Friday, June 21, 2019

It was the best of times, it was the worst of times...

This sweet guy.  Alex doesn't have summer school on Fridays.  We dropped off Kai at his STEAM camp at KSB but had to be back at 10:30 for their program.  I didn't want to go home to turn around and come back, so we stayed in town.  Louisville is full of little pocket parks.  So Alex and I explored four different ones.  We were all over Germantown, Highlands, Old Louisville.  He had a blast!
It was interesting to me to watch and feel each different little community. We stopped to grab a treat at the bakery across from KSB.

As we waited for the program to start, Alex was getting really agitated and restless and NOISY!  I was afraid, not scared, but afraid his behavior which was so opposite from the morning was trying to tell me something.  I was trying to keep him quiet (not working) but also listen to the program and Kai's part (precious).  Miss Patti, one of his aides from last year, offered to take him outside so I could listen (Thank you! Yes!!)  He came back in after a while, and sat in a chair beside me.  The program was over and we were talking and I looked down (just felt weird) and he was having a seizure - drool, stiff but with a slight tremor, and totally gone.  It lasted about a minute and then he curled up in my lap and went to sleep.  I'd say about an hour later, he had recovered.  He wasn't totally up to running and jumping, but he was moving and making sounds again, so we left.

About an hour or two later, he came into the room and curled into my lap and went to sleep.  There is a certain position he wants - because he's weak and can't hold himself up.  An hour later, I was tired, so I laid him down on the couch.  He didn't wake up.  Occasionally he would move, but he would make these smacking noises with his lips, teeth, and tongue (hard to explain) and then go back to sleep.  So then I started worrying.  Was he seizing?  Was he in status again?  Another hour passed and finally he woke up.

So it was a long afternoon.  The new med worked for three days.  Sigh.  What is going on in my baby's brain?

Thursday, June 20, 2019


Sunday Alexs new med was doubled. And things have been quiet on the seizure front, and I’ve been waiting and waiting. This afternoon he had a short seizure and then slept for about an hour and was groggy for about thirty minutes.  That’s it- since Sunday. What a change! I am so grateful!

Wednesday, June 19, 2019


On the way to drop off Kai to school, a song was playing on the radio that reminded me that this life is temporary, a test.  That I'm hoping one day to sit down with my Father and for Him to tell me, "Well done."

I was grateful to hear that song today.  This morning before the bus picked up Alex at 6:45 AM, I had already steam cleaned a quarter of the main floor of my house, and then finished cleaning up after he left.  Sigh.  Kai even agreed - "Stink!" But that song reminds me of where my perspective should be.

So today I am so grateful for washing machines - we don't have to wash laundry by hand anymore!
Sprays and powders that add a different smell to the laundry and room!  Steam cleaners!  Essential oils! That I only have carpet on my stairs, and that we got the good carpet that cleans up well!  And for the knowledge that while this is our sweet Alex now, it won't always be.  He is a sweet, funny boy in a body with a brain that works quite differently right now.  One day that brain will be perfect!  (from my reading last night in Mosiah 16) Until then, I cherish the boy I have.  Love ya, Alex.

Today I heard this song:

The line that jumped out to me was "You guard my soul."  I was just struck.  One of my daughters is annoyed that the answer to all of the questions we ask her during Family Scripture Study or at church are always the same - read your scriptures, say your prayers, go to church, blah, blah, blah.  But that line, you guard my soul, reminds me that as we do those basic Gospel principles we put ourselves in a position for the Lord to have influence in our lives (again a principle from Mosiah 16).  What a comfort!  What a blessing!  Life happens.  Trials come. But He will walk with us and hold us if we allow Him to, and part of that is doing those things that invite Him to be with us.  Grateful for those days that I chose to follow Him, and He guards my soul.

Tuesday, June 18, 2019

The quiet old lady...

So how am I doing with just me and the boys at home?  Pretty good.

Turpins still came over for Sunday dinner, which was incredibly awesome, by the way.  Sunday night Alex’s new ESY teacher and I talked about all things Alex (thank you Ms Moss! This Mama was about to have kittens!). Monday Kai and I ran errands, WalMart, Dentist, Bank, Haircut, UPS store, and library. Why do I record that? Because that’s a LOT of transitions for this guy - and he was awesome! Tuesday both boys went to school. KSB is having a one week STEM camp and a spot opened up for Kai.

