure and all that. This is a blog, right? This is 2003? Right?]
• Tell the gods of poetry I'm 25 and listening / to covers of One Headlight on covered-ass bridges. / 1-800 Mattress, worldwide logistics / Who knows how legit this is cuz baby that's the business.
• He was watching me to make sure I was watching it. 
• Alarm salesman / horses in Iceland / the sorting / getting knocked down.
• Don't pretend u don't exist.
• Baguettes for drumsticks.
• Death fantasy baseball.
• A/B testing in the stutter motif.
• U can no longer watch tWo girls one cup like u can no longer visit the grand canyon.
• Thick with tick sex.
• Albany Bulb Poseidon sculpture near horse track.
• Tiger skin mosquito cape [that one's actually pretty good].
• 'So many spectators they were congested like flour in a coconut shell.'
• Foxhole radios in broom heads and water bottles.
• U can smoke in Beijing bathroom / surgical mask = Japanese male/hippie gutterpunk intellectual fashion statement.
• Do I want meaningful encounters with ppl or to use them for meaningful encounter time?
• Love is when you take someone more seriously than you take everybody else.
• Sunset as punishment: child shushed and instructed to stare at it.
• Subway hipstergrass band: "rather drink muddy water than sleep in a hollow log."
• Recycling Scavenger emptying extra soda out of bottle / grandma opening greeting card in supermarket to discover it plays Who Let the Dogs Out.
• Cotton Rosser / don't have too much fun without us.
• Does any love explain a love of Sacramento?
• Birds like spilled black pepper
• Floor fish, Asian mom, WTO wary hippies
• Table of old bowling alley, espresso in the Shell
• Awe or ah

There! Now you have a perfect vision of what my last few months have been like, and I can finally delete all the messages in my drafts folder. Have I mentioned that my phone is "broken?" Have I mentioned that it's not really broken at all, just now an amazing torch?

Coldfront kindly asked me to write about a song, so I wrote about Charles Bradley's amazing song "Why Is it So Hard" right after the Ravens lost. If you click on one thing in this post, you should click on that link, just to make sure you watch that song.

Shout outs to Troy Weaver and Dan D'Angelo for enthusiastic and perceptive new reviews of Look! Look! Feathers in Gently Read Literature and Phoebe respectfully. Thankee thankee to those bros and pubs, or pros and bubs. Dan's review intelligently considers the role of snow that everybody else forgot about, and Troy makes an impressive list of smacks: "life and energy and degradation and redemption and death and internet and posture and eggs and bacon and tiny babies and medicine cabinets and drugs and alcohol and America." And I think that list is right, because Mark just told me this alcoholic sweet tea and lemonade thing I am drinking is called a John Daly.

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Another Perspective

Thursday 17 May 2012

I originally posted this in 2006 (wow, 6 years ago!) but it was when I first started blogging and didn't really have any readers. I'm republishing it now because of a post over at A Perfect Lily - Don't Do It. Patti had a visitor to her blog who arrived by searching for "positive outcomes of aborting a child with Down syndrome."

I don't see how there can be a 'positive' outcome in that situation. First there is a life, then there isn't.

But I've never been in that situation. I've never aborted a child because of Down syndrome. So I can't speak on that experience either positively or negatively. Yet I do have the words from someone who has that experience. I found this post on a well-known community forum that has numerous message boards relating to the topic of pregnancy and parenting. One such board is the 'termination for medical reasons' board.

I came across this heartfelt post from a woman who terminated due to being prenatally diagnosed with Down syndrome. It's pretty eye-opening to read from someone who has been there ... and deeply regrets her decision. She realizes all those myths and things she feared were simply not true.

This is the post I copied six years ago...

"I have lurked here for years, and although my story may not be welcomed with open arms, I feel compelled to share it none-the-less. Like many of you, I received a pre-natal diagnosis that our precious baby had Down syndrome and a heart defect. It was completely unexpected and devastating, obviously. Like many of you, my first concern was for my daughter. What would having a sibling with special needs mean for her future? I didn’t want to burden her with a brother who would never be anything but a drain on our family. We didn’t have the resources of money, time, family support, etc. to be good parents to my daughter and a child with Down syndrome. I didn’t want to bring a child into the world only to suffer. These feelings were substantiated by the medical professionals involved in my care. They universally agreed that terminating was the right decision. So we made the choice, and I had the procedure. My grief was overwhelming.

About one year after the termination, I was again pregnant. I thought that perhaps we could finally move past the pain of losing our baby. The pregnancy was smooth, an amnio proved that the baby was healthy and that there were no chromosomal abnormalities. Everything seemed great. But at 22 weeks I went into labor, and the drs. were only able to stop it for a few weeks. My precious son was born at 25 weeks due to incompetent cervix, and both my OB and the perinatologist agreed that it was a direct result of the termination procedure. There was no other explanation. After months in the NICU, too many complications to recount, various surgeries and painful procedures, my son finally came home. And I was reminded everyday of the fact that my baby’s health issues and delays, his numerous special needs, were a direct result of trying to prevent having a baby with special needs. The irony continues to astound me.

