Have bit off more than I can chew

My angel friend Kat asked me today if June was getting into things these days and I showed her a picture that pretty much sums it up:

I know you have one of these tupperware drawers.

This is good and bad as one with a child would understand.  On one hand you are rejoicing because your child is becoming more mobile and more independent, and on the other hand you are complaining that you have to follow your child around and lock doors and drawers you've never locked before, move plants, antiques and picture frames high, out of reach, buy childproofing devices you swore you'd never purchase because there would be no need for them, because, after all, you are a fair and firm disciplinarian. 

Needless to say I am not raising a typical child.  One jaunt to the beach and you'd understand that this little girl thoroughly enjoys chewing on sand and other leafy objects.  She is stimulated in a way only my therapists understand.  She doesn't make that icky face that a normal child makes after she's had a few mouthfuls, she makes that obsessed crazy face that says, "Give me more and I'll take any punishment".  Same with leaves, dirt, anything gross or gritty, really.  But her favorite is books.  She can destroy a book by eating it in about 5 seconds.  We only have one perfect board book left.

Iva June starts school on January 3.  I can't believe it, but I am actually putting my little baby who doesn't even walk yet on a bus, sending her off to school and hoping that she'll come back a little more knowledgeable, a little more social and a lot less obsessive.  I can't lie.  I'm entrusting her to the Norfolk Public Special Needs System, because I know they'll do a better job than me AND so I can have a breather for three hours a day.  Things are getting more and more difficult.  She is getting heavier and bath times alone are like catching a squirming, drowning 30 pound slimy fish who sometimes bites.  Meal times, if done correctly and therapeutically take an hour each.  She's supposed to wear glasses at least an hour a day, but since she eats those, I have to follow her around for an hour.  She needs to wear a hat (that she also eats) because she is boring a hole into the back of her head because of all the upside-down spinning she does.  She still poops four times a day and, throws up, on occasion.  There are at least 105 other therapies or "good ideas" that I'm supposed to be doing daily, but unless I hire a maid and a cook, that won't happen...and since we are also in our first, full-blown financial crisis as a family, I am officially wondering just what God is thinking.

So He told me and I'm banking on it:
"My God will supply all my needs according to His glorious riches in Christ Jesus." Phil. 4:19

Seeds and Guts

Favorite spot for both

It's 5:00 am and I can't sleep.  Maybe it's the snoring of the breathing child next to me, held tightly in my husband's arms, or the constant ongoing, swirling of thoughts all clashing in my brain, or maybe the allergies because I can't take all-powerful allegra and flonase right now, although I sneak it every once in a while.  I've been wondering...how are we going to fit another human being in this bed at night, in this house?  Will June ever be able to make it through the night without being awakened by her apnea?  These are questions only God knows the answer to, so I will wait and continue to take one day at a time while my belly makes plans and gets larger by the hour.

 

Designing

Today was a fun family Saturday.  The kind where we were supposed to do something akin to drudgery, but it turns out that the event got postponed, so we were able to, for once this week, be all under the same roof and be all harvesty about it.  After a leisurely breakfast of scones (thanks to my friend Bernadette) and eggs, and then a little cleaning and tidying, the boys set off to design their jack-o-lanterns.  You would have thought we were going to Busch Gardens by the shriek that came out of James.  

Ben gets ideas from the book, Play With Your Food

Guts were removed. Slime was explored.  We even found a pumpkin seed trying to spring new life inside the pumpkin already.  How very ironic.  Seeds were removed from pulp and pulp was removed from seeds, and then, attempted seed toasting occurred.  All in all, everyone was happy with their product.

And now it was off to the church Harvest Festival where James refused to wear his dragon costume, so he had to be a non-scary skeleton (thanks to Marmelade) instead.  Can you wear a skeleton costume in church? I wasn't so sure. I don't have a picture of it. 

The defeated dragon wishing he were out of his costume.

June ready for "vall vestible" as James has been calling it.

Straw slurping and busy hands

Today was a breakthrough.  June is 27 months and we have been working on transitioning from bottle to cup for at least a year.  In the process, there have been many tears, shaking of the head, spilled milk, frustration and GAS.  Yes, gas.  June writhes, wriggles, squirms and contorts her body in strange positions until all gas is relieved after every drink.  No amount of prevacid helps.  I will say Dr Brown's bottles have miraculously improved her condition, but since we moved on to a soft spout sippy, she seems to be in even more turmoil.  This morning we tried to feed her milk in 4 different cups to try to alleviate gas...with no luck.  I was practically crying with her this morning and at the same time, calling out to God that we need help!

This afternoon I pulled out the straw cup just one more time to give it a try.  To my disbelief, she actually pulled milk out of the straw, looked up at me and smiled (with all milk falling out of her mouth), but she did it! And she was so proud of herself.  We clapped every time she took a drag and she giggled like she was putting on a show.

Happy girl

(ignore the trucks)

 The second blessing we received was in the form of a box.  A textured carousel busy box to be precise (more info).  At a neurological visit one day, I thumbed through an Enabling Devices magazine and came across this toy and just knew June would LOVE it.  I knew it was too expensive to take a chance on, so I mentioned it to Early Intervention and they agreed to buy it for us!  It came today with June's therapist and she has been overjoyed to say the least.  James was equally thrilled.  Take a peak and ignore the whining:

You can't see it very well, but it is a six sided textured box, and each easy-to-press panel produces a different sound or motion including, music, lights, vibrating, bubble popping and horn blowing (my obvious least favorite). I know you want one now.  Kids and adults of all ages are attracted to it!

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