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!

sometimes we cave

 

 

Toby made the baseball AllStar team this year.

 

 

Actually, he’s been on an AllStar team every year since he was 8.  That first year we were practically forced to let him join.  Up to that point we had not mentioned to anyone in our community that we had a child with catastrophic epilepsy.  Though Trevy was at most of the games, because his seizures are not grand mal most people never even knew he was seizing through whole games.  No one but our family.  It was heart-breaking but we were committed to trying to live as “normally” as possible.  We knew there would be times when loving Trevy would interfere with normal, but baseball was something that Toby passionately wanted.  So we did the regular season.  But there was NO way we were going to do post season play.  That was where we had to draw our special needs family line.  The coach persisted, though.  He practically begged us until we finally had to tell him why we were insisting no.  He was not to be deterred – and so he offered rides and whatever support we needed for Toby to be on the team.  Coach Bob will always be one of our favorites.

 

 

Once your child tastes the awesome-ness of wearing a jersey with his name on the back…

 

 

Well, how could we ever say no again?

 

 

Oh, sure, every year we’ll tell him this is the last year.  That’s it.  We can’t do this anymore.  It’s too much money.  It’s too much time.  Too much to ask of our family.  Trevy isn’t getting any easier to care for.

 

 

And every Spring we cave.

 

 

The thing is…we’ve never even taken him to try-outs because we really mean it.  We really believe that the last year was the last year.

 

 

And then whoever happens to be the AllStar coach of the season will find us on the sidelines and tell us when practices start.  We’ll look at each other, sigh and know that we’re caving when we say he’ll be there.

 

 

I guess in a way it’s our one thing for Toby.  The one thing we sacrifice to give him.  For Bristel, it’s letting her paint my nails crazy glitter colors even though I have an IEP meeting later in the day.  Glitter nails don’t give the “I’m serious” vibe I’m looking for.  But it’s her thing.  She loves to glitter me up.  So I give that to her.  For Trevy, it’s therapy and doctors appointments and researching meds and everything else (which is a lot) that goes into loving a special needs child.

 

 

For Toby…it’s Sports.

 

 

Part of the reason we cave is that the competition isn’t getting any less fierce.  Even though Tobin has never been to a try-out, he’s not what you would call a top tier player.  He’s solid but he’s not flashy.  And at any point, he could lose his spot on the team.  So we keep caving to yes because we’re thinking it will naturally end for him soon enough.

 

 

It hasn’t ended yet.

 

 

His first AllStar game is tonight.  He’s a mess.  He’s the kid that had canker soars when he was 2!  Anxiety is his Achilles heel and he doesn’t handle it well.

 

 

Already this morning we’ve had fighting, tears, attitude.  Like I said, he’s a mess.

 

 

He came to me, tears in eyes, saying he was just so stressed out about tonight.  How he doesn’t want to be the one to make the mistake that loses the game.  And so on.

 

 

He learned how to stay in his own ugly head from the best.  I know that turmoil all too well.  And I know what flows out of me when I let myself fester on the “what ifs”.  So in a desire to help him reject the poison and dwell on the promises…I searched out Scripture on anxiety. 

 

 

I found a WONDERFUL site with some really great tools!  They have premade index box sized memory cards.  How great is that?! 

 

 

I printed them up for him and told him every time he felt himself getting anxious he should read through them.  To try his best to push out the ugly and let the beautiful saturate his heart and mind instead.

 

 

He’ll be using them a lot today.

 

 

But guess who else will?

 

 

Hopefully, it’ll help my frame of mind for this afternoon’s IEP.

 

 

…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

our day in pictures

 

Thanks to a tip from another homeschool mom we’ve been starting our mornings each day with CNN’s Student News.  Bristel didn’t want her picture taken because she still had bedhead.

Today’s episode covered the weather in OK.  The kids and I took some time to pray together.  It’s always precious praying with them…

This (above) is my Morning Meeting Basket. Our morning meetings are a time to connect & review before the day begins. Some things I have in my basket are: mini-white boards for Scripture review or just review games in general; colored whiteboard markers; American Flag for the Pledge; Brain Quest cards for fun; Binder with odds n’ ends; Index card binder with hand written things to review; Random other review-ish things.  I like to have a theme for each day of the week…but now that summer is closing in we’re all ready to just be done.  So I’ve just been flying by the seat of my pants.

