Exploring

As Victor has become better able to regulate his emotions and outbursts, we have been "exploring" (as he likes to call it) more. Exploring can happen at the grocery store, Dollar Store, Tractor Supply, and most recently, the pet store.

These explorations double as cane skills practice.

I think the pet store was his favorite exploration so far. He can see a little out of his right eye if the object is well-lit, has enough color contrast, and is close enough.

And some of the animals were!

The mice were by far his favorite!

What most of us don't realize is that the animals can be explored with hearing, too. Try it sometime. Go ahead and stick your ear right next to the mouse tank. What do you hear?

And, possibly one of my favorite places to explore - the frozen yogurt place!

Pass the oregano

That morning I awoke to the sound of quiet sobs.

"Victor, are you okay?"

"Yeah, I'm fine." He sounded bright and cheerful. Since he is the only other child whose bedroom remains on the main floor of the house, I knew it couldn't be anyone else. And since he's technically not supposed to talk to anyone until 6AM (even if he wakes 2 hours earlier - can you say "Non-24 Syndrome?), I let it go.

A few minutes later, the same noise. I decided he must be pretending.

At the proper hour (6AM), I got up and got a shower. I thought I smelled oregano so I checked the essential oils bottles in my bathroom. Everything had a lid and nothing appeared to be spilled. I let it go.

Soon after, I heard a light tapping at my door. We've come a long way from just barging in...

He entered the room. I noticed that his eye was red and puffy. Constantly bumping into things must be one of the most frustrating parts of being visually impaired.

"Victor, did you bump into something? Is that why I heard crying?"

"Yeah, I bumped into the wall."

The incident, as he told it, didn't seem to fit with the location of the injury but, I let it go.

He also had bed-head so I told him he needed to get a shower. For once he didn't argue. He got in the shower and I went to his room to get his clothes.

And that's when I saw the opened bottle of oregano sitting next to his diffuser. Now it all made sense. The crying. The smell. The red eye. I even remembered that his whole face was red and he kept looking down as if he was avoiding the light.

The mom I used to be, before being a "trauma mom", before parenting kids from hard places, would have focused on the lie. She would have marched back into that bathroom and demanded the truth along with an apology, along with a consequence of some kind. She would have taken the lie personally and lectured on the need to always tell the truth.

She wouldn't have been wrong about that last part but she would have been very wrong about why it happened and what needed to come next.

But there are two important things I've learned as a trauma mama. The first is that all negative behavior has the same root cause: fear. The second is that connecting with grace needs to be my go-to, every time.

Sometimes it takes me a while to get to that grace part. This particular morning, however, I found myself filled with compassion for my little guy with so much fear and frustration.

Very gently, after he had emerged from the shower and started drying off, "Victor, can you please tell me the whole truth about what happened this morning?" No yelling. No accusations. No lecture.

The response was quick and confident, "Yeah, I was trying to fill my diffuser and I had some trouble."

"Victor, I'm sorry that you don't trust me enough to tell me the truth. I'm sorry that you felt like you had to lie. You are not in trouble. I hope that the next time you know that you can tell me the truth. I'm sorry that you hurt yourself. How are you feeling now?"

He smiled. He was fine. We hugged.

Healing for these trauma kids is slow. It often feels like 1 step forward, 5 steps back. But we're getting there and he's come so far.

There is no fear in love. But perfect love drives out fear, 

because fear has to do with punishment. 

The one who fears is not made perfect in love.

1 John 4:18

I'm not perfect and there's grace for that, too. As I sit here after the kids have gone to school, the house quiet yet smelling of pizza (with LOTS of oregano), I am thankful for how far he has come and hopeful for the future.

Noah and Formerly Known as Botty

Just before Mr. Victor and the Good Doctor walked out the door for the bus, Victor yelled back at me, "This would be a good time to write me another Noah and BB-8 story." I smiled. Partly because he is always needing to be in control. Partly for the grown-up way in which he attempted to prioritize my day. Mostly because he wants me to write a story so he can read it.

Like a good mom-who-used-to-be-a-teacher, I try to have him read everyday.

The problem is that his Braille skills are somewhere between kindergarten and first grade (through no fault of his teacher - it is what it is). His cognitive skills are several grade levels above that and his vocabulary is closer to middle school.

Reading books with limited vocabulary and no plot has been less than motivational for him. As in, zero motivation. It's like pulling teeth. Literally since not only is he visually impaired he's also sensory challenged. Pulling his teeth out is like the proverbial pulling of teeth. If the idiom fits, you wear it.

So I put on my teacher hat, the one with the special education degree, and tried to think outside the box. What would motivate this unique, visually impaired, sensory challenged, and need-to-be-in-control child to read?