But what I have learned in the 5 years since he was born amazes me more. I have learned that I do have the strength to raise this child. That yes, the drs. appts. and therapies which at the beginning seemed all encompassing, fade into the past as he grows older. I have seen my daughter grow beautifully into a compassionate and loving person. The experience of having a brother with special needs has exposed her to something that I always said I would teach my children. That different isn’t bad…that what makes a person beautiful isn’t what you can see with your eyes. In the NICU, and since then at the children’s hospital, in specialists’ offices, at the early intervention center, in school…I have seen that children with Down syndrome, and other special needs are not burdens to their parents. These families have challenges, sure, but they also have joy. Their lives are more “normal” than not. I have seen the pride on parents faces (and felt it myself) when a goal that comes easily to others is finally mastered. I have heard stories and witnessed myself marriages and families strengthened and enriched. I have seen that kids with Down syndrome, one of whom is now my son’s best friend, are absolutely not suffering. My son’s friend runs and laughs and plays, tells jokes, and is reading. He loves freely and fully. He had the same heart defect as the baby I terminated…and after surgery he was out of the hospital in a week and has never had any other complications.

I am not sharing my thoughts to cause pain to any members of this board. But I have nowhere to go with the guilt and pain I feel for the decision I made. I do not just regret being put in the situation; I deeply, and painfully, regret the choice that I made. And I think that even though the majority of people who post here seem not to struggle with that feeling, I know that I can’t be alone. I wish that I would have actually talked to parents of children with Down syndrome. Because one thing I know for sure—as capable and helpful as my son’s drs. and therapists are, not one of them can really know what it is like to be his parent, and to see the love that he brings to our family. My son’s needs in fact are greater and more complicated than most of the children with Down syndrome that I have encountered, but his life still has value. I never would have imagined myself in this position…and I didn’t think that I, or my marriage, or my daughter, could come out stronger for it. But we have. And now after the time I have spent with these children and their families, I don’t at all consider them fanatics. But advocates for the kids who have brought so much love to their lives. And I can also say unequivocally that these children and adults with Down syndrome “have a life”. As far as what NICU nurses and neonatologists would advise, after practically living in the NICU for over 3 months, I have no doubt what they would, and do say…Down syndrome is nothing compared to what so many families experience. These children can and do have a great quality of life and contribute to their families and communities, and are not considered a burden even by their adult siblings after the parents are gone.

I am not posting this to cause pain to anyone on this board. But I also cannot just sit back and not express my views on this subject. I do not judge anyone here, including myself…I know that we all made the best possible choices with the information we had. But I have lived both sides of this issue. I have terminated for T21 and now am raising a child with special needs. I wish I had known then what I know now."

And I just wanted to say this unknown poster, "Thank you."

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Magnolia Plantation

Wednesday 16 May 2012

I usually post a picture of Kayla in this spot for Special Exposure Wednesday, but it doesn't appear that feature is happening today.

So instead I'll share a few pictures of Lucas for this Wednesday and give him some of the spotlight :)

Last Friday was National Public Park day and parks throughout the country offered free entrance. So Lucas and I took advantage of that to visit Magnolia Plantation and Gardens. 

I love how Lucas and the pygmy goat are peeking around the fence at the peacock.

This is now one of my favorite pictures; I love how it turned out!

 

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Ability Path

Tuesday 15 May 2012

AbilityPath is an online special needs community for parents and professionals to learn and connect. Experts from AbilityPath's team includes educators, parents, therapists, and medical professionals.


Several weeks ago I was interviewed for an article on their site about being a military mom and raising a child with special needs. I'm thankful for the opportunity to give a glimpse into both parts of those worlds. I thought the article A Special Needs Military Mom's Story came out great!

Right now they are running a contest - share your best tried and true mother-approved tip and you could win a $200 gift certificate to Spa Finder or Molly Maid.

They also have an active Facebook page where you can join in the fun every week for "Foto Friday" where you're encouraged to share a favorite photo of your loved one with special needs.



 

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Do You Want Another Baby?

Sunday 13 May 2012

The other day Lucas and I walked by a couple who were changing their baby in the back of their van.

He asked me, "Mom, do you want to have another baby?"

I hesitated before answering him. Do I? I have to admit there are times I get 'baby envy' and miss those baby days. I miss the feel of a new life growing inside of me. I miss the days of a baby discovering their world.

But then I remember the seemingly endless nights requiring multiple feedings, nursing pads, diaper bags, dirty diapers etc etc etc. Pros and cons to everything.

