Survival Mode

Some days around here, we're just in survival mode.  We have so much fun, and it ends in a meltdown.  I know that basic housekeeping rules say to tidy up every night - I just can't get to that point.  Instead, I treasure every quiet moment I get.  I use it to take care of me, so that I can have the strength to take care of the rest of the family.

So here's what I do to survive.....

I start construction projects.  I don't always think them through.  I often get stuck.  Or bored.  Or busy.  They rarely are finished in a timely manner, but they do get finished eventually.  Here is my kitchen "before."  This is a space that once held a refrigerator.  The previous owners moved the fridge and added this counter. All it did was collect clutter.  So I put in a pantry!  It looks better now than it does in this photo, but you get the idea.  I need custom made doors & a shelf for that big open area.  There's a tambour door to hide the microwave.  Its all been painted so hopefully its not so noticeable that the doors don't match the rest of the cabinets.  I also need two small trim pieces to fit as fillers between the new & the existing.

 

Sometimes, I do domestic things - like canning.  This is apricot jelly & apricot syrup.  Six batches of it!  I'd like to be making pickles and canning a few more things but haven't gotten my stuff together yet.

This is what happens in every room, every day.  It won't always look quite like this, but its always something.  At first glance, its just a big mess.  Clothes & blankets on the floor...you're not allowed to pick it up.  Then you ask, WHY?  And I am told something brilliant.  This particular mess was Ava playing "Church Camp."  Em was ready to head off to camp, so Ava was pretending to go too.  Notice she packed only dresses & skirts - must be a fancy camp.  The family room was clean for approximately 15 minutes that night before she found it.

I like to take on big projects that I don't have time for.  If I'm busy with someone else's stuff, I forget how overwhelmed I am with my own life.  This is a bouquet of flowers for a bride's maid.  I recently arranged all the flowers.  As in ALL the flowers.  Bride, Groom, attendants, parents.....then I decided to help with the decorating the day before the wedding.  Yes, Ava had a meltdown.  But it was worth it.  For a few hours, I was a hero.  There's nothing I love more than to be appreciated and to fix things.

Every now & then, when I'm feeling really good - we have a Martha Stewart moment around here.  This is a butterfly made from pancakes & maple sausage links.  Sometimes its an over the top birthday cake.  We recently threw together a last minute birthday party when the girls made their own soft pretzels.  You really just never know what I might do!

Sensory Bin

We had a great day at therapy yesterday.  Ava spent about half her time playing in a rice and bean sensory bin.  So I made one for us!

You can't see them in this photo, but the girls added small toys to play hide and seek with.  This little bin has kept them busy all day!

Granted, we have rice everywhere.  But we also have 3 happy girls!

Don't worry, she'll be fine.

Don't worry, she'll be fine.  That's what everyone told me.  So here's what fine looks like in autism world:

Let's start with bedtime...that's part of getting up.
6:30pm - Ava should have been doing her kitchen chore, to be able to take a bath & start the bedtime routine.
7pm - the kitchen chore was started
7:30 - bath time
8 - meltdown over what to wear the next day.  She was wanting to wear a halter dress (not just against school dress code, but against the Mom & Dad school code too)
8:30 - read a story to baby sister as Ava listened in
8:45 - Ava has another meltdown, insisting I read her the same story I'd just read
9pm - Ava comes downstairs asking for playtime
9:30 - once she laid down, she fell right to sleep
Slept all night
6:30am - started trying wake her up, she moans at me
Continue the process every 5 minutes until she bounces out of bed at 7am screaming "Where is my dress??!!  I TOLD you not to wash my dress.  I don't want my dress washed."  And melts in to a screaming puddle of tears.
The dress fight continues until 7:40 when she finally agreed to let me iron her dress.  (She insisted it was wrinkled)  Just before, she must have eaten her toast...I can't remember now.  The bow never got fully pressed - how do you press a bow that's been stitched down?  I did my best!
8:08 - Ava starts brushing her hair in a frantic rush to get out the door so she can walk.
8:25 - Some how the dress & shoes are on - we're too late to walk.  We take Ava's picture & she gets into the car willingly, forgetting about walking.
8:32 - we walk into the classroom & everything is normal

Then it starts all over again....
11:25 - I peek into the classroom, but can't see Ava.
11:30 - Ava is released to go home, the teacher says she had a great time.