Even though summer is comin’…I finally got my hands on a copy of Sue Patrick’s book this week.  I LOVE the workbox system on so many levels and reading through the book re-energized me again.

**her e-book is half priced right now**

So I spent the weekend cleaning out my school closet and creating new workbox tags for the kids.

Including a Question Mark Flag which they can pop into play-doh whenever they have a question for me rather than just leaving their seats all.the.time.

I have promised to check-in frequently.

And so far it’s working WONDERFULLY!

Other than Toby whistling and/or loudly drumming on the table for my attention.  That’s plucking me nerves…I may have to limit the number of questions allowed per day like Sue Patrick recommends!

Bristel thought her popsicle stick was too boring so she added some bling using left-over gold pieces from a mosaic kit.  Her girly girl styles makes me smile!

Toby wasn’t thrilled that she be-dazzled his too and made us remove them all!  LOL

My new love – repositionable spray glue!  I found mine at Michael’s for around eight bucks.

I sprayed it on poster board to make a Latin vocab review game.  I’ll be using it for LOTS of review games since we can just keep sticking and unsticking!

I also used it instead of velcro to make the kids workbox cards.  I’m hoping it works out because I’m a fan of LESS bulk!

The kids have both been daily doing Xtra Math, a free math fact practice website, for the past week and I’m definitely seeing improvement.

All my online reading program memberships have expired, so I have Bristel reviewing phonics with this nifty McGuffey app.  I’m using the lite version right now but I’m really REALLY liking this app for her AND for Trevy!  I may just have to purchase the full thing…

I couldn’t resist sharing my fan set-up.  It was stinkin’ hot yesterday…and we have these really weird shaped windows that are too small for regular window fans but too big for smaller fans.  Enter Duct Tape: the everything fixer!

On a super personal note, Life has been really stressful lately. 

Trevor’s seizures have been crazy.  He’s been having drug interactions that could KILL him and HAVE caused some really scary episodes of balance and consciousness loss.  So we’ve been fiddling with meds…never fun.  I hate the med-merry-go-round.  But it’s a necessary evil when your child has a form of catastrophic epilepsy.  We almost had an admission…also never fun.  Even when it’s canceled.  We were packed and ready to head out the door when the neuro called to change plans on us…for a valid reason.  But we were already so emotionally invested that we still had to deal with a touch of “hospital hangover”.  And it’s just been chewing up our hearts.  The way life with a chronically sick child does.

This has caused me to actively search for ways to add more PEACE.

Some days that means “unschooling”.  Because I can’t gather my wits about me.

Some days it means staying in my favorite pink sweat pants from dawn til’ dusk.  Don’t you teach better in sweats?!

Some days it means spending awhile in the Word and prayer.  My Mother’s Day zero gravity chair is a great place for that! 

Today it was the Instrumental Praise station on Pandora.  The kids feel like the music is too sad.  But for me…it’s peaceful!  And I need more PEACE!  I let them change the station on breaks…Toby is a huge fan of the Newsboys station.

On the subject of Peace.  And the lack thereof.  It seems like the kids attitudes go to pot at exactly the wrong time.  I’m sure it’s partly because they feel the stress oozing from their parents.  And that’s how they deal.  But they’ve been at each other’s throats for weeks…and I’ve done more yelling and crying and well, just bad parenting moments than I care to confess.  And it’s just been not working on any level.

So another peace-chasing thing I’m trying is having a “Scripture Station” at the kitchen island every morning.

My goal is less yelling and more (penmanship, grammar &) character building.  When I feel my blood pressure elevating…I (mostly) send them to copy pre-chosen verses.

Both of my kids are really LOVING FreePianoLessons4Kids.  They think Mr. Hoffman is a great teacher and he must be because he’s keeping them engaged!

They also take lessons with Grams.  But it’s been hard to fit them in lately so I’ve been supplementing with this program.