I answered Lucas, "Umm...I think I'm pretty good with having you and Kayla. A boy and a girl. I don't think I need to have another baby."

Then I turned the tables on him, "Do YOU want me to have another baby?"

He enthusiastically said, "YEAH!"

I was a bit surprised by that and questioned him, "You do? You want there to be a baby in the house?"

He said, "Yeah! No wait. 2! 2 more babies."

Me, "Two?! Why do you want me to have TWO more babies?"

His reasoning was simple enough, "Because I have two pillows on my bed and Kayla has two pillows on her bed. And because we don't have enough friends."

He can be so sweet, but I don't think that was reason enough to convince me to have another baby! Sorry son, guess we're just going to have to make more friends. I'm not getting any younger and I think my days of having babies are over.

Although I do think he would make an awesome big brother!

Happy Mother's Day!

 

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"(Enter)[View]"

Saturday 12 May 2012

"(Enter)[View]"

I'm through wondering.
I'm done asking you why
It's so hard to avoid
Getting yourself into trouble.
When I get ready to leave,
That's when your efforts double.
If it looks like I just may go,
You say "No!" and hope I move slow.

That's how it used to be.
That's how I used to see;
But nothing hurts more
Than what you used to do to me.
See, I know how it feels
To lick emotional scars;
But your cuts will never heal
You're in the dirt. I'm behind bars.

Murder in the first degree.
That's what they heard from me.
This little girl mad at the world
Was on a killing spree.
See, the unholy truth, baby
Is that I'm a very angry lady.
Deep seated behind this smile
Is a child that was reviled.

Mother never really developed
To look quite like me;
So she would call me ugly
and say no one would like me.
She used to fight me.
I dodged the pots and pans.
Of course the judge would indict me
For having her cleaver in my hands.

That wasn't long ago.
There's so much more to show.
Aside from a jealous mother,
My big brother stole the show.
He never helped in my school fights.
He closed his door on most nights
When my stepfather hit the lights
Like it would hinder my sight.

My brother knew about it.
Mother did too;
So he can't take all of the blame.
He was a kid, too.
All that pounding and thrusting
From a man who was lusting
After a ten year old child.
Tell me, mom. Was it worthwhile?

Was it that vile?
Was it grotesque
For you to sit there staring
While your man gave me his best?
When you fell to your knees
With your blood spreading like disease,
He rose up and yelled out "please!"
"Just end this now! Leave all at ease!"

He was such a tease;
Even when he was older.
He lost most of his strength;
But he still has those broad shoulders.
He used to mount and pin me.
Now with the rage within me,
I straddled him, tied his wrists
And gutted him like a fish.

This is real to me.
None of it fictitious.
Nothing these days is more delicious
Than what's violent and vicious.
I used to loathe this anger.
Now it's become my best friend.
I suppose I'm no longer a stranger.
Hell, my legacy may never end.

Sent a letter to my brother's family
Offering condolences and sympathy.
Since I was there when he drowned,
I thought I would find some empathy.
I've always been alone.
Never vicarious in nature;
But if he were on this phone,
Would that suddenly change the flavor?

Does it really even matter
That a woman let the blood splatter?
Does it make you sadder?
What happened to the laughter?
No time for blues, right?
You wanted news, right?
I've paid my dues, right?
Here is your muse. Write.

Written By: Devin Joseph Metz

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Special Exposure Wednesday

Wednesday 9 May 2012

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Something Of His Own

Tuesday 8 May 2012

Sometimes it feels like much of what we do as a family is centered around Kayla and special needs. Not to say that there aren't things we do that don't have anything to do with special needs, but a lot of what we do does. We go to Miracle League ballgames where Lucas sits on the sidelines, Buddy Walk, Family Connection Disability Walk and Festival, Special Needs day at the Lowcountry Children's Museum, Special Needs Night at Monkey Joes, Exceptional Family Member Program (on base) support group meetings and events, Easter party/Summer Picnic/Christmas Party with the local Down syndrome association, other annual get-togethers throughout the year with Family Connection, Rolly Pollies for the Special Olympics Young Athlete Program, respite care nights at local churches for kids w/special needs and their families, other various events or programs around town that have some connection to kids with special needs.

I'm glad that Lucas is growing up with this and being exposed to all kinds of differences and abilities and seeing that it's perfectly normal and acceptable. I think at a young age he's learning about acceptance and that it's ok to use a walker, or sign language, or wheelchair, or braces and etc.

However, there are times when I feel a little guilty being so immersed in the special needs community and feeling like Lucas doesn't have something of his own. He's only 4 so I know he's still young and there is still time for him to be involved in his own thing(s). He does go to a preschool program 2x a week, so that is all 'his.' But it's somewhere he goes on his own, not with us as a family because of something he's doing.

