Tidal pool

A few nights ago we managed to get it together to get down to the beach-finally.  It's summer time and we live just 30 minutes from the actual oceanfront, yet we truly under-utilize this God-given haven.  So, I packed the many bags, numerous towels, changes of clothes, sunscreens, diapers, cooler full of dinner, water jugs, buckets and shovels, balls and sand toys.  Good thing Rich's mother gave us a handy beach cart.  We would effortlessly glide across the petal soft sand to our resort spot on the shore.... But in all seriousness folks, it felt like we were the Israelites crossing the blazing hot Sinai Desert.  How does anyone do that for 40 years?  I was carrying June and had to stop every ten steps.  And those women probably had at least one child on the back, another tied across her bosom, a water jug on her head, and one of those stick things across her shoulders with two satchels of belongings balancing the whole gizmo.  I'm glad I was born in the last 300 years. 

So the whole way there, I was praying hard.  We've done this before and it has just been difficult with Iva June.  The greatest struggle is her perpetual munching of sand...and I mean, she actually likes the grittiness in her mouth.  It's pick up fistful of sand, put sand in mouth, repeat 80 times at fast-speed.  So I asked God for a miracle.  Maybe a glimpse of hope.  Maybe we won't have to carry her the entire time.  I'm fine with keeping my eyes glued on her, I just don't want to be dealing with the eating of sand issue. I want her to enjoy sand like every other neurotypical two year old...

Well, again God provided a wondrous miracle for us.  Upon arrival, the shore was lined with hundreds of tidal pools before you actually get to the ocean.  It took about 20 minutes for June to get the eating of sand out of her system (literally and figuratively), then she was off to roll, tumble, smile, laugh and wade in the pools of paradise.  It was a definite therapeutic experience and as you can see she was truly delighted!

Apple treat

God has a sense of humor. So, yesterday I sent Rich to the grocery store to pick up "fruits and vegetables" for the week.  That was mistake #1 for me.  He came back with exactly one tomato, a cucumber, string beans, corn, zuchinni, lettuce, and one very large cantaloupe. Instead of thank you, I said, "Where's all the fruit?".  He said that everything was too expensive, that bananas were 70 cents a pound, that the apples must've been from California.  Fine (I thought).  Does he realize how much our son loves apples? How much he'll be begging for them all week. It's one measly apple.  He's not asking for a ride to the moon or a trip to Busch Gardens (although he does ask for that sometimes), he just wants a stinkin' apple. 

Two hours later, after dinner, after the nightly summer walk, after the bath, the pajamas and bedtime stories, James comes creeping downstairs to give me a kiss goodnight (while I'm doing dishes, I didn't want you to think I was relaxing) and also to ask me if he could have an apple before bed.  I sort of giggle and say, "You'll have to ask your dad about that".  He ran back upstairs and I didn't hear any conversation about apples, but I was thinking, "My husband is such a tight wad.  He can't even provide apples for us. He thinks they're a novelty. Untouchable.  A treat."  Little did I know God had bigger plans to show me just how much He cares about me and my family and a little boy's desire for...apples (and a trampoline...but that's another story).

Fast forward to the next morning.  I got up early to meet my friends at the Botanical Gardens for a walk and a frolic in the fountains.  It was so incredibly hot I started melting like an ice cube.  I had perpetual dew all over my upper lip.  I can't believe my friends let me walk around like that. When I checked in the bathroom mirror, I looked like a sweaty old man who had just harvested the fields.

Anyway, my son disappeared up the hill with his friends to check out the "other side". He's an explorer of sorts, and now I'm realizing he will maybe find lost treasure in his lifetime.  And then....here he comes over the hill with treasure.  A grin on his face and an armful of apples is what he carries. They're rolling down the hill after him and he's running to my carriage dumping them in the under basket, squealing with delight over his newly found booty.  As I crept up the hill to discover the apple tree just beyond our view, I took a picture of my son and his friends hoarding and gorging on apples and of course, promptly sent it to my husband.  I sort of just smiled and was gently reminded of God's provision for our family.  He really does care about the smallest of things, doesn't he?

They have worm holes and were deemed possibly uneatable by the staff.  They're wrong. These are the best we've ever tasted. 

The perch

Lately it's been a bit comical around here with all the funny things my toddlers are doing.  You know, the usual hunting for dragons with flashlights, or using the holes in Mr Potato head for any and every extremity, or eating every extremity, or putting your hands in the potty and swishing them around a few times (I think I've mentioned this before), or just plain eating what's in the potty, or my absolute favorite...asking God daily to deliver a trampoline to our back yard.  

