sharing happy

 

 

I have often felt a guilty pang sharing the happy moments.

 

 

Because of Trevor’s medical challenges I am very sensitive to those that are living some of the darkest moments of their lives right.this.very.moment.

 

 

I never want anyone to feel like I’m rubbing our “happy” in.

 

If that makes sense.

 

 

It also drives me bonkers that people see a snap-shot in time and so easily believe it represents the whole.

 

Trevor has many, many happy moments.

 

I cherish them deeply. He has taught me how to appreciate glimpses of beauty in a way that would never have been possible without him.

 

 

But our happy is always mingled with tragedy.

 

Brokenness.

 

In so many of those happy moments we see glimpses of the boy he could have been…

 

and our hearts smile-grieve.

 

And long deeply for the day when Healing washes over him…and us all.

 

 

Snapshots…

 

coupled with distorted perceptions…

 

could never share the whole story.

 

But nothing other than living IN the story can ever fully capture it.

 

 

This past year in particular…I have been overwhelmingly drawn to embracing the happy moments. Cherishing them even more. And sharing them too.

 

Maybe it’s because Trevor could have died last year. Indeed, his sister still has nightmares that he did. So scary was that night.

 

Maybe it’s because we’ve faced some other real health scares this year as well. The kind that effect Trevor but don’t belong to him.

 

 

Maybe it’s because this world is so saturated with sadness and groady and bitterness on every side that sharing our happy moments with each other isn’t only sweet…

 

 

it’s necessary!

 

…danielle

 

 

These thoughts have been swirling in my heart for a while. Sharing them today was inspired by this post. Which you should totally read!

why is choosing a notebook SO hard?

 

I started the year by having my 7th Grader do his Spanish work on loose leaf paper. He quickly drove me bonkers because he'd lose them! Or they'd get all crumpled. The whole thing was just a hot mess.

 

I’d tried different ideas and had been wracking my brain for a solution for weeks when such a simple idea finally clicked.  It was actually kinda embarrassing that it took me so long to think of it! 

 

 

 

 

Buy a notebook and have him paste in his work!  What we could salvage and/or find anyway.  As a side note…I make everything SO complicated!  I must have spent a good 20 minutes trying to decide WHICH notebook to buy!  LOL

 

 

Because by this time I was already quite annoyed with him, I decided to go ahead and get the project started by pasting in all the pages I could find.  Rather than put him in a position to further irritate me!  But I just knew that I knew he’d glue all the pages on upside down or the whole darn thing would be sealed shut.  Is it a boy thing?  Or just an almost a teenager boy thing?  He’s SUCH a slob!  He has many wonderful qualities that I need to focus on.  But the slob thing…ugh!

 

  

My original idea was to have him write right into the notebook but he thinks the pasted in look is "cool".  Can I call it art too?  Also, he's a lefty so writing on just a single sheet of paper works better for him. Plus, when he does screen shots we can print them and paste them right in.

 

…danielle

missing badges, parenting fails and forgiveness

 

 

She puts on such a brave face.

 

 

Such a sweet, sensitive heart she has.  Neither of my boys seem to posses that thing that makes you sensitive of others.  But she has it in spades.  She’s always thinking of others.  Always ready to cuddle.  To nurture.  To love.

 

 

But I knew.  I knew behind her big blue eyes and dimpled smile hid a broken heart.  But she was thinking of me and trying desperately not to make me sad.  She hates to see me sad.  And so she smiled even though I had failed her big time.  I felt the guilt and grief and sadness climb up my throat until I had to catch her and make her see how sorry I was.  Apologize on my knees.  Until she knew to her toes that I meant it deeply.  Until any possible root of bitterness could be plucked from the soil of her tender heart.  To God, I don’t want her to grow bitter with me.  With him. 

 

 

Having a child with significant special needs impacts the whole family.

 

 

And last Saturday, at her American Heritage Girls ceremony, she missed out on receiving extra badges as a direct result of her brother’s care sapping her mother’s energy.

 

 

It was not her fault.  She worked hard for those badges.  She earned them.

 

 

I should have ordered them.

 

 

But somehow…in all the chaos of these last few months…I missed the order placement period.  And she missed out.

 

 

The thing is…

 

 

she had already missed out before.  I vividly remember promising her at the middle of the year ceremony that next time I would get it right.  Next time she would have those badges that she worked towards.  I would NOT let her down.