11:31 - We exit the school and enter the first afternoon meltdown.  Ava is whining about a lost money.  I keep telling her I don't see it, you can't take money to school because this is what happens.

11:40 - we're still in the lawn trying to coax Ava into the car.  Big sister heads back in to use the bathroom.
11:50 - I'm tired of this game & try to pick Ava up to carry her to the car.  This, of course, brings on a full meltdown.  Every parent is staring at us (there weren't many).  Ava is forced into her seat & we used the safety cover on her buckle.  She immediately starts trying to get out of her seat.  Half a block later, she's out.  I pull into another one of the school's lots.  By the time I'm out of the car, she has BOLTED!

Imagine this on a sidewalk, without the smiles.

  There is my beautiful girl, running away from me.  Down a busy street.  I ran faster than I've ever run before (I'm NOT a runner), praying all the way.  It took about 50 feet, but I caught her & took her back to the car.  I hit the child safety lock on the door & struggle to get her back into her seat.  We continue home.  No more than 2 blocks later, she's out again.  This time, she's out for blood.  She is hitting me with her fist, with all her strength, while I am driving.  I just keep going.  She's a danger to everyone at this point, but we live 4 blocks from school and I just want to be home.
12:02 - we pull into the driveway.  I go inside to get her a water bottle (she threw her's at me & screamed) and an ice pack.  I go back outside to find she's locked all the car doors.  Windows are down, so I reach in and unlock.  She is then calmly (between sobs) tell me more about the money.  I still don't get it.  I still didn't see the money she'd dropped.  But I apologize, and we head inside as if nothing had happened.

Its now 2pm.  We've had 3 more meltdowns since then, over minor issues like a sister stealing a favorite blanket, or someone looking at her.  We'll have nap time in just a few minutes, but first I needed to vent.

Don't worry about us though.  Things are fine, remember?

Meltdown Schedule Explained

Tomorrow (technically today as I'm writing at midnight) is Ava's first day of school!  She's in for 1/2 days this week, two days off, and then full time on next Wed.  I'm scared.  Nervous.  Excited!  And I can tell she is too.

I've been tracking our schedule, and with it Ava's meltdowns.  She has a lot of them.  The good news is, Daddy & I have gotten better at helping prevent them.  This doesn't mean she's spoiled and always gets her way.  She has Autism.  Sometimes she just doesn't get it.  Sometimes we do change our minds & it looks like we're giving in.  All the time, with every kid, you have to pick your battles.  We fought a BIG one today.

Ava had a meltdown that lasted an hour.  I'm not exaggerating.  Sixty +/- minutes!  Over walking the dog.  You see, we were headed for a walk in the mountains.  Both of the big girls wanted to hold the dog's leash.  So we played rock-paper-scissors to decide who would walk the dog up the hill, and who would walk her back down the hill.  Ava lost.  We're working hard with her therapist on making a plan & sticking to it.  This was one I wanted to change, but I held firm.  Poor Daddy & Omp (our special name for Grandpa) were left behind.  It was heartbreaking - pounding on the window, screaming so loud we could hear her 3 cabins away, drooling because she was so upset.  I can't imagine how exhausted she was from it.  A meltdown takes a lot of energy - both emotional & physical.

Here's our chart of the last week.  Sunday was the meltdown.  All meltdowns are in black, but you can see how short most of them are.  Last year, when we first started therapy, they could easily be 2 hours long.  And they were 30 minutes at a minimum!  THAT is improvement.  Even if our outside world doesn't see it - we do.