Just trying to find some balance in this thing called life with kids!

I finally signed us up to become members of the Y and in turn signed Lucas us for T-ball. He finally has something that is all about him. He has something that we'll go to as a family and cheer him on from the sidelines.  His first game was last weekend and I think he had a pretty good time!

 I think he's going to have fun with this!

As for me, I'm just glad that his foray into youth baseball doesn't have him sporting a Yankee uniform!

 

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Gluten-Free Goodness

Sunday 6 May 2012

May is Celiac Disease Awareness Month. What better way to kick that off then to attend a gluten-free expo! I told Kayla we were going somewhere that would have a lot of food and she wouldn't hear me tell her, not even one time, "No Kayla you can't have that, it has wheat." I told her she can try every.single.thing. that she wanted to eat there. She got very excited, said 'thank you!' and gave me a big hug and kiss.

I was right, I didn't tell her that she couldn't have something because it had wheat... but I did have to tell her to slow down and stop stuffing her face! I had to tell her not to have another sample of this or that because we were only 1/4 of the way around the room and there were still so many other tables to get samples from! I think she was so excited that she was allowed to eat whatever she wanted there.

It was a great expo as we found out about some companies I hadn't heard of before.

Against the Grain was the first vendor we sampled from. The pesto pizza was delicious. One of the best gluten-free pizzas I've ever tasted. We tried the nut-free pesto and the kids had a couple slices each. There was also garlic bread made from their baguettes. Kayla must have missed having that style bread. She probably had 6 or 7 samples! Even after we made our way around to the other side of the room she ran back a few times to that table! All of their products are free of gluten, grain, corn, soy, yeast, tree nut and peanut and no added sugar. All natural ingredients.

1-2-3 Gluten Free had so many yummy samples to try. Joe and my favorite was the Pan Bars; Kayla and Lucas really enjoyed the brownies. These products are also made in a facility free from gluten, dairy, peanuts, tree nuts, egg, and soy.

Whole Foods has their own dedicated Gluten Free Bakehouse and had several products to sample from ... this was about the time I was trying to slow Kayla down on seconds and thirds! The pies and cheddar cheese biscuits were really good. The ladies were so nice - they gave us a whole pie, packages of muffins, scones, and cheese biscuits to take home! So thankful!

No Gii was started by Elisabeth Hasselbeck. The vendor was very generous with the samples and we've got plenty of the Kids Bars (which will come in handy when traveling!)

Taste of Gluten Free had a huge selection of samples from their products. I was glad that the samples were in the little cups with lids so we could take them home to try them. Otherwise we probably wouldn't have made it through sampling all of the products they had! We also tried their pizza and it was also a big thumbs up. So tasty that we bought a bag of the pizza mix (it makes 3 10-inch pizzas) for only $5. Five dollars! For 3 gluten-free pizzas. Can't beat that price. All of their bagged mixes are only $5. We also bought the banana cake. Oh yummy goodness! Very similar to banana bread but moister.

Joe usually makes breakfast on Sunday mornings. One of the dishes he used to make was sausage and biscuits with gravy. Kayla enjoyed it too. Since she was diagnosed I don't think he's made it. We sampled a sausage gravy from For Full Flavor and promptly picked up two packages of the Cream Soup which can be used for several different recipes. They have gravies and sauces too.

Rudi's Gluten Free had a new product out to try - plain and spinach tortillas. I think these will taste great baked up in the oven for tortilla strips. Vendor was also generous to us and sent us home with a package of each!

Glutino's had out their pretzels (which Kayla already eats and loves!) and a new product (at least I think it is new, I only recently saw them at the Commissary) - bagel chips. The cinnamon and sugar flavor were really good.

We're already a fan of Udi's Gluten Free (it was the first GF bread I could make Kayla a grilled-cheese sandwich with! And Jason's Deli uses this brand for GF sandwiches, so I know it's a place Kayla can eat.) Another generous vendor who sent us home with some extra goodies!

I'm so thankful that Kayla was diagnosed with Celiac disease at a time when so much more is known about it, when so many other companies are making an effort to produce gluten-free products, and when restaurants are starting to be more accommodating by adding gluten-free items to their menus.

 

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Hanging With The Minor League

Friday 4 May 2012

The RiverDogs are a Class A Affiliate baseball team here in Charleston. One of their games last month was "Kids Night" and Kayla and Lucas had the opportunity to run out on the field with a starting player during the introductions. I thought they would have fun doing something like that so I had to put aside my feelings that this team is an affiliate for that New York baseball team. And no, I wouldn't be referring to the Mets! I wish I would have had the kids wearing their Red Sox hats!

The player Lucas ran out with was Dante Bichette, Jr. His father played for the Red Sox, so that was pretty cool! Kayla ran out with Cito Culver.

 

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