 

 

Talk about a parenting fail.

 

 

I pulled her aside and with tears running down my cheeks begged her to forgive me.  She promised it was okay.  That she understood.  Her blond hair and blue eyes looked so innocent and sweet.  But she’s eight.  Can an eight year old heart really understand how much energy leaks out of me every time her brother has a seizure or an IEP meeting?  How half way though the day…I’m toast.  And ready to just curl up in bed with a book.  It feels like I’m always tired anymore.  Ordering badges are the last thing on my mind.  Can she understand that and be okay with me pouring myself into finding new treatment options and talking to specialists to help her brother…but forgetting to order her badges?  I cried because my heart broke for her.  I cried because sometimes my heart groans for the day of Redemption fiercely.  I cried because I’m mad at myself.  Always, I’m reminding myself that I’m a mom of more than one.  And yet that one takes so much energy to parent.  I hugged her hard because I wanted to squeeze any doubts that she’s not as important to me as he is right out of her.  I didn’t want to let her go because I’m afraid that someday she won’t want to come back.  That she’ll look at my choices and judge them as partial.  I fear that because I know my own heart so often is bent towards bitterness.  And I can’t bear the thought.

 

 

So I hugged her tighter.  Until she said, “um, mom, I can’t breath” with a little laugh.  Which made me laugh too.  Because not only does she have the gift of compassion…she also has the gift of comedy.  Her voice was dead pan hilarious.  Against every fiber of my being, I pried my arms open and let her run off with her little friends.

 

 

I worry about her tender heart often…

 

 

But I have hope too.  I believe in Providence.  I know that we are not a family by chance.  We were chosen to be together by a loving God for His glory.  And I believe that He’s using Trevy shape all of our hearts to look more like His.  Missed badges and all.

 

 

It also helps when I read thoughts of older special siblings like this one…

 

 

“growing up with a special needs sibling equips you with a unique sense of humor, a special ability to marvel at the small beauties in life, and a boatload of patience!”  -- Brittany, SpecialSiblings.com

 

 

…danielle

tracking: it’s time to get serious about this potty thing

 

 

Which is not to imply that we haven’t been serious to this point, mind you.

 

 

Because we have been.

 

 

For three bloody years we have been.

 

 

Once an hour (because a schedule seems to work best for him) for three bloody years we have been potty serious.

 

 

Every gimmick, trick, theory, Elmo potty toy/book/dvd, potty training program tried once an hour for three bloody years kinda potty serious.

 

 

And it’s not that he’s entirely unsuccessful.  Although he has yet to TELL me (consistently) when he has to use the potty. But still, we’ve had stretches when I’ve actually thought we were ready to brave the big boy undies in public!  Then suddenly…we’re back to ground zero.

 

 

And it’s been frustrating.

 

 

And exhausting.

 

 

And all consuming.

 

 

And (because the tears I’ve shed over this skill are many, it bears repeating) SO thoroughly exhausting!

 

 

But here’s the thing.  I haven’t been collecting data.  Oh I’ve mentally tallied pees and poos.  Especially the poos.  Especially the smeared over every portion of his body causing mommy to have psychological breakdowns on more than one occasion poos.  The trouble with mental data (especially with a fuzzy brain like mine) is that it isn’t reliable.   And if there is one thing that ABA is teaching me (you know, other than using LESS verbal prompting) it would be how important real, hard data collection is.

 

 

So even though Excel is my enemy.  I did it.  I created a spreadsheet.

 

 

 

I’m using some of our ABA program’s tracking system.

 

U+ is for pee pees on the potty is exceedingly ABA-ish.

 

 

But because I’m a Kinesthetic learner…I wanted some color that could help me make sense of any emerging patterns.

 

Hence my hand written color blocks at the bottom. 

 

 

 

I’m gonna collect potty data for a couple weeks and see where we’re at.  Our home-based ABA program is also getting serious with me.  Because he’s almost six now.  And he’s SO smart! 

 

 

I just know he can DO this! 

 

 

And the data will help me see where he needs a little more support.

 

 

Right?!

 

 

If nothing else…it will make Bristel very impressed that I “faced my (Excel) fears” today.  She’s all about facing her fears recently.

