Tuesday, November 21, 2017

Autism and Alex

My sweet boy.  I believe with all of my heart in the literal resurrection of the body.  That one day this mortality will put on immortality.  This corruption will put on incorruption.  This sweet boy will be resurrected with a brain free of scars and abnormalities.  I love his sweet spirit!  I love his belly laughs!  I love his smiles and giggles!  I love our Alex!  And…I look forward to the day his sweet spirit is free from autism.

Alex loves to listen to music – he loves a beat – and a repetitive rhythm.   He loves to twirl – like an ice skater.  You know, when the person tucks their limbs in so they can go faster and faster.  Yes, that is Alex, but he is in his bare feet on the hard wood floor.  He really is amazing!  He loves to swing.  We have two swings suspended from the ceiling.  He goes back and forth, kicking the wall for momentum.  Or he swings round and round till I would be sick from the rotations.  He craves noise – he loves spinning bowls – truly it is a difficult task to rotate a bowl so it will spin over and over again.  He flicks his wrist just so and the bowl just goes and goes.  It delights him.  He loves the sound of metal – metal utensils in metal bowls, especially.  He loves tickles and cuddles.  He just can’t get enough input, enough stimulus for his brain.  He craves it.  He loves it.

He loves his routine.  From what I understand it is calming to follow the same routine over and over again.  He loves when the school bus comes.  He knows where his chair is and runs so happily to sit down for a cookie at snack time.  He loves his bedtime story.  His fav is Goodnight Moon by Margaret Wise Brown. He has let me branch out a little lately.  We read I Like It When and he liked it.  All of his books have braille – and he loves to feel the bumpy braille!  And I love that when his story is done, he giggles and puts his hands together for prayer.  I love this sweet monkey!

But sometimes things go wrong – like today.  We were walking down the hall to therapy.  He knows that hall.  He uses his cane to find the difference between the lobby and the hallway – there is a slight difference in height – he always finds that.  He walks a few feet down the hall, then he starts giggling because he knows what’s coming.  On the wall, about waist high, there is a metal plate that when depressed opens the door to pediatric therapy.  He loves to hit that plate.  There is a click as the door is released and then it swings back to allow entrance.  Well, today, for some reason, there was no click.  The door silently opened.  And my son lost it.

Now it could be that we are out of routine – school is out this week for Thanksgiving Break.  It could be that he was hungry – it was 11 AM and he usually has had snack at school by then.  Who knows what it else contributed, but I know what it was.  The door didn’t click.  Rage.

It amazes me that such a sweet little soul can contain this much anger and rage.

We tried to help him, a cookie, changing rooms, taking off his coat, but it occurred to me that this wasn’t stopping till we heard the click.  So we went back out.  I closed the door.  And we depressed the plate again together.  And, mercifully, the door clicked.  And Alex was back!

He happily sat down and ate the cookie and juice I had brought.  He laughed and giggled.

Sigh!  Goodness!  I am grateful for that knowledge that tells me what he needs and what is upsetting him. 

I remember sitting in church a while back.  A man was talking about the Holy Spirit and how it guided him.  His daughter was born with severe disabilities.  She could not communicate – at all.  And yet her Dad felt like he knew when she wanted to watch a movie or be held, or any numbers of things.  He felt it was the Spirit leading him as he cared for his daughter.  I remember knowing things about Bella.  I think most parents understand this to some degree.  We say we know our children.  We know their cries and what they mean.  But I do believe that He especially guides us with these special, sweet ones.  To let us know how best to care for our special spirits.  To let me know how best to care for my boy.  It’s something I pray for every night, “Please help me to be the mother that each of my children needs.”

So after today’s door not clicking, my reaction, that, to me, was an answer to prayer.  Our Heavenly Father knows and understands Alex and his thoughts, needs, and desires.  I am so grateful Alex and I have this Divine Interpreter!

(swinging in the therapy room to make sure we were regulated again)


Monday, November 20, 2017

And it came to pass…

Last night as we read our scriptures, I told Bella it was her turn.  That means she will then repeat the words I read from the page.  “Bella, your turn.” I said.  To which she responded, “and it came to pass.”  :)  We all laughed and laughed.

Fast forward to tonight.  Our family seems to have contracted some little bug – nausea, headache, nothing bad, but just enough that you want to lay down.  After reading as a family, Jason called on Lizzy for prayer.  In her sleepy/sicky state, she bowed her head and started, “And it came to pass…”  Cue the laughter.

While it’s funny, I’m so glad this phrase is one so familiar to my family!  :)

Tuesday, October 31, 2017

Halloween 2017

(The cutest one year old out there!)


Becca, Blake, and Liz made these cute skeleton shirts.  Bec had seen a similar shirt online and didn’t want to spend the money they were asking for it!  So we made them.  Black shirts, white paint, and a blown up picture from the internet of the rib cage and we had Halloween shirts!

Just love her little baby skeleton!  <3


Ellie was an adorable pumpkin.  Blake a lumber jack.


Sammi participated for a bit.  She dressed up as a witch.

Jessi and Lizzy (with Becca and Daddy) wanted to hand out candy.

Joy was a zombie.  I don’t know why.  But she got the idea several weeks ago and she wasn’t letting it go.  So we went with it!!  Sammi did her makeup and Jes made her costume.  She was totally in character the whole night!  She is so funny!!


Bella was a Ballerina.  She changed into her costume when she got home, then layed on the couch.  She wasn’t interested in walking around outside – you crazy people!

