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!

Pink push buggy

Just yesterday we were at playgroup and the hosts surprised all the toddlers with a little post Easter egg hunt outside. I mean, amazingly they had at least 7 Easter baskets on hand and when we needed just one more, they went in the back and pulled another one out of (God knows where).  I found this hilarious because I pictured the egg hunt at my house and I'd be emptying out containers, flower pots and fruit bowls trying to give small children Easter basket hope.  Aside from this, the bunny hop was completed in about 7.5 seconds.  Then the kids sat around sneaking jelly beans and we oohed and aahed over the neighbor's cool yard.

Miss Iva June started wiggling around at this point and thrashing backwards (as she usually does).  She clearly wanted to get on the ground like the other kids....so I let her (against my true wishes).  I watched that little girl try to put her feet up in a V-position so that she could try to "walk". She became instantly frustrated and started crying...something she's been doing more of lately.  My heart saddened as I knew she wanted to join in all the bunny fun, but physically couldn't.  As she crawled around the yard, my sweet friend Mandy kept pointing out that she was eating leaves, pods and dirt again....dirt was everywhere....on my face, down my neck, and therefore down my shirt.  June had dirt all in and around her mouth.  See, this is what happens when I let her crawl around the earth.  It's a love-hate relationship, this dirt.

On the way home, we got sidetracked at another friend's house and I just happened to take June out of the stroller and let her ride in a little tikes car that was abandoned because it was "too easy" for all the other kids.  It was perfect for June. She smiled while she was riding and finally cried when it was time to go.  Her little hands gripped the steering wheel like she was a race car driver.  She sat up super-straight, as if to boast that she is a big girl now. 

As I dragged both kids home, my mind started reeling.  I HAD to get her that little tikes car.  So, after I put the kids to bed for a nap, I was on the internet, feverishly searching for a good deal on a push around buggy.  Found one on Amazon. It wasn't going to get here fast enough. I needed one for like, when she woke up from her nap.  Found one on Craig's List. Pink. Perfect.  Drove to the house after dinner and now I have one happy little girl who can actually do something when she's outside. 
So, this is what we did all day:

Walk or Ride?

So it's stroller time around here in good ol' Hampton Roads, and I'm supposed to be happy and excited to tote my kids around in their double jogger, or the  "umbrella" stroller or what my parents call the "cadillac" of strollers.  Usually I am thrilled to get some stroller time in, but lately it has been more of a guilt-fest than anything else for me.

You see, for most toddlers, stroller time is fun... a time to rest from running around, a time to look around, look up, listen to birds.  Well, lately, every time I put my almost two year old in the stroller, she looks up at me as if to say "Not this again...do you know how much sitting in restraint systems I do? Do you know how much listening I do (because I don't talk at all)? And do you know that you should really be holding my two little hands and practice walking with me? Mom, you can walk just fine."  I usually smile and she's always compliant. I put her in there anyway and my son walks or rides-whatever he chooses, but my June, she just rides and sometimes bends her body completely in half so she can giggle and eat her toes.

The zoo is about 1 mile from our house, so we go there quite often. Today was a gorgeous sunny day, so it was just calling for the zoo...and I headed there wishing I could be 100% excited, but I wasn't because I knew what this meant for little June. She'd be sitting all morning long.  So we went anyway. It really was wonderful. We rode the train. The tigers were even out.  It couldn't have been more perfect weather, or I couldn't have gone with a more perfect friend and her kiddos.  So we walked around oohing and aahing over the new exhibit and the new monkeys, the black bears....June squiggled around in her cadillac stroller, not interested in animals, completely giving up on getting out of her seat. I picked her up every once in a while to show her the animals that she was completely uninterested in. She was, however, fascinated with the cages. So, we touched lots of cages, wires and fences. 

At the very end, we were all staring, mesmerized by the tigers and she was smiling at the ceiling, her fingers dancing. I looked up and I swear they put those things up there for special needs kids. Two brilliant (fake) ginormous Japanese dragons were hanging on the awning above us. She smiled...took it all in like it was a supernatural phenomenon as they were blowing in the breeze.  After a snack, we headed home. 

Later this evening (on another walk) my husband asked me if I had done any "walking" with June today. "No", I said. "Tomorrow" is what I'm thinking.