 Well, my daughter has been obsessed with a certain position in our house.  The funny thing is, my son was NEVER allowed to sit on this antique piece of furniture, nor would he be allowed to lounge on it and take a nap, drooling...No, he was firmly told, "No!" and redirected to another spot.  Well, one day I walked in the living room and found Iva June lying up on the coffee table, hanging out like she was sunning by the pool. I at first laughed, but then took a closer look.  She had her whole body pressed firmly against the marble tabletop (drooling and all).  I watched and waited and she did not move, so I left her there, and after thirty minutes or so she hopped on down and got back to playing (I mean, chasing strings and eating crumbs off the floor and waiting for the floor vents to blow in her face).  We have come to call this very familiar spot her perch.  What's even more spectacular is she does tricks up on the perch. She hangs her legs and arms off, does a back bend to reach toys and move wagons, all from up on the perch...  Concerned parents and therapists come by and say, "Ut-oh, she's on the coffee table. Do you want me to get her down?" "No," I always reply. "She's just hanging out on her little perch".  She gets so much joy out of it.  I don't know if she likes that she's higher up, or she likes the cold marble against her belly (she's low sensory so this is likely), or if she knows something we all don't, like you get extra energy from recharging on marble.  Either way, it's her spot, so I thought I'd take some pics:

She thinks she's hot stuff if she hangs one leg off.

I know...frightening she's resting on a laptop. My husband took this pic. Blame him.

June revealed

Just yesterday we brought Iva June for her two year old pictures with our friends Scott and Adina of Hayne Photographers.  It was quite evident during the photo shoot that we weren't going to get a "normal" toddler picture.  No sitting in pretty buckets draped with textured blankets, no standing and smiling on the tree stump, no looking into the camera lens, no looking at smiling faces, no smiling at smiling faces either.  There were just two things she really wanted to do at the studio.  Chase the fan AND (obviously) chase the cord belonging to the fan, and pull on the very funny long floor lamp, which Adina so graciously let June destroy during the photo session.  It will be a miracle if Scott can show us anything cute, but I'm sure he'll do it because he always does. 

So all that to say that my daughter is feeling more and more autistic lately.  I've been deleting all the pictures where she is flapping her hands, shaking her head violently, and crossing her eyes, but I realized just today that these things are exactly what makes my daughter unique and special, and I shouldn't just delete them.  Today we were at church and she got upset about something and started throwing her head back and forth and knocked my head so hard that it sent shivers down my neck. I'm realizing that people are now viewing her differently and I'm going to have to start getting creative...Up until this point, I've posted cute pictures and videos of June, but today, I'm going to let you see a little but of June that I really don't want you to see:

I'll post again when I get cute pictures from Scott. Until then, please pray for little miss June who is, again having a hard time sleeping, and is also starting to get very frustrated because she cannot communicate her needs/wants to us very well.  I never thought I'd thank God for a baby's cry, but aside from the few sounds she makes, that's her only way to tell us that something is wrong. Thanks for reading, for loving us....

My favorite pose these days

Happy Birthday Iva June!

Today my baby girl turns two years old.  And yes...we still call her "baby girl". My husband says he'll call her baby girl until the day he dies.  It is a bittersweet day.  Iva June has been making slow progress... but last night I saw a neurotypical two year old (again).  I see them daily, sometimes hourly.  You know what I was thinking when she was prancing around the house in her twirly little getup, having cute little conversations and giggling with all the adults. 
Things aren't getting easier. 

Today also marks the day for another glorious event.  I have finally come to the full recognition that, at 35, my metabolism has slowed down (or completely stopped).  I'm annoyed because I've been going to bed hungry for two weeks and this morning I jumped on the scale only to find that I had gained 4 pounds from just yesterday.  Marvelous.  Already took another vigorous walk and I'm definitely guzzling a gallon of water.  Maybe I'm eating too much salt. 

This afternoon, I'm sure we'll celebrate by splashing around the kiddie pool (like we always do), even though my son has a mysterious fever of 102 (still). June recently received this papillon from her Grandma for her birthday.  She uses it in the tub or the pool and absolutely loves it. I'd highly recommend it:

 
The best part of my day is yet to happen.  My mom is arriving on a train at 6:40 pm this evening.  My three year old son is the most excited.  What toddler doesn't want to pick up his Marmelade from a train station?  It will be the biggest event of the day.  Don't you just love your mom?

