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!

my favorite curriculum choices this year

 

All About Spelling

If you’ve been homeschooling for any length of time, chances are you’ve heard of All About Spelling.

 

I decided to buy the first two volumes (pre-owned) to use with my daughter this year.  Also, to have on hand for my youngest who has special needs.  I’ve heard so many special needs mommies rave about the program that I thought it would be a good investment.

And I have NOT been disappointed when it comes to my daughter.  We used Abeka for her first two years at home and while she did okay…it wasn’t easy.  Especially with the spelling piece.  If had been keeping grades she would have flunked every spelling test.

 

This year has been SO much better!

 

I love that AAS doesn’t have weekly memorized lists and focuses instead on learning spelling rules.  Each lesson is fully scripted and organized.  Each lesson includes review…review…review…and lots of practice!  And the best news is…she’s successful!  In today’s lesson she wrote two sentences with a total of 15 words (we counted) and made ZERO mistakes!  She rolled her eyes at my excitement.  But I’m pretty sure she was feeling proud of herself too.  We’ll definitely be sticking with this curriculum next year!

 

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Math U See

My 3rd Grader was actually doing wonderful with Abeka’s math program but I decided to switch her over to Math U See this year anyway.  A friend was giving away a couple teacher’s manuals and dvds.  All I had to buy was the student workbook and manipulatives.  I couldn’t resist!  This was another program I’ve been eyeing with Trevy in mind.

 

My daughter is thriving with the program.  We both love the dvds and manipulatives.  We’re in Gamma this year and she’s getting the hang of multiplication. 

I’ve loved it SO much for her that I bought a used Primer set to use with him too!  I consider my youngest blended schooled.  He attends a wonderful public school program in the mornings.  And we do a lot of work at home evenings and weekends and snow days.  We’ve had a lot of them this winter!

 

Below is a sample of the Math lesson I did with him for today’s snow day!  I love how he added the 10 to the number line. 

We will definitely be sticking with Math U See!

 

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Homespun-School.net

I stumbled on Homespun-School in a FaceBook forum.  There was an ad sharing a free 6 week digital learning class.  Psssst…the next one starts on February 10th!

 

I was sold on the idea of a FREE computer class taught by someone other than me.

 

I wasn’t super sure what to expect.  And to be honest, in the beginning both my 7th Grader and I were quite overwhelmed.  But we stuck with it and went from overwhelmed to in love.  My son is learning SO much.  More than that…he’s LOVING what he’s learning!  It’s one subject he doesn’t complain about how much time it takes to complete.  He’s created his own website and is now learning how to create animations like the cartoon below.

He’s totally proud of himself.  I couldn’t be more happy we stumbled on HSS.  In fact, we’re enrolling in a Spring course!

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Draw Write Now

 

I love Draw Write Now because it combines art with penmanship/copywork!  Genius!  I’ve been borrowing the books from our library and perpetually renewing.  I should probably think about buying these!

 

**********

The Care & Keeping of You

A girlfriend mentioned how much her daughter was loving this book.  I thought it looked like a good choice for “Health”.  I had NO idea how addicted she was going to be!  She really doesn’t put it down except to hide it from the boys’.  We’ve had a lot of interesting conversations.  The topics range from hygiene to puberty to relationships.  Gotta hand it to American Girl on this one.  A great book for a tween-y health choice!

**********

Easy Peasy Homeschool

We’re using Easy Peasy for a number of things this year!

 

Science.  Reading.  Grammar.  Writing.  Spanish.  Thinking.

Easy Peasy is so great because it’s FREE!  But not just that…it’s quality.  Lee Giles, the developer, has spent a LOT of time & energy making these lesson plans available to moms like me for FREE.  It’s such a beautiful gift and I appreciate it to my toes.

A little sample of some poetry (above) and Spanish (below) that they’ve been working on with Easy Peasy this year.

We will definitely continue using Easy Peasy next year!

 

 

…danielle

A for creativity

 

 

“Watch! Puppet! Heh-whooooa!”

 

 

This is what he said as he stuck a hand up his shirt and pretended it was a puppet saying "hello".

 

 

There is NO limit to his creativity when it comes to getting out of ABA lessons.

 

…danielle

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

from the bottom of my purplicious heart

 

 

A huge thank you to EVERYONE who joined us for Purple Day yesterday.