Bristel’s Language is Abeka this year.  I’ve been letting her say some things out loud to me.  If she makes a mistake she’ll have to write it out for extra practice.  It’s been a great motivator for her to try and remember her phonics rules!  Oh and I’ve black board painted just about every school surface in our house too!  It’s SO handy.  See the bank she and I worked on before she wrote her paragraph?  I highly recommend going a little blackboard paint crazy every now and then.  It’ll make you feel so “teacher-y”.

 

 

…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!

blessed on the beach (with the crazy people)

 

 

I’m a sappy head.

 

 

Which is why I established a family tradition of praying in the New Year on the beach when we were just newly weds.  We’ve always lived (or been) close to the shore on New Years.  Delaware.  Rhode Island.  Tanzania.  And it just makes my sappy heart feel all warm and fuzzy to stand before the powerful vastness of the ocean and dedicate our lives anew to the One who created it all! 

 

 

Also, it’s fun the heckle the crazies who brave hypothermia every New Year!!!  There were three of them on our little rinky dink beach this year.

 

 

Jonathan says, “Hey, who wants to take a dip with those crazy people?!” 

 

 

The two big kids immediately shout “NO WAY!” 

 

 

Trevy (true to form) shouts, “MEEEEE!”

 

 

Now for a little back story.

 

 

It also happens that there is snow on the ground this year.  And for the first time in as long as we can remember we felt like we could actually take the kiddos sledding.  It was to be their maiden voyage!  I just knew Trevy would love it.  (I couldn’t have been more wrong)  And it’s a rite of passage as New Englanders!

 

 

So away we went.  To find Potato Hill.

 

 

Which we discovered is HUGE!  And very crowded! 

 

 

Trevy was terrified.

 

 

Toby just slightly less so.

 

 

Fearless Bristel had the time of her life! 

 

 

But wouldn’t you know it…the last trip down the hill was drama laden.  Because I’m convinced our family is cursed!!!!

 

 

Trevy and I were freezing our patooties off at the top of the hill.  His cheeks may have been frozen into a frowny face.  He was NOT a fan of sledding or watching those who were.  But I wanted to watch them go for the last time.  So there we stood, waiting for them to stop lolly gagging at the bottom and get the heck up here so we could pile in the van and go.  I had NO idea what they were doing.  Jonathan, Bristel and Toby were on all fours…rooting around in the snow.  I thought one of the kids must have had an iPod in their pocket.  I wish!  Nope.  Turns out they were looking for half a tooth.  Half of a front tooth.  Half of Tobin’s permanent front tooth!!!!!

 

 

So fast forward to our New Year’s prayer moment several hours and lots of emotional upheaval later.

 

 

We park the toasty van in view of the waves.

 

 

Jonathan and I have a lot on our hearts and minds this year.  It’s been a heavy year for us in many ways.  Not a bad year.  Just heavy. 

 

 

Jonathan asks me to open the prayer…each of the kids taking their turn (except Trevy who was still nursing a grudge that we wouldn’t let him swim!) and Jonathan would wrap it up.

 

 

So I pray.  I confess my heart wasn’t entirely in it.  I was upset about Toby’s tooth.  Upset about Trevy hating sledding.  Upset about some financial issues.  Upset about other drama.  And my heart was just not as tender as I wished.

 

 

Bristel prayed sweetly.

 

 

Trevy said, “NO!”

 

 

And then came Toby’s prayer.  Some days that boy drives me positively bonkers.  Who knew boys could be moody?!  But then some days…I have glimpses of the man he’s growing into…and it leaves me breathless.  He is a beautiful.  In the soul.  His prayer was one of those moments.  I don’t remember it verbatim but my favorite line by far was something like…

 

 

Lord, our family is tough.  We can take a few hits and still get back up.  I mean, I broke my tooth.  But I know You don’t care about the outside.  You want my heart to be what people see as beautiful.  And Trevy.  He’s been through so much and he still smiles.  And that’s beautiful too.

 

 

The rest was lost on me because by that time I was a snotty weepy tender hearted mess.

 

 

Gosh, I love my family.

 

 

Even in the cursed drama laden moments.

 

 

These are my people.

 

 

My tribe.

 

 

The joys and loves of my life.

 

 

And even with broken teeth, missing brains, plus the run of the mill life drama…

 

 

I am feeling wonderfully blessed to call them mine.