So, Happy Birthday to my sweet little Iva June! You have filled our lives with sunshine and joy in the most unexpected ways.  You continue to surprise us with your recent "big girl" tricks (like, last month, when I found you had climbed up on top of our kitchen table...and your recent sippy cup proficiency).  When you wrap your little arms around my ankles for a hug, I just want to melt.  When you cry, I want to hold you and tell you that you can stay little forever.  And, the smile of delight that comes from the depth of your soul, is so telling of the future you will have. Bright and cheery, ordained by God.  I love you.

Birthday princess outfit from Grandma Carolyn

Bear Days

It felt like it was 115 degrees here in Norfolk today.  I mean, the weatherman said it was only going to be 90, but I think he was wrong.  I can tell by my now crunchy hair and puffy salt lips.  I went to the zoo this morning with my model friend Lindsay.  She didn't shed one bead of sweat though-just looked completely perfect the whole time.  I, on the other hand had tiny rivers of perspiration flowing down down down my forehead ricocheting off the tip of my nose....I did NOT look fresh the whole day even though I kept applying Clinique pressed powder and lipstick.  I needed a shower by 9:00 am and we hadn't even gotten out the door yet.  We were still in speech therapy....

I did too much today.  I keep saying yes to people.  I have that problem.  I don't want to disappoint anyone and I don't want to miss out on any fun.  This has been an issue since I was a toddler, but it seems to ebb and flow with age.  I have days like today and then I start saying no to people for a few days so I can feel like a normal person again.

I'm really not here to share about my boundary issues, I'm here to tell you some good news about June!  She had her third neurofeedback session today which went perfectly.  She didn't even pull at the wires on her front right lobe or her left ear.  The other exciting thing is that it is WORKING!  Dr. Fly showed me all the areas that little June needs to work on (and she has many).  We determined that before we could move on to the more important areas, we'd have to get her sleep under control.  I didn't realize she had been so sleep deprived over the last two years of her little life.  She hasn't been able to put herself to sleep since she was an infant and over the last few months, things have gotten worse, to where it would take her sometimes two or more hours to fall asleep on her own.  She was also awakening many times in the middle of the night screaming for no reason at all.  Very unlike herself.

So for the past three therapy sessions, we've only been working on sleep, but just after her second session, she fell asleep in the car, then later that night fell asleep on her own and for the first time in months she was able to stay asleep for the entire night.  This has continued for a week and we even went on a camping trip this weekend! Hallelujah!  The only thing we have to do now is train my husband to stay away from her in the middle of the night.  He misses getting his princess and lulling her back to sleep with his deep soothing voice and gentle pats of comfort.


And because she is getting sleep, she is doing some other amazing things.  Just recently, she's been walking around like a bear (she WANTS To walk!):

Thanks for praying along with me about these neurofeedback sessions.  I'm excited to see what God has in store for my sweet little bear.

Just after the camping trip.

Neurofeedback

I am hopeful. Tomorrow I bring little Iva June to her first neurofeedback appointment.  I've researched and heard lots of good things about the journey that we are about to embark on, but I don't really know what the outcome will be.

To catch you up....June received a "brain map" a couple weeks ago, where they placed a snug little cap on her skull, stuck electrodes and goo all over head and measured her brain wave activity. Here she is.

 It was obviously a bit of a struggle to keep her from not ripping the wires off her head, but with Rich's amazing redirecting skills and a couple of strands of mardi gras beads, I am hoping they were able to obtain a reading.  The reading will show us the areas of her brain that are weak and strong, and also, the areas where they will need to place the electrodes for therapy.

Application of goo 

 

 

 

 

 

 

 

 

 

 

 

 

 

Daddy's shoulder is always best.

 

 

 

 

 

 

So, tomorrow we go to find out the results of the brain map, but more importantly to get June's first neurofeedback session. This is done by a Licensed Family Therapist.  This is not considered a medical procedure, although many neurologists work with therapists who do brain mapping. 

She'll sit in front of a screen that looks very much like a video game.  When her brain does the "right thing", the game will reward her by giving her pretty pictures to look at, color bursts, etc.  I am really stating this in the simplest of terms.  Go here for more:

www.eeginfo.com

In the the meantime, would you pray with me that we see results either quickly or not at all so we know whether or not to continue with this therapy? I am banking on change.  There have been too many things that have lined up so quickly that I know God wants us to explore this....including giving us a friend down the street who will be able to do therapy in her own home with Iva June.  I'll let you know what happens in the next few weeks!