Its all color coded.  Purple is sleeping; Green is active play, household chores, being outside, running around;   Blue is quiet play, reading books, quiet imaginary games; Red is anything tv, computer, ipod related (not counting using the ipod for music).  And of course Black is the meltdown.

See the two days where I can't remember what happened?  They were either really good.  Or really bad.  I honestly couldn't remember.  I now fill my chart out several times a day.  We used to always see meltdowns during transitions - sometimes they occur because of a transition.  Other times we need a transition to get Ava OUT of a meltdown.

Wish us luck & say a prayer.  We're going to need it!  It will be interesting to see how our chart changes with school starting up.

More Schedules

Tonight was day 2 of "get ready to go back to school"  It was a rough one.  It was a rough day.  Its been a rough month.  But we're hanging in there.

Here's what I made for Ava to remember what to do at bed time.

Night time Routine

Its cute - its worth clicking on the link.  This is the same routine we had last year, but now its written down with pictures so she can remember.  I asked if she wanted velcro cards to remove what she'd done, but she said no.  So this is what we have.

Then I ordered a Medicine timer from Amazon.  I'll be able to record 6 sayings and add a timer - starting with "you have 5 minutes before bed."  Its supposed to go off every 5 minutes until you hit the alarm button.  We'll see if this works!

We've been using our seat belt cover quite a bit.  Its a great thing to have, but its distressing to see Ava meltdown when we're driving.  She knows how to unbuckle, so I have to be extra careful to remove anything in her reach that she can use as a tool.  Today, I didn't lock the belt tight enough around her & she wiggled out.  Luckily, I was stopped in a quiet neighborhood at a stop sign.  Unluckily, it was 102 degrees outside and we didn't want to hang out there all afternoon waiting for her to calm down.

Which brings me to this...our Calm Down Box.  I saw the idea on Pinterest (come follow me!) and Emma helped me make it right away.  Ava even got into making it, since its to be her box that's even better!  We used an old pencil box and added a straw, wedding bubbles, Halloween/birthday party PlayDough, a few crayons & a tiny note pad, a small squishy stuffed animal, a whistle, gum, life savers, BandAids, and a lip balm.  (The photo isn't ours, but its similar)

Hope these ideas help us!  The Calm Down Box didn't help today, but you have to use it BEFORE the meltdown starts.  We were too late.  Maybe next time I can catch it before it goes too far.

Oh, one last thing.  I'm going to start tracking meltdowns again.  We know they happen when there's a transition, but there may be more patterns happening that I'm not noticing.  Here's the file we use: Scheldule  I color in the boxes with a crayon/marker/colored pencil, and I keep it color coded by major activities (active play, calm play, school, sleep, electronics).  I color meltdowns in with a thick black sharpie.   She'll see her Neuro Dr in about a month, so this will be good info for the dr.

Organization 2012

We've been working on making house changes like crazy!!  I've been sewing, decluttering, organizing, creating schedules, all on top of our normal routines.  Its really going to help Ava with her Aspergers & Sensory Processing (visual overload is a BAD thing!!)


Here's what I've made for the dresser - I'll have the laminated & put on with Command adhesive. Follow the link to print your own set.   Dresser Labels  (Sorry moms of boys, these are pretty girly!)  There are labels for everything in the girls' drawers - I printed them three times so that no girl is left out!

I found some pretty blank tags on line, then I Googled our favorite toys, add the photo & text and have personalized toy bin labels.  Yes, back to laminating!!  I love laminated things!!  I've been going to the office store, but I'd love to own my own machine!!  (they're really not that expensive!)  Here's the link to our labels:  Toy bin labels  And here is the (source) for the blank labels.  Poke around on the site, there were rectangles, circles and several colors!  I'm not done yet, but I'm thinking I'll punch a hole in each & tie with a ribbon to the toy bins.