 

 

And by the Grace of God we’ll make it through another year. Hopefully, with the rest of our teeth intact!!!!

 

 

But if not…I now know a dentist who can do a bang up job of creating a fake!

 

 

…danielle

cleaning their room makes me one cranky pants mommy!

 

 

It’s the post Christmas purge.

 

 

Also, I tend to purge the house whenever we’ve been attacked by the yuckies.  And have we ever!!!!  But it seems like we’re moving towards health again.  And for some reason it always activates my nesting instinct. 

 

 

At any rate.  I’ve been busy this week trying to get the kids all situated.  We have a cozy (read: SMALL) three bedroom cape cod.  The big kids share a nice sized room on the second floor.  And because the third bedroom is on the first floor and has been converted to our school/therapy room…Trevy has a large-ish walk-in closet for a bedroom.  It’s comfy cozy. 

 

 

Because his room is so small I’ve kept his clothes in the big kids room.  It just felt easier than trying to squeeze a dresser into his already smooshy space.

 

 

But in a desire to encourage more independence from him…I moved a bookshelf in to function as a dresser.  It’s skinnier.  And I already had some cute bins to put his clothes in.  All I have to do is create cute picture labels and he’ll be good to go!  He’s already a fan anyway.  He found his sock bin and immediately got to work separating every and every pair!

 

 

You can expect a post with pictures soon. 

 

 

Seeing how cute and tidy his room is now inspired me to work on their room next.

 

 

Insert da da da da duuuuuuuuuum sound here.

 

 

I really have NO idea where I went wrong?!  Talk about a hit to my mommy self esteem!!!

 

 

Because, seriously, these two kids are SLOBS!!!!!

 

 

All this time I’ve patted myself on the back because I was teaching them to be responsible by trusting them to clean their own room…

 

 

only to find…

 

 

I kid you not.

 

 

A TOOTH ON THE FLOOR!!!!

 

 

Used bandaids in several drawers.  Gives me the eebie jeebies still!

 

 

Two missing library books.  Grrrrrr. 

 

 

A whole forest of crumpled paper!  Come on’, kids, I thought we were a go for being green!

 

 

All kinds of itty bitty broken junk.  I loath junk!

 

 

Clothing (which is safe to assume was NOT clean) shoved into positively every crevice imaginable!!!!  I’m totally this close to setting them up with five days of clothes and that’s it!

 

 

Oh my gosh was I steaming.  Lucky for them, my heart was still mulling over this Biblical parenting article I read this morning.  Both they still got an ear full.  Trevy too…because he happened to be standing nearby.  He’s actually really good at cleaning up after himself.  Also, all his toys are super structured and he has much less unsupervised freedom.  The big kids though?  They love the freedom of hiding away in their room playing legos…writing…reading…using their i-thingies.  And also ,evidently, wadding up paper in their free time and seeing just how many shirts they can fit behind their headboard!!!  Toby earned himself a full on laundry lesson.  Which is going to translate into laundry added to their list of chores.  I’m a softy (or is it super picky?) and have always done the washing and drying for everyone.  The kids fold and put away.  But today, after finding mountains of dirty clothes shoved every which where AND watching an unnamed child…wait make that TWO unnamed children…wipe their boogies on their shirts!!!  I decided, that’s it.  I’m delegating the washing to them too!  And Bristel earned a babysitting Trevy day!  Because it’s impossible to clean AND keep him safe. 

 

 

But it wasn’t all bad.

 

 

Even though I spent most of this post convincing you otherwise. 

 

 

While there were plenty of groady things found today…

 

 

I also found the funniest homemade “Spy Book”.  Evidently, Bristel fancies herself a regular Nancy Drew!

 

 

And…a beautiful two page worship song written by Toby.  SO lovely that I only wanted to throttle him half as much. 

 

 

And the best part is…their room is spic n’ span!

 

 

For today.

 

 

…danielle

my blog was nominated? my blog was nominated!!!

 

 

A homeschool/seizure mommy friend FaceBooked me yesterday that she voted for my blog over at The Homeschool Post.

 

 

I was all sappy like as I clicked the link to see what she meant.

 

 

I was a little clueless cause I didn’t know about the Best Nitty-Gritty Homeschool Blog 2012 vote going on over there.