Alex had no idea it was happening – the joys of autism -  so he stayed inside and danced to his music.

Jason decided that we would have a fire in our fire pit.  It was a chilly night and absolutely perfect for a fire!  We had a great time, sitting around, handing out candy, eating candy, laughing and talking.  A great Halloween!


Tuesday, October 24, 2017

Will this ever end?

I was watching a show today on Netflix and it was the Christmas special. The music, the family, the lights, the feels....I am not a crier, but there was definitely a wetness to my eyes. PLEASE process, be fast and let me get my boy!  I’m irrational and just want him HOME!

Where we are in process…Visa applications going to Embassy tomorrow.  One week into I800 wait.   (Still PRAYING for a December pick up!)

Kai, do you understand we are coming?  Do you understand how much we physically ache to have you home?  How grumpy and irritable we are getting because we want you HERE, not represented as a pile of papers on someone’s desk?  We want to touch you and see you.  We want to count your toes and fingers.  We want to hear your laugh – and see you eat!

Kai, do we understand how hard this is going to be for you?  How everything you have ever known is going to be GONE – poof!  one day because two strangers came and picked you up?  Do we understand the depth of trust it will take for you to reach out and let us help you?

We have never meet you, Kai, but we love you!

Monday, October 23, 2017

Sedated EEG

Results are in.

Still abnormal with spike wave activity

Increase his meds – again.

Sigh.  Here’s hoping that helps. 

Wednesday, September 13, 2017

The most significant

just processing....Alex was invited to participate in a new program to help with his communication. I have to give my approval, so I looked it up. Sounds very promising, until I get to this line, ". . . services to students with the most significant disabilities in KY public schools."  (little bit of a gut punch there)

Sigh.... the most significant... that's sayin' somethin' in educationese.

Alex is challenging.  Alex is also a sweet and loving boy.  I love him so much!

(and I am grateful to his school for looking for new ways to serve his needs.)


Wednesday, August 09, 2017

Alex’s Neuro Appt

With his recent seizure activity, they had us come in today.

Yes, it is common to have seizures during sleep.  I need to make a HUGE point of getting his seizure med into him before he goes to sleep.  Yes, seizures can look horrible as the little ones turn blue.  And yes, kids with autism are EIGHT times more likely to die after a seizure than the rest of the population. 

Death chances increased + seizing at night = something else for me to worry about!

We are going to do another sedated EEG in a month to see if this dose is good or if we need to go up.

Interesting thing – some of his misfirings in his brain are in the left temporal lobe – right there by his speech center, which doctor said might explain some of him being non-verbal still. … he is so interactive with people, and sweet….  But if his brain is misfiring right where expressive speech is controlled………..he’ll be nonverbal.  Prediction for future…..we may only get 20 words or so.  Sigh.  But controlling those misfirings may help in that department.  As with all things seizure related, we’ll just have to wait and see.

I was thinking of my friend and my nephew who have both recently had surgery to remove the parts of the brain that were causing their seizures, but we have multiple points, not just one or two.  Sad smile  Oh well.

On a happy note, making his follow up appointment, I realized Kai will be home by then!

Thursday, August 03, 2017

duPont Manual High School

Big day – orientations at both Manual and YPAS (Youth Performing Arts School).  Lizzy is excited (and nervous)!  Here’s to a great year!!


Saturday, July 29, 2017

Saturday Morning Explore

Such a beautiful morning – in the 60s!  It’s been so hot and yucky.  I’ve been stuck in the house.

I needed this morning to be out and to explore – and it was awesome!

We stopped and grabbed donuts then drove over to Harrods Creek Park.  It’s kinda hidden, but so wonderful!  I could feel my spirits raising with each second!


Loved hearing Bella say, “Mommy, yook!”  and watching her hike!  Even Joy enjoyed the hike and with all the problems she has been having with her feet lately, that was awesome!


Alex loved the grassy areas after trying to walk on the gravel path (hard to do with a cane!)20170729_09545320170729_095942

But he LOVED the water best of all!!



Jason found this cool swing on the trail. 


(Where are Jessi and Lizzy?  Being awesome and helping out at a Stake activity)

Thursday, July 13, 2017


Sigh.  First time to use it tonight. 

Grateful for phones that we can easily record and time seizures.

Grateful the diastat stopped the seizure.

Grateful we didn’t have to go to the hospital

Grateful we hadn’t put him into his bed yet. He falls asleep in Mama and Daddy’s bed every night.

Grateful to the nice lady at 911.

Grateful to the nice NP who was the Neurologist on call tonight.

Grateful that my boy is sleeping and oxygenating well now.


Love my boy!


Tuesday, July 11, 2017

Kai’s Birthday

Yesterday was Kai’s birthday – he turned eight years old!

We celebrated by having cake in his honor, trying to learn some new Mandarin phrases, and watching Off The Great Wall youtube videos.  Smile


Kai celebrated with cake as well!  (We sent him a care package)  They sent us some pictures!  Oh my heart could explode!  He looks so big!  Hurry up paperwork, I need to get my boy!

lu zheng kai (1) (1)lu zheng kai (3) (2)lu zheng kai (4) (1)lu zheng kai (2) (1)

Thursday, June 29, 2017

Falls on the Ohio State Park

While the littles are at their camps, we try to do something fun!

Today we went to the Falls on the Ohio State Park, then drove downtown to try out Steel City Pops.  (Lizzy has been wanting to do that for so long!)