I've made schedule cards for Ava.  Again, I printed them & then had them laminated.  This time, I put velcro on the backs and attach them to a vertical velcro strip that hangs on the fridge.  Here is the link to print what we use.  Schedule cards

www.bumblebabymommy.blogspot.com

I've also made a written schedule for me & big sis Emma to be able to read, so we can set up the velcro chart.  I got the schedule here (source).  But it didn't have the text!  Bummer...so I added my own text.  Follow this link to print our schedule Summer schedule

Have fun getting your kids on track for summer.  Even if we don't follow the schedule every day, it really is helping us!

Swim time

A few weeks ago, we were able to meet our therapist in the pool!  We are working on things that will help Ava be comfortable washing her hair & getting water on her face.  Right now, she'll do those things but you MUST have a towel near by to wipe off any drops of water.  It gets a bit exhausting.



The pool has 4 large "steps" that go across for different depths.  And it looks like a watering hole on the farm.  So cute.  Basically, Ava got to play with whatever water toys she wanted for our 40 minutes.

Then, just as she was supposed to get out, she was asked to inch herself along the wall.  It was all great exercise and I'm sure she can't wait to do it again.  

Just before we had this session, I came up with the very basic idea of letting her play in the shower.  For some reason I think of baths as playtime, and showers as time to get in & get out.  Then I thought, why?  Why not turn on the shower & let her do whatever in there?  The therapist LOVED the idea.  Ava LOVED the idea.  I LOVE that she's getting better with water.

April is Autism Awareness month

What is Light it Up Blue?  http://www.lightitupblue.org/Markslist/home.do

Here is the text from their page:  

Join Autism Speaks in celebrating World Autism Awareness Day on April 2 and Light It Up Blue to help shine a light on autism. Whether it's your front porch or your local city hall, an office party or a banquet, the whole world is going blue to increase awareness about autism. 

• 
  Light It Up Blue, in its third year, is a unique global initiative to help raise awareness about the growing public health concern that is autism. Iconic landmarks around the world will Light It Up Blue to show their support. 
  
  Join us now and help shine a light on autism.

Play therapy

Ava & I now spend 4 days a week at Children's Village.  I'm so glad its here in town!  What would we do if  we had to drive to Seattle?  Yikes!

Children's Village Blog

I've joined the "Holland" group - its support for moms of Special Needs children.  I never thought I'd be one of these moms.  http://childrensvillage.memfound.org/holland  Its still a bit hard to get used to sometimes.  Ava looks so typical.  You'd never know she might have Autism.

Here are a few pictures of what goes on in Occupational Therapy.

This is a great little board on a lazy susan.  It just spins round & round.

The sensory bin was filled with scented cotton puffs.

The only bad part about OT is leaving.  Transitions are hard for Ava, but this is super fun...I don't want to leave either.  I can't blame her.  Tomorrow, we'll practice leaving - before we even get started.  Wish us luck...and PRAY!  We'll need all the help we can get.

Tomorrow's girl is the same as today's

Tomorrow my child will be the same as she is today, and the same as she was yesterday.  I don't mean that she won't grow & change.  I just mean that whatever label she is given is just a label.  She's the same wonderful Ava that I adore.  No matter what.


Right now, I'm worried more that we won't get a label.  That it will still be "not otherwise specified."  I just recently learned that phrase.


We will meet with the neurodevelopmental doctor in a few hours.  Its 1am, and I can't sleep.  Even though I should.

Sensory Processing

Years ago my mom told me about something called Sensory Processing.  I was so intrigued.  The thought of kids needing bear hugs to calm down sounded soothing to me.  I knew they had special clothes without tags, and vests that were heavy - like the apron the dentist gives to to protect you from the x-rays.  I never knew it would consume me to this point.  