 

 

To my surprise, sure enough, my blog was on the list!

 

 

The thing that was so surprising is seeing that someone else had nominated me!  When my girlfriend told me she’d voted…I just assumed that it was one of those things where you can add your own blog in if you’d like.  I thought how sweet she was to think of me. And she did…by voting for me.  But she’s not the one who nominated me!  There are is list of blogs that were already nominated to choose from! 

 

 

I was shocked and flattered and then totally, like, there must be a typo!

 

 

 

 

I don’t know who nominated me…but whomever you are thank you for giving me a much need CHEER UP!  Because even though I feel corny confessing it…it totally filled me up with warm fuzzies!  And I’ve been feeling pretty nitty-gritty myself lately…and needed a good dose of warm fuzzies! 

 

 

…danielle 

 

 

 

 

 

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

 

 

 

10 random things I wished I’d known about in the “homeschooling rookie” years

 

So I was inspired today.

 

 

Lucky you!

 

 

 

 

Seriously, though.  On my Raising Little Rhodies FaceBook page I shared a link to Joanne’s teacher appreciation days coming up this weekend.  I also have a sharing freebie app addiction over there too!  But a newbie homeschooler fan asked a GREAT question about Joanne’s.

 

 

“Ok probably a silly question but I'm new to homeschooling this year. What do you show to get the discount??”

 

 

I answered her question there but it inspired me to share a few random (and in no particular order) things I would have loved to know when I was still wet behind the homeschool mommy ears. 

 

 

HSLDA

Even if you’re brand spanking new to home education, chances are you’ve already heard about Home School Legal Defense Association. I know it’s tempting to use the membership money elsewhere (family zoo pass, anyone?) but I’m a HUGE advocate of becoming a member of HSLDA (or other such groups). The perks include: a wonderful magazine subscription, quick support in the event any issues arise, fast answers to the questions you will surely have…

 

 

AND

 

 

A handy dandy membership card to present for teacher’s discounts!  Like at Joanne’s this weekend!  Some stores (Staples, for example) are more particular.  Make sure you do your homework first and have your HSLDA card ready too!  You can also make your own ID card with this Homeschool Buyer’s Co-op freebie.

 

 

Homeschool Tracker

 

How many ways can I say I love Homeschool Tracker?  Not too many, that’s for sure!  I use the FREE basic edition and it works great for me.  There are cooler editions which you can purchase if you like bling.  The Basic Edition is a simple download which allows you to track your student(s) attendance, field trips, reading logs, assignments and so on.  It makes printing End of Quarter/Year reports super easy! 

 

There are other trackers out there, but for the price I think Homeschool Tracker Basic Edition is a keeper!

 

 

The Homeschool Lounge

 

Another great great great tool!  THL is an online support group with forums for everything under the sun!  SO much practical advice and just, well, support to be found in The Lounge.  If you join (and I totally recommend you do) be sure to add me as one of your Lounge Sisters!

 

 

Join (or start) a Local Support Group

 

Virtual support is great and all.  But I wanted to plug into a local support group (or two) too.  The thing is…everything seems to be based on the other side of the state!  RI is small…but there’s all that water in the way!  The other side of the state is way outta my “20 minute” zone.  I have a 20 minute max willing to travel zone.  So one day a local girlfriend and I decided to start a Mommy Needs Coffee Group once a month.  From that group (which btw…never really took off) we also launched a FaceBook Group (which did).  I’m still a member of the other FB Groups too…but I love having one for the moms on my side of the state because it makes field tripping together SO much easier!  

 

 

I’m on a couple local FB groups – it’s just nice to be in the loop even if I can’t/won’t drive that far.  I like having the choice. 

 

 

Make Friends with a Public School Mommy

or Two

 

My kids have benefited from being involved in many of our community’s programs.  Programs that I never would have known about if it weren’t for my PS mommy friends!  SO many kid/family friendly events go home as flyers in backpacks.  Your local school district might have an email list that you could request being on as well.  Friends are nice though.  You can meet PS mommies at playgrounds, town youth sports or library activities.

