One of Those Days

I believe I've named several blog posts with this title.  Because "one of those days" comes around only when you think "one of those days" can't get any worse than the last one.  So..today should aptly be named one of those days.

It started out fine. Kids slept in, I got the laundry folded and an actual 10 minute shower with warm water all by myself.  I thought it would be the start of a great day!

Then...I got the great idea to venture out and run some errands.  Should have just stayed home...
Our first stop set off the snowball effect of craziness that followed...

We went to the bank so I could get into our safe deposit box.  So all 3 kids and myself and the bank teller made our way back to the vault for some box digging.  I no sooner opened the lid on the box when I heard a screeeeeech....click.  And my heart skipped a beat as I saw my ornery little B-Man take off running with his little stiff-legged gait followed by a big Pee Wee Herman belly laugh.  This was after he crawled through the vault door bars, and pushed the locked door shut...trapping Leah, Autum, and I and the bank teller in the vault...while he was on the loose.  My first thought was "OH NO!"  Because Blake knows how to work the handicapped button push entry doors and can escape unseen rather quickly!  I knew the other bank teller and bank staff were busy when we walked in...I hoped someone would catch him by the shirttail before he made his escape.  After that quick scenario ran through my mind I returned to the present to deal with the issue at hand.  The bank teller began to holler at the other bank teller's to come help us out...no sooner had she began to gently ask for assistance...Leah began to panic and cry...followed up with Autum yelling at the top of her lungs..."I HAVE TO POOP! Mommy....poopy....Mommy...poopy!! Now! Waaaahhhhh!"

Oh...my....word.  It was another one of those situations where I didn't know whether to laugh or cry.  I'm laughing now as I'm replaying this episode in my mind to best articulate it for you...but at the time it was panic overload for all of us.

Luckily we escaped there rather harmlessly.  Besides the fact that I didn't find the paperwork I went in for...and as a side note...Autum made it to the 'big girl potty' in time. :)

Then...we headed to a few more places before heading home...I unloaded Blake...shooed him toward the door. Unloaded Leah and Autum and grabbed my bags, 2 gallons of milk, and my purse, to head inside. I get inside unload the groceries, put the bags away and realize only the 2 girl were inside...PANIC...where was Blake????

Leah said, "Oh, he said he wanted to stay outside."  Hmmmm, considering he is non-verbal at this point in time, I hardly believe he said that...but outside I went to search for him.  He was not in his usual spots so my heart began to pound harder...my breath got shorter...my shouting louder.  I ran to the front yard, back through the house, to the back yard...back to the front...no Blake in sight!  I yelled and yelled.  And pretty soon, I catch a glimpse of him walking beside the street back toward the house, about 3 houses down.  My mind raced from relief, to panic, to fear, to anger, to sadness, to guilt...and back again.  I would like to think this was it for today...but he escaped again, through the backyard while I was cleaning up lunch and headed down the alley before I noticed.  Seriously maybe 5 minutes was all it took...UGH!!  (we are now investing in door alarms because Leah can't remember to keep the doors shut and locked--which was never a problem while she was in school) 

Autum practicing her rope climbing skills at the CrossFit Memorial Day Hero Workout: Murph

This picture kills me because I was just finishing one of the most difficult Hero WOD's in CrossFit called Murph...we did it on Memorial Day in honor of our soldiers.  The workout is: Run 1 mile, 100 pull ups, 200 push ups, 300 squats, Run 1 mile.  This was the end of my last mile and I was almost ready to walk when Leah greets me at the street and asks, "Did you stop at Wendy's, or what??  You are running slow...almost in last place! Geez, Mom!"

When Not to Call Me...

 

This would be another good time NOT to call...while I clean up this mess.  Because nothing I do, ever stays done. :)

 

I have concluded that there are very few 'good' times to call me...and it always seems my phone rings at the worst times...never fails.  Not that I'm Miss Popularity or anything, its more like doctor's appointments, therapy check-in's, school business, and grandma and grandpa...

Let me give you an example...