Fast forward to 2007.  Our beautiful baby girl was very vocal about being over stimulated.  I thought I was just a better mom.  I'd been though this before.  I knew more about parenting.  I'd read all the books, and put them into practice with the older daughter.  Ava needed to be put down fairly often.  She was happy to lay in bed awake, then fall asleep.  When she was two, she'd put herself down for a nap.  When she was three, we knew something was off.  It just wasn't typical.  When she turned four, we finally got in to get help.

We don't have all the answers for her yet - there's still more to learn.  But so far, we do know without a doubt, she has Sensory Processing Disorder.  Online I see it called SPD.  I haven't gotten comfortable enough to call it that yet.  You see, I'm still explaining it to those friends & family around us who don't know what it is.  Think of it like the "Princess & the Pea."  The tiniest grain of sand in her shoe feels like a boulder.  That little brush against her skin is a major scratch.  That itty-bitty bump, it was a hit.  It goes the opposite way too ~ she can hit you, and barely notice she's touched you.

Along this voyage of the past year, I'm also more confidant that Sensory Processing is part of my being as well.  You'll never catch me without sunglasses ~ and if you do, we either turn around to go back & get them, I buy new ones, or I'll whine until you give me yours.  I spent 3 extra minutes this morning getting some odd seed out of my sock.  I could feel it...but I never did see it fall away.  As a child, I remember spending hours swinging in circles.  Or tipping my whole body so that my head was upside down as I swung.

Which leads us to our newest house project.  An indoor therapy swing.  During our intake meeting with the occupational therapists, Ava was introduced to a swing that had a platform, but could go round and round like a tire swing.  She swung in a circle for almost 45-minutes, with just a 15 minute break somewhere in the middle.  I knew we needed one for the house.  And secretly, I've always wanted a swing in my house.

Ava at therapy.  Now that I have the hardware, I may need a swing like this one too!  Its just a piece of double knit fabric.

 

 We ordered a tire swing kit from Ace Hardware for the parts.  It can support 350 lbs of weight.  I found some great fabric on sale - nice & sturdy, upholstery stuff to hold up to kids.  I also bought 2 large pieces of batting for the cushion.  The seat is 36 x 36 square plywood with rounded corners - just for a bit of safety.  I stapled the batting on to the board, one piece at a time.  And then finished with the upholstery fabric.

We know this will crash into the walls and the sisters! It will hold all three girls at once.  Or just one.  They can swing round in circles, go back & forth, or swing side to side.  If you sit on it, it sways just a bit and is very soothing.  I'm still learning all the fancy words and what play works with what sensory system.  But its my understanding that this is hitting both the proprioceptive and vestibular systems.  The board bounces just a bit, and of course - it swings!  This will help to organize thoughts, calm & soothe the rider.




I have just a bit more work to finish this completely.  You can see a small bit of fabric that wasn't stapled in properly.  But for now, its good enough.  And we have four very happy girls at our house...even if one of them is 36 yrs old!

Greening up the House

 Ever since Sensaria closed, I've been shopping with a new company.  Turns out I can get more than just the non-toxic Citrus Cleaner that I loved...I can supply my whole house with green products!

I love not looking like the gal in this photo.  I can breathe when I clean the house!

Part of the green movement in our house is buying in bulk & keeping a better pantry.  Down in the basement, I've decided that part of my laundry room will be a pantry.  I've found that the 2.5 or 5 gallon paint buckets at our Ace Hardware store are food-safe.  I have large ones for rice, flour, and sugar; as well as smaller ones for powdered milk and oatmeal.

I have several cardboard boxes that I'd cut apart and made into can storage holders.

I also have a shelving rack to hold things I've canned or purchased on sale.  (Just ignore all the beer...hubby likes to brew his own & thinks that shelf is HIS!  He's quite mistaken!)

Upstairs in the kitchen, smaller containers are neatly labeled.  I love that label maker!  And even though this jar of beans is on my top shelf - where I really can't see - all the dried beans & lentils are in glass canning jars.  I've done the same with my rice & the protein drink mix.