 

 

Speaking of the public school…you might want to think about reaching out to the principal of your local school to ask about fun things your child might be able to plug into.  My kiddos joined an after school art program one year – and it was WONDERFUL!  I have a friend whose daughter attends Music Class at her local PS.  Another friend’s girls are involved with the high school drama program.  Our town has homeschoolers on both the boys and the girls high school soccer teams too!

 

 

If you’re a first year homeschooler, it might be overwhelming enough just to organize AT HOME this year.  But don’t be afraid to explore the extras that might be available for your kiddos. 

 

 

Sue Patrick’s Workbox System

 

 

I was several years in before I learned about workboxing.  Upon which I fell immediately in love!  One of my biggest weaknesses is the actual planning/organizing.  I’m great with the doing.  But the planning just gets me every time.  I always felt lost and scatter brained.  Not that workboxing has completely cured that in me…but it has helped me gather my wits SO much!

 

 

Sunflower Schoolhouse has a Workbox Blogroll for the visual learners like me!  You can peek to your heart’s content at how other homeschool moms are workboxing.

 

I have a Workboxing Style Ideas Pin board too.

 

 

LakeShore Learning’s Teacher’s Club

 

I love love love my little laminator.  I use it for any and everything.  Well, everything except the stuff that doesn’t fit. 

 

 

Enter:  Lakeshore Learning’s Teacher’s Club!

 

 

It’s easy peasy to sign up (I did right in the store) which allows you to use their self serve laminating machine to handle the big stuff at just 29cents per foot!  Eat your heart out, Staples! 

 

 

The Well Trained Mind

 

 

Oh I’d heard about this thing called The Well Trained Mind.  And Classical Education.  I’d just never actually explored it.

 

 

Until a couple weeks ago, when I found the book listed in my library’s resources.  Our library happens to have quite a few homeschooling resources.  Which is another hint:  always check your library first.  I like to browse online and request books that way.  Our library’s system even allows me to create various lists.  I’ve been working on my Read-Aloud and a Mystery of History lists this week.  Yep, online requesting makes library trips SO much easier.

 

 

I immediately requested a copy of The Well Trained Mind and spent the next several days with my nose buried.  I just can’t say enough about how much I appreciate the practicality of this book!  I loved it so much that I bought a copy (hard backed and everything) of my very own. 

 

 

Online CAT

 

I’m such a worry wart.  A scatter brained worry wart.  And by the end of my third year homeschooling my oldest, I was totally second guessing myself.  Everything, really.  I was convinced I was failing him and I needed more than just words to comfort my heart.  I don’t even remember how I stumbled on them.  All I know is when I learned I could purchase an online CAT for just $25buckaroos…I was sold! 

 

 

Everyone has an opinion about the whole “to test or not to test” philosophy.  I’m not taking a stand on either side.  I’m just saying…that I needed those tangible, black and white, results to help my heart feel secure.  And just in case you find yourself second guessing everything one of these days too…it might be nice to know that you can easily access testing to help put your heart at ease.  

 

 

It’s OK to Ask

 

 

Homeschoolers have different schedules than other schooled kiddos.  Maybe you’d love your daughter to take horseback riding lessons but you’d rather squeeze it in during your school day.  Even better if it were with other homeschooled kiddos riding with her!  Try asking.  I did!  Yep, that’s right, I called a local stable and asked if she would consider hosting a budget friendly riding class for homeschooled kids.  She said YES!  Bristel had a blast and she looked super cute in the riding costume! 

 

 

 

Our YMCA hosts a homeschool swim class because someone asked.  Same with our local Gymnastics program.  I’m pretty sure either Michael’s or AC Moore has even developed a field trip just for us homies!  I bet it’s because someone asked!

 

My kids participate in a lot of the town youth sports but sometimes it’s nice for them to hang with other homeschoolers.

 

 

**********

 

 

Just a handful of things I’d share with you if we grabbed a coffee and chatted homeschooling.  Oh…and btw…I still consider myself a rookie!  I’ve just learned a few tricks along the way! 

 

 

…danielle

my “who homeschools” interview hosted by HammockTracks

 

 

Every Monday, HammockTracks hosts a “Who Home Schools” interview which explores various families journeys in home education. 

 

 

I’m honored and excited that I had the honor of sharing our story! 