So how’s Alex? Doing well. Kinda waiting for the next shoe to drop. He’s had two episodes since Sunday, but nothing I would swear was a seizure!  Sunday we doubled his new med. Behavior wise - not screaming as much.  At drop off the bus ladies said he wasn’t screaming. He was kinda quiet, they said. My Alex?  And tonight during story time, I witnessed a miracle!!  Every night we read Good Night Moon by Margaret Wise Brown. And every night we pause at the line, “and the quiet old lady whispering.......”. (The next word is hush for those of you don’t have this book memorized.)  I wait and Jason or Kai will say, “hush” and then I’ll keep reading.  TONIGHT I paused as normal and Kai said, "hush,” and ALEX SAID “Shhhh!”  I almost cried!  A verbalization!!  I don’t know how long this new drug will work for Alex, (we get used to drugs and have to shake things up) but I am SO GRATEFUL that right now he is a little calmer, no big seizures, and a verbalization!! I will take it gladly!!

Saturday, June 15, 2019

And they’re off...

Family vacation started today!!  They all piled into the van and headed South. They will spend a week at the Lake House - boats, jet skis, fishing, and family. What could be better? Well, maybe if we all went...
Alex, Kai, and I stayed home.  Everytime I would think about Alex and the Lake House, I would get this overwhelming sense of dread. So reluctantly I brought it up with Jason and we agreed he and I should stay at home while the family went on vacation. And instantly I was lighter and happier. I knew it was the right decision. I wish we could all be together, but this is the best thing for our family right now.

We decided Kai would stay with me. He doesn’t do well with new and unexpected changes in routine.  The family leaving was hard on him. He had a meltdown, but settled down after a while. He and his Grandpa have a special relationship. Gary and Sandi kindly came over and spent some time loving on our boy.  He’s fine and got to talk to everyone on the phone a couple of times. It was sweet.

So Day One of vacation is in the books.  I spent the day cleaning up after the boys. The travelers traveled. (That’s a long drive!!)

Thursday, June 13, 2019

And the spiritual side of things..

Last night I read Mosiah 14:3, which is a quote of  Isaiah 53:3

He is adespised and rejected of men; a man of sorrows, and acquainted with grief; and we hid as it were our faces from him; he was despised, and we esteemed him not.

The phrases "we hid as it were our faces from him" and "and we esteemed him not"
kept floating around in my head.  I thought about my Savior and wondered if I was turning to Him as much as I could be, should be.  And decided I probably wasn't.  

The next morning (this morning) I read this from a group I follow on Facebook:

It was one of those days when my kids, my house, and I were all about to simultaneously explode.
It was noon, and I opened the freezer.
Reaching for the good ol’ chocolate ice cream.
Cause, hot dang, I deserved it.
And a thought came:
You reached out to ice cream before you reached out to me.
Maybe you deserve ice cream..
But you really deserve Jesus
The thought didn’t fill me with guilt.
It brought relief.
And made me pause.
And as I ate my ice cream..which I also deserved.. I wondered, why is it so easy and natural to lean on other things instead of our Savior?
The power of the Savior’s atonement is not just the redemptive power of making a bad man good, but also His enabling power to make a good man better.
It is easy to think about the Savior’s atonement when we screw up.
But when we are in the thick of school or motherhood or tiredness or anxiety or life...sometimes it is easy to forget we have a source of everlasting strength waiting for us to use.
“Grace is not our booster engine that kicks in once our fuel supply is exhausted. Rather, it is our constant energy source. It is not the light at the end of the tunnel, but the light that moves us through the tunnel. Grace is not achieved somewhere down the road. It is received right here, right now. It is not the finishing touch, it is the finisher’s touch.” Brad Wilcox
Whatever you are suffering today, Christ has already suffered it.
Now he is waiting quietly by our side.
Hand outstretched.
Peace, waiting
Light, waiting
Strength, waiting
For us to reach out and grab.

Obviously, the Lord wasn't finished teaching me about that verse last night.  I am grateful that He loves me enough to send me so many messages that He is there and waiting for me to turn to Him through all of my trials.
So naturally, being a Mama, I had to share this beautiful truth with my babies!  So here is our scripture study tonight, doing our masks, eating our ice cream (Yes, I was setting them up for the feels), and then reading from the scriptures and from this devotional.  What a blessing to be a mother and be allowed to share the Gospel of Peace with my children!