Robots, of course. And Star Wars. And stories with at least some kind of plot and conflict.

The first story was about Noah (Mr. Victor's middle name) and his robot which I named Botty.

Mr. Control read the story and told me the robot's name was stupid (subtlety is not his middle name). He also told me what the name needed to be. Actually, he gave me three choices - all characters on Star Wars, of course. With my apologies to the copyrighters at Star Wars, by Story #3, Botty had a new name (one beginning with the same letter as his old name but since I don't have enough money for copyright infringement fines, we'll leave the actual name up to your imagination).

Then he insisted that Noah needed another robot, and again strongly advised me on the naming of said robot.

Just a few stories in I could already see improvements in interest, fluency, use of context clues, and his desire to phonetically sound out an unknown word.

20 stories in and we're still going strong!

We celebrate

September 18, 2013

Diagnosis Day

It's been 5 years since learning that Victor is visually impaired with a neurological condition that not only affects his optic nerves but also his behaviors and could someday cause pituitary issues as well.

So today we celebrate.

We celebrate the friends who have walked this journey with us, who have cried with us but who also understand my need for laughter so full-on belly laugh with us as well!

We celebrate the siblings who love him so well and the extended family members who seek to understand him and who accept him as he is, tantrums, bad words, and all.

We celebrate the wonderful doctors, therapists, and instructors who have come our way. And for the few we didn't like, we celebrate that upon their "firing" we were given amazing replacements, better and more knowledgeable than we could have asked or imagined. We celebrate those who were with Victor until he graduated from their program, and most especially those who have stayed in touch.

We celebrate the amazing team of educators and specialists who love on Victor at school.

We celebrate the peers who see Victor as just another friend. We celebrate the parents who see Victor as a learning opportunity for their children, not as a bad kid who might teach their child inappropriate words and behaviors.

We celebrate the miracles of sight.

We celebrate the Braille skills he has learned.

Fishing for letters in school. 

And yes, there are Braille

letters on those cards. 

I checked. 

We celebrate the orientation skills he has learned and that as of yesterday, he is ready to begin using his cane in the real world.

We celebrate the safety and protection God has over this child who is not afraid to try anything, even with only a pinpoint of sight out of one eye. I'd say that just one trip to the ER for stitches in 5 years with this child, is nothing short of miraculous.

We celebrate the improvements, sometimes small, in focus, regulation, anger management, verbal outrages, and physical attacks.

We celebrate his loves - drumming, beat boxing, music, Johnny Cash, Frank Sinatra, Dolly Parton, the Beatles, his rabbit, his chickens, finding eggs, listening to stories, Sunday School, jumping, spinning, swimming, his big friends who love on him, his siblings, Baby Olivia, movies Sing and Cars, cats...

We celebrate the sweet and loving moments. We celebrate the hugs and kisses and kind words.

We celebrate Victor.

Most importantly, we celebrate a God who made Victor with a purpose. No part of Victor is a mistake. No unanswered prayer is without a greater plan. We celebrate faith.

So we fix our eyes not on what is seen, 

but on what is unseen, 

since what is seen is temporary, 

but what is unseen is eternal. 

2 Corinthians 4:18

Victor-isms to end the year

V: Hey, Jesse, I'm blind. I can only see a little bit out of this eye (pointing to his right) and this one (pointing to his left) is just for decoration.

*We have no idea where he got this idea of having an eye just for decoration.*



V: Mom, what's this?
Me: A yardstick.
V: Why's it so long?
Me: To measure long things.
V: Like an elephant's trunk?
Me: Sure.



Me: Victor, it's time to get dressed. What would you like to wear today?
V: Dance party clothes because I'm dancing with my record player.
Me: Okay, what do dance party clothes look like?
V: (Starts to dance)
Me: Great but what do dance party CLOTHES look like?
V: My Batman shirt and tight pants.
Me: Okay then.



V: When are you going to put up the mistletoe?
Me: How do you know about mistletoe?
V: Eden told me. Mommies and daddies kiss on the lips under it.
(Eden, when questioned, explained that she and Victor were singing Have a Holly Jolly Christmas and he wondered what the mistletoe was.)
V: So, where do you have the mistletoes?
Me: I don't have any mistletoe.
V: I want one for my birthday, for you to hang up. Can we buy some? Can you look for some at the grocery store?

*Victor finally found his mistletoe at Uncle Blair's Christmas dinner on Sunday. He was very pleased to be able to kiss Mariana and PopPop under the mistletoe.*


A conversation with a special friend who spent the day with Victor:

Victor: Are the bags on the seat beside you?