 

 

In all the hospital hullabaloo I flaked about linking my interview in earlier this week…but I hope you’ll take a peek now:

 

 

Who Home Schools?  Danielle at Raising Little Rhodies

 

 

Thank you so much, Savannah, for this wonderful idea and opportunity!

 

 

…danielle

How to survive an overnight EEG (like a boss)

 So, confession.


We don't do anything like a boss around here. We're not that cool.


Also, I don’t typically write advice posts.  I suppose that’s because I consider myself more learner…less teacher.  Or maybe it’s just that know-it-all types drive me wonky?  At any rate, after surviving yet another inpatient EEG my hubby and I thought it’d be akin to sin not to share some things we’ve learned over the past eight years.  This is in no way an exhaustive list.  Nor do I claim to be an expert.  It’s just my list.  My credentials being that I happen to love a little guy with severe epilepsy.  We’ve been around the inpatient EEG block.

Be Prepared to Wait

Unless you’re one of those people who should totally play the lotto because things just always fall your way…you can expect to wait.  On the front and back ends of your hospital admission.  We have had the joy of visiting four rather large children’s hospitals (Boston, Detroit, Providence, Orlando) and one thing we’ve learned is that admissions are, as a general rule, a pain in the you know what.  Gotta love bureaucracy.  It never fails. No matter how many months in advance we’ve booked our overnight EEG…no matter how many reminder notices we’ve received in the mail…when we arrive at in admissions everyone seems shocked that we actually showed.  We have waited upwards of five hours for a “bed to open”. 
 
The only thing that’s worse than waiting for a bed…is waiting to escape it!  The discharge process is a form of cruel and unusual punishment!  When the attending gives you the go-home green light (usually during early morning rounds) you’re giddy with joy!  Oh the sweet smell of freedom!  You’re mentally imagining yourself eating a relaxing brunch on your own couch.  Taking a long, stress detoxing shower and getting in your jammies by noon.  But no one else seems to be in much of a hurry to let you out and it’s absolute torture, I tell you.  I’ve tried all the techniques too.  Begging, pleading, befriending nurses, firm I mean business conversations.  But at the end of the day, bureaucracy moves like molasses.  And if you’re a control freak like me, it’ll save you so much stress if you just go prepared to wait.

Hooking Up = UnHappy Camper

and Staying Hooked Up Ain’t Any Better

If you’re coming in for an overnight EEG chances are your child has already been hooked up before.  You probably know the drill.  For those who might be first timers here is a great social story that shows you (and your child) what to expect.  Keep in mind, I see everything through the filter of life with Trevy.  His first EEG was at 7 months old and he’s had at least one each year since.  I thought it would get easier.  Yeah, for us, not so much. Although he has matured to a place where he is more easily comforted with words and social stories. I find that siblings are also an awesome resource. Even still, you can expect some tears and fears. I know it's not easy for me. I can only imagine how scary and intense it feels for him!


Be sure to have your child wear clothing that doesn't need to be pulled off over their head. Otherwise, once you're hooked up...you're stuck. I love the shirtless overalls look because it makes for adorable pictures. Zippered sweatshirts and button down jammies are other faves for us.

Don’t be embarrassed if your child rips everything off and you have to call the techs to schlep back over and re-wire him. Something about being mummified and imprisoned brings out the Donnie from the Wild Thornberries in Trevor too! Oh, and two words for ya – chin strap!

As much as I gripe about our local hospital, at least they have someone to monitor him through the night so we can sleep.  We’ve been to hospitals which require a guardian to stay awake ALL NIGHT LONG.  You’ll have to flip a coin or arm wrestle to figure out who wins that honor!  Actually, I usually take the day shift (so Hubster can go to work) and we swap for night duty.  I married a good man!