 

 

And because I’m all about helping other parents out…if you’d like to “steal” my spreadsheet just send me an email and I’ll whip a PDF right over!

 

 

…danielle

 

 

ps.  Oh and last thought.  Other than the Time Timer watch…if anyone knows of a watch that can be set to vibrate once an hour which is also Trevy resetting and water (or whatever else Trevy might do to it) proof…please leave a link in the comments section!

pumpkin pickin’ season

 

 

 

In My Life This Week

 

I don’t tend to share the guts of life, really.  It’s much easier to curl up inside myself when things are hard.  But then, that’s not really living honest.  And my heart’s desire is to be honest.  Always.  Even when it’s not easy.  And it hasn’t been easy lately.  In a variety of ways but mostly with Trevy.

 

First of all…I’ve mentioned recently that his energy and curiosity have been at an all time high.

 

But more than that, his behavior has been disturbing.  So angry and mean.  Unhappy about everything.  Screaming about everything. He bit my arm and his brother’s.  Opening skin even.  And it’s been heartbreakingly exhausting trying to parent him through this.  Behavior issues are by far the hardest part of our Seizure Monster story.

 

So last week having reached the point of desperation, I called the neuro’s office to check on recent lab work.  We measure his seizure medication levels every other month.  That poor sweet nurse who answered the phone.  I wound up boo-hoo-ing to her.  Maybe it was the fact that she was listening.  Maybe it was just how stinkin’ sweet she was.  Not once making me feel like a terrible parent.  Never making me feel like his behavior is linked to my lack of parental skills.  Even though I’d been mentally blaming myself.  Not her though.  She just listened while I gushed my fears that at this rate “they” were gonna want to lock him up in a cage someday.  She listened and encouraged me through it all.  She apologized that Dr. Neuro was out of the office that day.  I sighed and told her…we could make it through another night, I’m sure.  Evidently, her compassion was real because she called Dr. Neuro and told her she needed to call me!  Of course, Dr. Neuro called me while I was at the market.  Dr. Neuro happens to have a VERY thick Hindi accent.  You know you’re a special needs mom when you’re violating every HIPPA law ever created by shouting your child’s medical history in the middle of the milk and eggs!

 

It turns out that one of Trevy’s seizure meds was quite low.  She gave me the increase schedule and chatted about other things.  You know your child has profound medical issues when the specialist calls you on their cell phone and reminds you that she gave that number to you so you could cry on her shoulder when you needed.  Sigh.

 

Anyway…

 

For months Trevor’s behavior has slowly been spiraling out of control.  I have this thing about not wanting to be the crazy psycho seizure mom who blames every little thing on epilepsy.  So I was searching every other explanation.  Maybe his ears hurt?  I treated with Wally’s Ear Oil.  Maybe it’s sensory?  We tried joint compression, weighted vest, heavy jumping and more.  Maybe it’s just adjusting to the demands of K?  Maybe this…maybe that…

 

But I kid you not…the morning after we’d increased his dose he woke up a completely different boy.  Actually, he woke up the little boy I know and love!

 

Note to Self:  If Trevor’s behavior spikes WAY outside his norm it’s okay to play the crazy psycho seizure mommy card.

 

 

In Our Homeschool This Week

 

I think we’re in a nice groove.  I keep meaning to get a workbox post together.  But the time?  Who has it? 

 

Bristel is excelling in her Math and coming along with her Reading.

 

I bumped Toby up to Saxon’s Pre-Algebra based on his placement test results.  He’s so totally capable.  But not without plenty of weeping and gnashing of teeth!

 

Both of the kiddos are really enjoying Mystery of History.  We’re building our own replica of Stonehenge this week.  I’ll have to post pictures next!  If I find out where that time went, I mean. 

 

 

Places We’re Going and People We’re Seeing

 

 

Clearly, with all the Trevy drama…my creativity and energy has been running on fumes.

 

Which is why I am SO thankful for a wonderful and amazing friend who offered to take the kids to a special home school workshop on animal communication!  Seriously, Jen, that was a bigger blessing than you know!  My heart breaks every time my kids miss out on something because I’m too tired…or it conflicts with Trevy’s therapies.   You made ALL of our day by inviting them to hang out with you guys!

 

If you’re reading this and know a homeschool mommy who happens to have a little one with special needs…I promise you it will bless her deeply if you invite her other kiddos along for a special treat!