Do not try to call me when:
Leah has just told the Holdenman Mennonite lady at the nursing home I used to teach at-- Parkside Homes (whom we've known since Leah was little bitty) that I "let her hit a "penis" with a metal bat for her birthday!!"...then follows it up by asking,  me "is that what its called again...a what? Mom?"  I boldly and over-correctly stated, "IT IS A PINATA, A PINATA!!!" I firmly believe she has no idea what the other word she used is...but this is the 2nd time she has called her pinata that...


Or when we are driving in the car...and I'm either driving or riding in the passenger seat, honestly it doesn't matter.  But the decimal level of screaming is off the charts. Its like a Domino effect...one starts and they all chime in.  Sometimes even I do... if I'm driving its a matter of throwing snacks to the back, or returning the shoes that have hit me in the back of the head, recovering the Bert and Ernie computer game that Blake and Autum are beating each other with, or yelling at Blake to quit spitting in the sunlight as it runs down the back of my neck...or if I'm in the passenger seat I'm busy doing the obstacle course crawl from over my seat and the console to the middle section to replace a pacifier, pick up the snack bag, Blake dumped on the floor, or to sniff out which kid pooped, or clean up the puke that Autum just let loose from getting repeated car sick.  Or to convince Leah that we just left the driveway, no WAY are we there yet...its so bad, my friends call me now and immediately ask if I'm in the car because they will call back, no problem...ha!!

Or when Jerad is watching the kids and Autum tells him she pooped.  She has gotten big enough now that she will run to her room and climb up the changing table and lay down to wait on you to change her.  Well, she has been in Pull Ups for the past week as we are working on potty training...so the other night, she told him she pooped, ran into her room and began climbing, when she climbed up the changing table, she lost half of her load on the carpet...Jerad proceeds to walk in the room and step right in it as he's preparing to change her....so its best not to call because I'm on the floor rolling in laughter and tears as I watch this mess unfold....and the reactions that ensue...

Like when we are playing in the front yard and Leah has figured out how to use Blake's Cozy Coupe truck to stand on and climb into our trees.  She stands up on the Cozy Coupe, then jumps to the lowest branch and swings before wrapping her legs around the branch.  Well, this particular day I hear screaming from the front yard while I'm putting Autum's shoes on inside and look out the window to see that Blake has decided to move his Cozy Coupe from its original position and move it to where he likes....leaving Leah abandoned like a monkey up in the tree...I seriously considered letting her hang there for awhile because I could get a lot done in the house!  But instead, I made my way out to save her...she wraps her legs around my face and head and leaves me blinded with a 55 lb. body wrapped around my throat screaming and wiggling making my job SO much easier. I'm sure the neighbors thought we had a cheerleading stunt go terribly wrong.

Or when I awake to hear Autum screaming in her room at 2:25 am.  I tromp my way, half-asleep into her room to find the light on and her sitting up in her bed, crying.  I ask her what's wrong and she says "I want up!!!" (loud enough for the whole house to hear) And I tell her its "nigh, nigh time."  To which she proceeds, "Awwwwww, maaaaaaannnn!"  And swings her arm across her chest.

So pretty much to sum it all up, there is little time in my day for me to chat...or at least to hear anything that you are saying!

Leah's last day of School!

My Little Tree Climber!

 
 



 

 

Birthday Part II

We were supposed to have an afternoon party with milkshakes, balloons, and flowers all around.  But because of the threat of tornadic-like weather and Jerad being a power lineman on-call all weekend, we had to move the party up a few hours.  So we moved the party to lunch-time and threw together some quick ham and cheese snack sandwiches, a fruit and veggie tray, and chips and dip.  And had the milkshakes as a parting treat.  I was glad to get the crushed up Butterfinger candy bars out of my house because this is the 2nd bag I had to buy before the party...Butterfingers are a weakness of mine :)

All in all, the party was fun!  We had some family generation pictures taken, as Leah cooperated impatiently...she didnt' know why everyone showed up and waited to give her the gifts until later..I believe she asked "isn't that why everyone came?" at one point in time.  So we opened gifts next, with lots of help from Blake and Autum.  We finished up with some Pinata action.  Leah loves pinata's and this one didn't fail her in the challenge.  It took quite a few hard swings to break it open, but she stuck with it and eventually busted it open.  Autum took off like a lightning bolt toward the candy when she realized what was spewing out of it!  Blake took off toward the metal bat in hopes of taking his own cuts at the dangling horse pinata.  