Press that Button

Where the hooking happens varies from hospital to hospital. We've been hooked up in different wings and then transferred (through super fun secret hallways) to our room. We've also been hooked up right in the room. Either way, after you’re all hooked up and settled in your room it's time to get down to business.  There will be a camera, which should be on your child at all times. You may have to manually control the camera yourself. We find this easier because it allows him more freedom to move. Some hospitals have staff at the controls and require your child to stay in a designated area (think pack-n-play size) so that they are always center stage. We like to bring our own mini backpack to put the portable machine in but most hospitals have their own as well. There will be a cord with a handle. On the handle lives the magic button. You will be told to press that button any time you see “an event”.  Do not be afraid to push that button!  Any and every thing that makes you worry is a reason to push the button.  It’s so so so important to push that button!  The button helps the neuros (or epileptologists) read the EEG data by marking a few minutes before and a few minutes after you pushed it.  The easier it is to read the EEG – the sooner you get to go home!  And the sooner your heart can digest whatever information comes from the report.  Also, do you really wanna do this all again?


I didn’t think so…so…PRESS THAT BUTTON!

Been There Done That Hint:  Most of video monitoring systems also record audio. So if you’re gonna (and trust me, you will) have a blow out with your spouse I suggest doing so in whispers or code! We're always surprised at how much Swahili we still remember.

 

Bring Your Own Meds

Seriously.  If your child takes seizure meds bring them with you!  Some of the most stressful moments during inpatient stays have been over meds.  It boggles my mind how doctors can be so flippant about seizure medication orders, but we have literally given Trevor’s 7pm dose as late as 11pm.  After a crazy-mommy melt down moment…we decided to start bringing our own. It is SO much more peaceful to administer meds on time.

Make Yourself at Home

You’re gonna be there for at least 24 hours (possibly longer) so you might as well feel comfy!  Ask the nurses to show you where to find clean bedding, pillows, towels etc.  Not only will you enjoy feeling more independent, they’ll appreciate not having to run to your room every time you need a washcloth.

Our local hospital has a Ronald McDonald House room which provides coffee and snacks for parents staying in the hospital.  A coffee cart comes by in the mornings too.  Ask the staff about what your hospital might offer.

If your child is out of a crib and in a big kid bed be sure to ask for padded siding.  Not only will it make the bed more comfy cozy…it will also cover up the bed control buttons!  Out of sight – out of mind!

Pack Favorite Snacks

Hospital food isn’t always groady…but when you’re craving an oreo, you’re craving an oreo.

Distract-ify

See above – because yummy snacks are a great distraction.  But some other things that have helped us navigate the hoooooooours of being trapped in a cell hospital room:

• Child Life – many (if not all) children’s hospitals have Child Life programs which exist to help make your child’s stay more comfy by providing toys, books, coloring pages, movies, video games and sometimes even super cool things like Music or Animal Therapies!  Use them!  In fact, ask for them to visit as soon as you meet your nurse! 
• iPad/Pods/Phones (you get the idea) – load it up with new apps (I post freebie apps here and have a list of our faves here).   Some of our can’t live withouts are: Netflix, Pandora, FaceTime and YouTube.  I love our iGizmos because they’re small and easy to pack which means I don’t have to bring everything, plus the kitchen sink with me!  
• Comfy Faves – I know he’s five and I should totally be weaning the binky more aggressively…but during an inpatient EEG it’s all about making him feel safe and comfy!  I packed an arsenal of binks and blankies and his Crush stuffy too.  Whatever things comfort your little one…be sure to bring them. 
• Visitors – if you have friends/family in the area ask them to visit!  I even asked if Trevy’s home-based therapy could be done at the hospital and guess what?  They said yes!
• Virtual Visitors – FaceTime is SO wonderful!  Trevy was able to see and chat with his brother, sister and Grams on our iPod!  Bristel was amazing too…she put on a little puppet show, sang songs with him and really helped pass precious time!   

Prepare Yourself for the

Hospital Hangover

If at all possible, try to take (at least) the day following your discharge off to re-coop.  Even if nothing super dramatic happens during your stay – there is just something emotionally, physically, and spiritually draining about spending the night in a children’s hospital.  And it will hit you (probably your whole family) like a ton of bricks!  You’ll feel like you’re slogging through mud for days afterwards.  My hubby and I affectionately refer to this phenomenon as Hospital Hangover!  Be ready for it. Plan to spend a day or so decompressing in jammies and Netflix marathons.

Again, this is in no way an exhaustive list of ideas…it’s just our list.  Filtered through our life with Trevy and his epilepsy journey.  If you have an overnight EEG in the works…hopefully some of these tips will help make it more bearable for your family!

Best!

…danielle