The gift of being understood

I can't tell you how many diapers Alex took off today or how many showers he had or times we had to clean up the floor after him.  But there were some choice moments today - like at bedtime when his face was content.  

Today Alex resumed OT.  He only does private OT during the summer.  During the rest of the year, he receives OT through school.  I loved hearing the progress the OT noted he has made since last summer - waits better, transitions better, attends better.  Wahoo Alex!

It was so nice to talk with her.  With Alex, I stay during therapy instead of waiting in the waiting room.  Besides we needed to catch up on his medical history and the drugs he's taking.  But the part I love is in private therapy, it's about Alex - his whole life - not just the academic side of things.  So we talked about his appointments, his drugs, his upcoming tests.  We talked about the holes in my drywall, about the showers, about what the doctors have said to me. I verbalized some things I only think about.  I talked.  She listened - and understood.  No, she doesn't have her own Alex running around.  But this is what she has done for years and years.  She has walked this path with other mothers and other Alexs.  What a relief, what a blessing to talk to someone who doesn't bat an eye when you talk about poop and strange behaviors. Someone who offers suggestions that might help the family as a whole.

Alex loved therapy today.  He swang.  He threw balls of varying weights (he LOVES the impossibly heavy one). He got deep pressure squeezes from me.  He waited and transitioned.  And I came away with the same load, but a lighter heart.  I am so grateful we have therapy!!

Wednesday, June 12, 2019

Back to the Blog I go..

At one time I was a faithful blogger.  I think that was more to prove to myself that my family was good and we were fine, despite our challenges.
It seems it's time to start blogging again for the same reason.  Because my life seems hard right now, and I need to prove to myself that my family is good and we are fine, despite our challenges.

Not the kind that people talk about.  Not the kind where the child knows everything about a subject.  Not the kind where the child needs social stories to be able to handle new situations or changes in routine.  Not that autism.
No, I'm talking about the non-verbal, poop smearing, constantly stimming, has no idea there are other people in the room (expect occasionally to meet his needs), eats drywall, your doctor talks to you about residential living arrangements kind of autism.

In my mind, there are three autisms - high functioning, then what people think about when they hear autism, and the severe kind ... the kind Alex has.

We have the sticker on our car.  We go to the occasional autism activities - for the other SN kids in my family, but Alex is always left at home.  And he doesn't care.  He doesn't notice.  He couldn't care less.  It's not like he's dissing the group.  It just honestly doesn't even come near his world or enter his mind that there is more out there.  His world is spinning and swinging and banging and putting everything in his mouth.  His world is his cookies and his chew clothes.

And then there's EPILEPSY.

Which has been killing us over here lately.  The other day my 16 year old was bagging my son!  (translation: she was using an ambu bag to force air into his body while he laid on our kitchen counter.  His 20 year old sister was timing the seizure.  His 18 year old sister holding him on his side because he was salivating so much there was danger of his saliva going into his lungs.  Where was Mom?  On the phone with 911.)  My big kids can go from self absorbed, doing their thing to totally focused on a small seizing brother instantly.  They were trained in the school of life how to care for him.  My 12 year old asks if we are going to have to call the fireman whenever Alex gets sick.  (because the fireman are just around the corner and respond to our 911 calls very quickly.)

Alex used to have long scary seizures, but very infrequently.  Now he has multiple seizures a day.  They are short, but they leave him having to sleep them off for several hours.

Which brings us to our newest normal:
Periods of autism, followed by postictal Alex, followed by autism.

I am tired, so tired.

There is another side to Alex that if I'm being 100% honest, I have to record.
Alex is a funny and loving child.  He delights in his toys - anything that makes noise.  His laugh and smile can light up the room!  And after he's had a seizure, as well as other times (I think he needs the deep pressure input), Alex cuddles.  And it's the sweetest thing.  And he loves it when you repeat his sounds!  He has learned a song, "Are You Sleeping?" and he LOVES it when you repeat it after him.  Fortunately, it's a repeat kind of song:
Are you sleeping?          Are you sleeping?
Brother John?                 Brother John?
Only he doesn't use words, but he makes his noises and we know it's that song.
And he can be taught.  If I say, "Brother, pray time!"  He puts those little hands together so fast - and it's precious beyond words!

We love our Alex.  He is our precious, sweet boy.  But I am tired and a little scared of what the future holds for him.  I do not like these seizures - or all of the drugs we are pouring into his body to try and get them to stop.  Hang in there, buddy!  We are trying to figure this out!