Then we spent some time jumping on the trampoline, playing outside, and catching up before it was time to eat the milkshakes and head home before the storms rolled in.  It was a good thing we moved it up, because the storms didn't take long to release their rage on the surrounding areas and result in Jerad's departure for the rest of the day and night. 

 

Leah's Birthday Party...Friends!

My little red-head turned 7, yesterday!
We celebrated her birthday with cupcakes for breakfast!
Then opened gifts, gave hugs and spanks, and discussed the rest of the day's plans...all before 7:30 am!
She took popsicles for her treats at school.
Then had 3 friends walk home with her after school. 
They changed into their swimsuits, jumped on the trampoline, did cheerleading, screamed and yelled and had a blast!  All while waiting on me to find my swimsuit....that Autum strategically hid sometime during that day.  And everytime I asked where she put it...she said "I don't know Mama..."

An hour later I finally found it wrapped up in the towel she had been clenching since she woke up from her nap. I had finally given in to the idea that I wouldn't swim...and as I'm loading Autum into the van her towel falls out of her lap and out rolls my swimsuit....

That girl...

So we made the most of only having an hour to swim at the pool.  But the kids wore themselves out and were asking to eat within the hour anyway.  So we made our way to Gambino's pizza for supper.  Nothing like cheesy breadsticks and pepperoni pizza to end a perfect day!

On the way home, Leah said she had the best day...and wanted to know what gifts I had planned to get her for tomorrow. 

Hillbilly Bone!

As I was looking through the pictures I took of the kids over the weekend, I realized we have officially stripped Blake of his European lifestyle and have fully flooded him with a Kansas, backwoods, country, hillbilly bone!

See for yourself...

Only good photo I've gotten of all 3!

Autum was showing me her 'spin-around' dress...and Blake photo-bombed the picture at the last minute!

...and this one too!

Nothing like a little dunk ball in overalls!

Mohawk, overalls, and an 'old dog...does it get any  more country than that? :)

Meg, the dog, and Blake are BEST buddies!

Blake LOVES my dad's harmonica and yesterday was the first day Blake figured out how to make noise with it...then he started rocking back and forth, slapping his knee and the whole bit...again, country, much?

Then he recruited little sister to join the band! My dad was grinning from ear to ear!

And not to be left out...Leah serenaded my mom and Autum with a little rendition of The Voice!

Rewiring My Brain and Hers

I have spoken some of my stress/frustration/and progress with rethinking everything I know about Leah, our almost-7-year old.  Having known for 5 years that something was just not 'right' in my mom-gut, and finally after lots and lots of pushing/testing/asking questions we sort of got an answer and some direction.

We are approaching Leah's Dx of Asperger's with a whole new set of rules.  After doing in my mind, what you'd call "all wrong" up until now....we have a lot of rewiring to do.  With myself being the one needing to make the most changes.

Here's where I'm at...

Scenario 1:  I am begging, pleading and arguing with Leah about wearing socks...because you have to wear socks...you'll get blisters if you don't wear socks...your shoes will stink terribly if you don't wear socks...threatening, disciplining her defiance and her inability to follow the rules...getting angry and ruining my whole morning...sometimes even sending her to school late after we have both been in tears...reasons for wearing socks...

What I now know...Socks...make her feet feel like they are on fire.  Literally.  One little seam out of place, one shoe tied to tight, one strap rubbing wrong can send her into a tantrum, a shut-down, knock-out, drag-down temper.  So to her, in her mind, to avoid wearing the socks means avoiding the burning feeling and avoiding an uncontrollable tantrum...