 

 

I know that every cause has a color. And a day. And a ribbon.

 

 

I know it can be cheesy.

 

 

I'm sure there are those who think it's all silly and pointless.

 

 

But from a battle weary mom in the seizure saturated trenches...even if an extra penny isn't raised towards finding a cure. Even if the white house never does go purple for our loved ones who battle this monster. Even if it IS cheesy and silly.

 

 

I need that breath of fresh air.  That boost of encouragement.  And it means so very much to ME (and others). To see Trevy's face light up with joy when he sees someone in purple and in his own way understands it’s for HIM and for me to feel supported and accepted and advocated WITH instead of alone.

 

 

It's powerful.

 

 

And I thank you from the bottom of my purplicious heart.

 

 

…danielle

 

 

ps.  There is still time to join our linky party!  It’s a great way to heart connect with other seizure families!

you might be a seizure mommy if…

 

 

you lift the “no coloring your hair until you’re 37” ban when your 8 year old daughter begs for a purple streak to support her brother!

 

 

and you like it so much that you get one too!

 

 

 

 

 

Be sure to check out Heather’s epilepsy fact of the day!

 

 

…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!

prayers with Trevy (a bedtime book idea)

 

 

Praying with Trevy has always been part of our nightly routine.

 

 

Except when sick, Trevy is a sweet, sappy, cuddle bug at bedtime.  Even when dripping with exhaustion, there is something really special about snuggling up, reading a book, singing a song and praying.  No matter how cranky I am, it always gets me in the heart.  It’s one of the most peaceful moments in my day. 

 

I do naps and Daddy does night nights. 

 

 

Now that Trevy is understanding so much…

 

 

I’ve had this heart tug to make prayer time mean more for him. 

 

 

Once upon a time, I’d read a sweet post that shared a prayer over their children. Moving from head down to toes. It included words like “heart of a warrior – feet that run to Jesus”.

 

I thought I’d read it over at Sand in the Gears…one of my favorite reads which I’m shamelessly plugging. In fact, I emailed the author so convinced was I. Tony was kind enough to respond that he didn’t recall such a post but shared this link of inspiration instead.

 

 

I loved the idea on so many levels!

 

I loved consecrating each part of Trevy to Jesus.  I loved tangibly giving thanks for Trevy blessings.  I’ve grown into quite a pessimist over the years.  Forcing my heart to take notice of the blessings is needed!  I loved working on body parts with Trevy.  Helping him become more self aware.  I loved reminding him that he’s a perfectly Planned miracle child (as Toby calls him)! 

 

 

Did you know that the right side of the brain does most of the visual processing? 

 

Yep.  So it’s no wonder Trevy loves things that are visually stimulating.

 

Which is why I decided to take this idea that I loved and make it into a little prayer book.

 

 

I found some of my favorite Trevy pictures and using Pisca I cropped out the body parts I wanted to focus on.  Each page would be dedicated to a different focus. 

 

I then added the text “Dear Jesus, thank you for Trevy’s xyz”

 

I then free-style floated random words around the page.  I didn’t want too much text.  Just simple words that he and I (or he and daddy) can add to during prayers.

 

 

I then printed and laminated the pictures.  And a few hole punches and book rings later…we had our prayer book!

 

 

Trevy loves it.

 

 

He randomly talks about it throughout the day.  And will not go to bed without reading his prayer book.  The first time (and every time since) we read it together…he made it clear (in Trevy speak) that I forgot a very important body part.

 

 

His “taco”.

 

 

Swahili for bootay.

 

 

His siblings taught him to grab his boot and say, “I love my taco!”

 

 

Which he did whilst verbally adding a “thank you Jesus for my butt” page.  All twinkling eyes as he’s telling me all the reasons why his bum is so cool.  It goes poooop in the potty (sometimes) and makes boo-fahs (he’s a boy, people) and booty shakes (I’m not advocating for Magic Mike but I’ve seen the preview and I’m just saying, Trevy could rock the audition)…

 

 

Boys.

 

 

Trevy’s head to toe prayer book is one of the best things I’ve made for him!

 

 

…danielle

 

 

ps.  Praying over Trevy has been so beautiful that I decided to pray over the “big kids” too.  Oh if you could see the way their eyes shine!  Every now and then…an idea comes along that is a mommy home-run.