 

 

 

 

 

 

 

We also had a wonderful time with a huge group of other homeschoolers for our annual Simcock Farm Pumpkin Pickin’ field trip!  You can’t beat $5 for a hayride, corn maze, pumpkin, pumpkin ice cream and feeding the rescue animals!

 

 

Annnnd…

 

if that weren’t enough fun…

 

We have American Heritage Girls tomorrow and ICE SKATING next week!  One of the best homeschool activities in our area is the weekly ice skating at a local prep school.  They let us use their rink for an hour each week.  It’s great exercise and friend time.  For them…and me!

 

 

What’s not working for us…

 

 

I was using Apples Daily Spelling Drills for Toby and we both just really really weren’t clickin’ with it.  So this week, I set up spelling lists for him on Spelling City and that’s working SO much better!

 

Another thing that wasn’t working was the way I was doing their schedules.  I spent a TON of time and energy creating a super cute grid for Bristel.  She hated it.  I’m talking…totally not into it!  It made her feel too “baby-ish”.  Soooooo…I’m trying out a new style.

 

   

 

I just fiddled around with various tables in Open Office until I was happy.  I’m already loving how I can add very specific details to each day’s lesson plan.  The picture above is a screenshot of an incomplete schedule.  If you’d like a copy of my template just leave me your email addy in the comments and I’ll send it over. 

 

I’m Inspired By

 

This mom’s decision to stop hiding and start being photographically present in her children’s lives.  So someday they’ll have proof she really existed!  I SO heart connected with her.  Photos of me are few and far between.  And the ones I’m actually in I’ve carefully hidden as much of myself as possible behind a child or two.  The stress of the last few years has done a number on my face & figure.  But it’s time to swallow my pride (and insecurities) and make silly faces with them for a keepsake.

 

A Video to Share

 

I married an Orioles loving man who is raising little Orioles loving youngins.  Every Spring for the last twelve years he’s said, “This is the year, Babe.  I just know it!”  Every summer, I’d console my boys.

 

And then the impossible happened!

 

For all the other girls out there loving die hard O’s fans…I leave you with this…

 

 

 

…danielle

 

 

 

first day of school (and we already broke a house rule…sigh)

 

 

We successfully got Trevy up, medicated, potty-ed, fed, dressed and out the door for his first day of Kindergarten!

 

 

I don’t homeschool him because…

 

well…

 

I can’t afford a super nanny! 

 

Also, he needs and receives intensive therapies through the school.  It makes sense and is easier all around.  And even though we don’t technically homeschool him…there is a lot of learning happening for him at home too!

 

 

After we waved goodbye to Trevy I asked the big kids to meet me in the schoolroom for Orientation.

 

 

An idea I totally swiped from this post!

 

 

This was not without some “issue”.  And that’s because one of my ~ahem~ darlings already broke a house rule!  I learned (the hard way) over the years that we had to nix any electronics until all our school work was done for the day.  I’m not anti-electronics.  Actually, ever since my dad told me about a study in which doctors who played more small hand held video games are better surgeons because of the fine motor development and quick reflexes…well…I decided maybe the DS isn’t of the devil.    Except in the mornings.  When ‘tudeage breaks out over having to pause.  This morning being a fine example. 

 

 

My high hopes of a stress free beginning were dashed just like that.  Because I believe in “keepin’ it real” -  One of my personal goals as mommy/teacher this year is to not resort to raising my voice first.  That was a fail.  Sigh.  But His mercies are new every morning.  Every moment.  And that’s a very good thing.

 

 

I’m happy to say…things quickly turned around too.

 

 

Evidence of maturity (in all of us) happening?

 

 

And as cheesy as it might sound…we really had fun during our Orientation.  Chatting about goals.  Flipping through new (or new to us) books.  I had organized their workboxes (I’ll post in more detail on another day about those) a couple weeks ago and it was all ready to explore. 

 

 

About half way through our meeting, Toby says…

 

 

Wow, Mom, you’re really going extreme this year.

 

 

LOL

 

 

Welcome to Middle School, Buddy.  Welcome to Middle School. 

 

 

Today is going to be a school lite day.  I have a few more pages to add to our memory books (click me to see how we’re creating portfolios this year) and we’ll start our read aloud later.  Then the plan is for Grams to meet us here so we can all go pick up Trevy from school and have a back to school celebration lunch together!