It's not a defiance.  It's a sensory issue.

Scenario 2:  It's a Tuesday in the spring, usually mid-April.  Leah comes busting in the backdoor with that wild look in her eye. I can see it before she even opens her mouth and makes it obvious...she is in a bad mood.  She throws her bag down in the middle of the kitchen floor, kicks her lunch box at me and demands something to eat.  More like yells...and follows it up with "hurry, NOW!"  I take a deep breath, ask her to go to her room until she can cool off.  I then go to her room to tell her she will lose privileges if she talks to me like that because it is not respectful and it is not how we get what we want.  I demonstrate how she could ask nicely next time and offer her the chance to come try it again.  She comes back into the kitchen and begins to ask nicely like I showed her, but ends with yelling and kicks a chair... Of course I get mad and yell at her to return to her room...no TV programs tonight...then covers her ears with her hands and tells me to stop yelling and that she hates me.  I lose it and begin yelling more...

What I now know...And found out later...they had a tornado drill at the end of the day...the siren sounded for over a minute..loudly...and it felt like a dentist drill digging into a nerve...screeching and piercing and never stopping...in her mind.  It was painful.  She could not get the sound out of her head...it was scary.  And she didn't know what to do or how to make it stop, or where to go, or why everyone was getting in line, or why the teacher stopped what she was doing so fast and changed her tone of voice...

It was too much.  Her fear and anxieties from that sound sent her over the edge and spilled over into the after-school hours.  She held it together until she got home.  Then she didn't know how to deal with it.  She couldn't express what had happened until hours later, when the sound had left her brain for the time being.  She still couldn't really tell me why she was so mad and upset when she got home.  And I've also learned a hunger issue.  Behaviors are magnified when she is tired/hungry.

It's not a defiance.  It's a sensory, anxiety, and fear issue.

Scenario 3:  We are at a basketball game.  It's a Friday night.  There are people screaming.  A band playing.  Horns buzzing.  Coaches yelling.  Players running.  The smell of popcorn butter is floating through the gym into every corner and crevice.  We are watching the game.  Chatting with people nearby.  The buzzer goes off its time to go home.  Game over.  We get into the van.  Leah is bouncing, literally, off the backseat.  She's talking really loudly, in an uncontrollable, manner.  Asking a thousand questions a minute without waiting for the answer to be replied.  She's ignoring our pleas to calm down, to breathe.  To be quiet.  This carries over to the house where she slams every door she walks through.  She flicks all the lights on.  She starts climbing up the couch, getting herself as high off the ground as she can.  Chanting and arguing with our demands to get down.  Pulls on the curtains which she knows the consequences too.  Says "No" in defiance to our asking her to get ready for bed.  To brush her teeth.  This goes on and on until we have to physically pick her up and put her in her room.  We undress her, while she continues to flail her arms and legs.  Yelling.  Then crying.  We discipline her in the moment.  Then force her to brush her teeth, get her PJ's on, turn on her CD of music, turn on her lamp, turn off her room light...and tell her we aren't reading a book tonight because she isn't being obedient.  She cries and screams, and kicks and yells.  We discipline her again.  Makes things worse...

What I now know...It is sensory overload for her.  She cannot process all of the sensory activities going on in a contained gym all at once.  And we can't expect her to turn it all off with a snap of a finger either.  There has to be a transition, a preparation phase, a calming phase, a transitioning object even...or a complete avoidance of these games for now.  She cannot handle it all...plain and simple.

She is not acting out.  She can't manage all the sensations she experienced. 

These are the types of things I'm having to readjust my thinking toward.  I have always defaulted to her being "strong willed and defiant, naughty, disobedient, ungrateful, not disciplined enough..."  So my solution was always to be more stern, more strict, more disciplined, to invoke harsher punishment.  It seemed so cut and dry.  That's what works for all other children.  It should work for mine.

Problem was...it wasn't working.  And it still isn't.  But old habits die hard.  And on top of that, I'm still differentiating between what is normal defiance and just being a naughty 7-year old and what is related to a sensory malfunction or overstimulation.  It's a constant mind-battle for me/us.  But we are learning. We are researching.  We are educating ourselves.

All because we have a beautiful red-head with all the potential in the world, to change the world.  She just needs us to understand her...so we can help her! And for that it is worth all the frustration and mess-up's we've made to get to where we are going.

The Good, the Bad, the Ugly

It seems like every once in a while I have this post to make.  The Good. The Bad. The Ugly.  I remember when those shirts came out sporting the KU, KSU, and WSU or Mizzou or OU logos splashed under any given title.  So for some reason that title sticks in my head to describe most days at our house.

In the past few weeks...
THE GOOD...
We went with Leah on her 1st grade field trip to Abilene.  We rode the carousel.  We ate lunch on the train ride. We went to the park.  We saw the chickens. We got in the van, we got out of the van...we got in, we got out.  But we had no major meltdowns, except that Leah got herself pretty worked up on the train ride  and we had to cut the field trip short.  She was amazingly better after a few miles in the van outside of Abilene. Another anxiety issue we are learning about...

 

 

THE GOOD.  

Us girls (Leah, Autum, Myself, Kate, and my Mom) all made a road trip to Kansas City to do some shopping of course, and most importantly to attend my cousin and his wife's baby shower.  We got to see my aunt and uncle and my cousins.  As well as spend more time with my grandparents.  My grandpa helped Autum eat her snacks and made sure she stayed on the picnic table.  And my aunt and Autum watched everyone open presents.  

The UGLY.
I took Autum into the bathroom with me before we left to head home from the shower.  The bathroom was really small so I had her stand beside me while I used the toilet, then we'd switch.  Well I'm sitting there a few seconds when I feel something combing through my hair...I turn around to see Autum waving the toilet brush around and combing my hair with it saying "pretty hair...pretty hair, mommy!"  AHHHHHH!! (was my reaction) :)

I took a shower the other morning and Autum jumped in with me fully clothed. As usual.  So I stripped her down and we cleaned off. Well, she got out ahead of me and proceeded to dry off.  I shut off the water and got out, only to notice she was using my towel.  I grabbed hers and began drying my hair..when I asked her why she was using my towel...she said "my towel -wet!"  I said okay...continued drying off, then I asked her why her towel was wet...and she said "because I pee-pee on it!"  AHHH!!!

That girl is killing me lately...

The BAD.
This Asperger's thing is taking a lot of getting used too.  I've dealt with it for 7 years, but now I'm realizing how I dealt with it has been totally wrong.  So of course, there is fighting off the mommy guilt.  The guilt that I know I can't let seep in and overtake me because I had no way of knowing what I was dealing with...just thought this was motherhood.  So anyway, I have the most trouble when I find myself reverting back to my old ways of getting angry and frustrated by her inability to do things I think she should be doing on her own by now...or when her anxiety gets so bad she gets physically sick (like on the train ride), or when she is overstimulated and her senses are going awry and she plugs her ears with her hands and screams and yells...I just can't seem to shut my mouth and only make things worse.  So yah, there have been some bad days.  I am reading a good book right now that is opening my eyes even more to how Leah thinks and processes her world around her.  Good stuff! I just told Jerad the other night that I am realizing that Leah doesn't learn by demonstration or observing...like most kids do/can with the basic stuff.  I have to teach her everything.  That, hands down, is the hardest thing for me to have patience doing.  Over and over again...

For some reason with Blake its easier...his special needs is pretty basic and obvious.  What you see is what you get.  I know his shortcomings, his weaknesses/strengths and how to motivate him based on that.  Its pretty cut/dry. For the most part...
Leah is a whole different ball game, you don't know what you are going to get minute to minute.  When she comes out of her room every morning I find myself looking at her eyes..trying to determine what "Leah" will be joining us today.  I feel like I'm always on the defense, trying to be ready to counteract every move she will throw at me...its wearing.

So that's the bad.