 

 

…danielle

an imperfect mommy’s good enough memory books

 

I had grand plans for creating super adorable memory portfolios last school year.  Books that I envisioned my children sharing with their children and their children with…  Um, yeah, that was a fail.

 

 

Sigh.

 

 

Part of my issue is that I want things to be perfect.  Perfect or bust.  I’m a first born.  We’re really hung up on perfect.  The thing with perfect is…

 

 

ya know…

 

 

  It just doesn’t happen much around here!  I have too many kids.  I’m plugged into too many things.  I have too much on my plate.  I just can’t seem to do perfect.  Also, I’m being persuaded that perfect is a myth anyway.   

 

 

I have two themes for this homeschool (and mommyhood in general) year.  Use What You Have and Good Enough is Okay Too.

 

 

Hence…my good enough memory portfolios for this year!

 

 

 

I decided those 10 cent folders with the brads inside them were good enough.  You’ll notice the dark blue one is accessorized because I accidentally grabbed some without brads.  I was totally frustrated with myself and Staples (for mixing the two).  But then I decided to use what I have (and I have lots o’ brads and a hole puncher) and modify!

 

I also decided mommy decorating the front cover with a Sharpie was good enough…when I really wanted to run to Michael’s and buy all kinds of cutsie stickers and things.

 

You know you’re proud of me!  Right?  Rigggght?

 

 

I didn’t have to make my own printables but none of the pre-made ones really clicked with what I wanted. 

 

 

So I came up with my own good enough Me in the _______ Grade version.

 

 

We set up at our Huddle Table.  (which I have not regretted painting with blackboard paint btw)  I made sure to have colored pencils and a cursive formation guide.  The guide was added after both kids asked me for help.

 

 

The kiddos loooooved our first memory book project. 

 

 

I’m a sucker for sharing a funny moment.  One of the questions I asked them was what would they like to learn this school year. Which inspired the following conversation:

 

Toby:  I’d really like to learn more about Thomas Edison

 

Bristel:  snicker snicker

 

Toby (annoyed):  What?!  He only created light, you know!

 

Bristel (sarcastically):  Oh really?  He invented the sun???

 

 

 

I have their Memory Books filed in my mommy bin beside my desk.  Where all my homeschool and Trevy school things live.  I intend to fill them through the year with art projects, special papers they work on and other cool memory-ish stuff.

 

 

Click here to download and print the created by mwah good enough Me in the _______ Grade memory worksheets via 4shared.  Or you can email me and ask for the PDF that way.  Unless I can figure out how to upload it to my Raising Little Rhodies fan page.  Then you’ll have to like me for it!  Of course, I do share gobs of free iPad apps as I find them…so you might wanna like me anyway?   

 

 

Happy Mommy-ing!

 

 

…danielle

 

 

linking to…

simple no frills reward chart (and it’s printable too!)

 

 

 

 

 

Amy over at Are We There Yet? totally inspired me with all her back to school boot camp business.  I think it’s just the best idea ever…because I have a mad mommy blogger crush on her.   

 

 

Also, because I need a little boot camp in my life.  Oh Lordy, do I!

 

 

So I finally sat down and hashed out a reward chart I’ve wanted to create for aaaaages. 

 

 

 

 

As you can see, it’s nothing fancy.

 

 

My goal is to help motivate them with their school work, house help and character too!  All while keeping it easy peasy for me.

 

 

Each colored section represents a different “prize” they can work towards.  Our prizes include a Mystery Prize, play date, free day, candy bar, movie and who doesn’t love a little cash?!   Because I need things to be simple simple simple…there are only a few rules and ways to earn a square.

 

 

The rules…

 

• Only Mom or Dad do the coloring in of the squares
• BUT they get to choose which square to color. 
• The squares are colored in during our morning meeting time.  They are NOT allowed to ask at different times!  My kids are very very clever.  They’ve learned the art of asking mommy when I’m zonked or distracted.  Which means I’m more likely to say yes to almost anything.  Hence, setting the boundary of morning meeting only.  However, I myself am not bound to that rule and may surprise them by giving an extra square here or there.