THE GOOD.
 But it isn't all bad...we are having some really good moments/improvements as well.  I feel like we are getting a hold on the rage cycles, as far as preventing them...seeing them coming...bringing her back down before we all go over the edge.  So that has been a blessing!

Updates

I have been learning so much about Blake lately.  And I love it!


The poor doctor's/therapists that are at all of our appointments probably get tired of my questions.  But one thing I've learned is to question everything. Unfortunately, as I'm getting further into this life of mothering two children with special needs, I have learned to question and fight for everything.  So as a result its my default mode now...

First, we decided to get Blake some SMO's to help his hip mobility, help him put his body weight in the balls of his feet, and not his heels, and to provide an arch support for his flat feet.  We tried hip-huggers (neon purple spandex tights that have the legs sewn together) at night and have been doing lots of crawling exercises to help stimulate hip mobility and stability.  Which have helped to some extent...but we felt the ankle braces would be the boost he needed to help his walking.  So when I can keep him out of mud puddles before we have to go anywhere, he wears them.  They add 30 minutes to our prep time before leaving now and I have to use a shoe spoon to maneuver his shoes over his heels--but he is running with bent-legs now...(he doesn't do the stiff-legged toothpick trot across the grass anymore--even though that was more entertaining to watch) He runs like a big kid! And is keeping up with Autum better...much to her disgust! 

We then went to an Ear, Nose, and Specialist to have Blake's ears checked.  He has repeatedly failed his hearing test at school. And his orphanage medical papers described significant hearing loss in his left ear.  So we wanted to make sure there wasn't anything else going on.  We found out he has fluid behind his ears, which is highly common in kiddos with DS.  Small ear canals.  So, we were talked into having his adenoids taken out right away to avoid this situation.  But after some thinking and fear on my part, I called it off.  We are headed to the Down Syndrome Clinic at Children's Mercy Hospital in Kansas City in a few weeks, so I decided to hold-off any surgeries, etc. until then.  We'll get the official decision from the experts. I want to make sure he doesn't need his tonsils out or any other procedures done first, and we'll just do them all while he's under anesthesia.  Which is risky business for kids like Blake. 

Anyway, hoping my mommy gut is right there.

Then, we went to have his eye's checked.  I had some concerns with his depth perception.  And with the use of his right eye and right side of his body.  He seems to trip more to the right side.  Or run into objects in his right depth of vision.  He also runs/walks/plays with his right arm hugged into his body and uses his left arm for movement and balancing.  So in his doctor appointment, when we covered his right eye he was able to track everything, point to objects, and had no frustrations.  As soon as we covered his left eye, he went berserk trying to uncover his eye with my hand.  He refused to point at the objects, began to cry, and tried to turn around so I would hold him close as in fear. This happened over two doctor's appointments.  After I learned this at our first appointment, I began to observe more closely how he 'saw' the world.  When he plays with puzzles, he turns his head to the right so he can use his left eye to see and assist his right eye to work.  I also have realized he doesn't use his vision for fine motor skills.  He uses his mouth and his hands to feel his way.  Again, with puzzles, he doesn't always look at the puzzle to fit the pieces together...he puts the piece in a hole and tries to jam it in with his hand..while looking elsewhere.  Same with using his pincer grip...he doesn't look to what he is doing or grabbing for...he just shoves it around with his hands or mouth until he gets it in his palm.  So we have some work to do with helping him use his eyes...and get his brain to recognize his right eye.

So today we decided to get the kiddo some glasses.  They will be  prescription and we will slowly work to shade in the left side with clear fingernail polish to force him to use his right eye.

I swear he looks like Huey, Dewey, and Louie duck...you know...Donald Duck's grandsons...haha! Can't wait to get a picture of him wearing them.  Or at least hope he keeps them on.

But again, I'm learning so much with this little man.  And enjoying every minute of it!  I can't wait to see what we learn next.
So that's a 60-second wrap-up...keep you posted with pics later.

 

Autum seems to think Leah stinks during their cheerleading stunt practice!

Autum is just a little too fluffy for Leah's throwing/stunt strengths!