 

They can earn squares by…

 

• Doing all their school work neatly and without griping

• Getting caught in an act of kindness

• Completing chores without fussing

• Reading a whole book with a book report (may be verbal or written)

 

 

Now for the follow through!  That’s always the hardest part.  But as far as the actually creating the thing…check that off my list.  Whoop whoop!

 

 

Just in case it sounds like something you could use…I PDF-ed it and made it downloadable!

 

(click image to download)

 

**if you don’t have a 4shared account and would like the chart please email me tanzie213@yahoo.com and I’ll send it right over**

 

 

Happy back to school boot camping!

 

 

…danielle

a picture peek at our school space

 

 

To have a school space/room or not.

 

 

That is the question.

 

 

Am I right…or am I right?

 

 

:: wink ::

 

 

Being ever the wishy-washy-ist, I fall right smack dab in the middle of that discussion.  Which is not to say that I don’t love my school space.  Because I do.  Oh I do!  Having a space to organize and meet for together time helps me feel centered.  Peaceful.  And Lord knows…I can’t ever have enough peaceful.  Also, we already need a space for Trevy’s home based therapies…it just makes sense to have that room be multi-purpose.

 

 

That said…our learning happens everywhere!  My heart sings (because, yes, I’m a sappy head) every time I read “the world is our classroom” quote that’s floating around everywhere right now – because I believe that too!  We enjoy learning on the couch, in the kitchen, at the playground, the library, in the back yard…  It’s just that our learning world also happens (for now) to include a dedicated school room.

 

 

A peek from the hall way…

 

Our School Space is actually a bedroom just off the living room on our main floor.  Being a bedroom, it is small-ish.  Hence the pieced together photos.  I couldn’t figure out how to get one big picture.

 

 

I do dream of one day having a super large bright and cheerful with thick cozy carpet room.  A Sensory Play zone tucked in the corner for Trevy.  Swing and everything.  And a farmer’s table with white legs right in the middle of the room.

 

 

Speaking of Trevy.

 

As you walk in you’re greeted by my lovely IKEA Trofast system.  The only regret I have is not buying TWO of these!  A window would look so lovely framed by two of them!

 

I rotate Trevy learning/play toys in the drawers.  We’re (and we’re I mean ALL of the kids are) learning how to take just one drawer out at a time.

 

 

 

The stair steps are a great way to display trays which will hopefully inspire independent learning play!

 

Sometimes I’ll use those stand up picture holder thingies…and have books displayed.

 

 

Our globe has lived on the top for a while now.

 

I change things around all.the.time.  So this is worth noting. 

 

 

Cork and white boards live in the corner.

 

 

I just put Trevy’s First-Then and I Want _____ sentence strips in the pocket charts (Target dollar section).  With a handful of choices.

 

The mini table below is where Trevy does his ABA therapy and we meet for our together time.

 

 

As new postcards come in we add them to our map and postcard collage on the wall.

 

 

Our All About Reading corner.  I was inspired the last time we worked on the letter E for the gazillionth time to start circling the letter we’re learning.

 

 

Inside the armoire lives a TV, dvd player and gobs of board games.

 

Confession.  I can’t stand that armoire.  It’s SO big and eats up half the room.  But it took 4 guys several hours to get it into the room – the only way it’s coming out is in pieces.  And I’m not ready to chop it up yet either.

 

 

Pretend play.

 

 

Mystery of History timeline.  After much hem-hawing, I finally decided to use sentence strips (because my motto for this year is – USE WHAT YOU HAVE) and just do a wall timeline.

 

 

That door leads to the closet.  Where most of my school supplies live.

 

I need to pretty up the little shelves up there.  But it is what it is.  The pink file tote is Bristel’s workbox.  The blue Toby’s.  One of the baskets on the bottom is just for library books.  ALL library books must be returned to that basket.  It’s a RULE.  Because it drives me bonkers when I can’t find a book and get a fine!  The other white basket is my To Be Graded basket.  Right now it’s filled with things I need to file away.

 

 

And then we’re back around the the computer desk which is piled high with stuff to organize and weed through.  Our volcano which is too purty to explode.  And a dinosaur computer which has a hard time connecting to the internet but is great for computer games and typing projects.

 

 

And that’s a peek at our School Space.

 

 

I’m sure by the end of the year it’ll look totally different.  Surely I’m not the only mom who is ever switching things up, though?

 

 

…danielle