Friend: One bag is on the seat beside me. The others are in the trunk

Victor: The elephant's trunk?

Friend: No, the trunk of the car.

Victor: Is it big?

Friend: Yes.

Victor: Like the elephant's trunk?

Friend: No.

Victor: The elephant's trunk is long.

Friend: Yes, that's right. Did you learn about elephants at

        school?

Victor: No we don't have elephants at school. Do you

             have elephants at your house? Does Rylee (a pet bunny) like

              elephants?

Friend: No, I don't have elephants at my house and I

        don't think Rylee would like them.

Victor: I don't have elephants at my house because

            they poop. Where are elephants?

Friend: In the jungle or in the zoo.

Victor: Do you go to the zoo?

Friend: I haven't been to the zoo for a long time.

Victor: I want you to go to the zoo. Go to the zoo

            tomorrow.

Friend: Would you like to go to the zoo with me?

Victor: No I'm too busy.



Another conversation with his special friend who had also taken him to lunch at the retirement community where she works:

Friend: Victor, I need both hands to carry our plates, so

         I need you to hold on to my pants so I know you

        are with me.

(He did exactly as asked.)

Another staff member: You did a good job listening. You are a good boy.

Victor (with a huge smile): Yes, and I'm soooo cute too! [😊]




And on the way home from his special time with his friend (he was on a roll that day):
On the way home:

Friend: You are such a big boy.

Victor: I'm 4 and next I'm 5.

Friend: Then you can go to kindergarten.

Victor: No, I won't go to kindergarten because I might hate kindergarten.

(That was the "word of the day". Everything was either "I hate..." or "I used to hate...")

Friend: You might like it. I think you should go to kindergarten.

Victor: I can't go to kindergarten.

Me: Why not?

Victor: I have to go to high school with Isaac.



Mariana: Victor, I love you.
V: I love ham.


S.S. Teacher: Who is going to sing in the children's choir Christmas Eve?
Victor: (Proud smile on his face) I am! I'm the best singer in the world!



V: (Upon entering a room) I don't like quiet places.

*No other comment needed. That's Victor's life in a nutshell. And ours.*

Parent/Teacher conferences

Okay parents of more than one child: Some parent/teacher conferences are more enjoyable than others. Let's just be honest and admit it. As you might expect, Victor's could be of the sort that would cause sleepless nights and tears. However, he is in the most amazing preschool and I just love chatting with his positive and encouraging teachers. Remember that child the ophthalmologist said would never see anything, not even light and dark, and who didn't like to admit that he was wrong even when we showed him the yearly miracles (side note: we don't go to that doctor anymore)?

Well, today, that child was found spontaneously sorting manipulatives by color. I even saw the video where he happily held each bear up to his right eye (the one with a pinhole of vision), stated the color (yellow-yellow, blue-blue, etc.) and placed it in the correct oval.

He enjoys painting and participating in crafts.

"I made a string through it."

And he's using his cane at school - without banging or hitting!

He's even starting to interact with peers in a closer-to-age-appropriate manner. But of course I can't include pictures of children that don't belong to me.

We have many more hills to climb and hoops to jump through but since it's about progress, not perfection, we celebrate each and every VICTOR-y!

Victor's talented fingers

He may still wake me in the middle of the night to tell me that his MP3 player needs to be charged or his CD is skipping or just to ask me why we did a certain thing during the day...

He may still wake way too early most days...

He may still refuse to get dressed most mornings...

He may still pinch, bite, hit, or scratch me most every day...

He may still be the pickiest eater I've met...

He may still soil his pants most days...

He may still have a need to be in control 24/7...

And he may still take an hour and a half to go to bed, asking for a drink of water, or a new CD, or to sleep on the floor rather than his bed, or to give everyone a hug, or to make sure his imaginary friends make it into bed with him...

But Mr. Victor sounded out and read his first words last week...M-O-M and D-A-D...

...and typed the word ball on the Brailler all by himself.

Such talented fingers!

Hope

Therefore, brothers and sisters, 

since we have confidence to enter the Most Holy Place by the blood of Jesus, 

by a new and living way opened for us through the curtain, that is, his body, 

and since we have a great priest over the house of God, 

let us draw near to God with a sincere heart and with the full assurance that faith brings, 

having our hearts sprinkled to cleanse us from a guilty conscience 

and having our bodies washed with pure water.  

Let us hold unswervingly to the hope we profess, for he who promised is faithful. 

And let us consider how we may spur one another on toward love and good deeds, 

not giving up meeting together, as some are in the habit of doing, 

but encouraging one another—

and all the more as you see the Day approaching.

Hebrews 10: 19 - 25

Victor: Mom, I pooped!
Me: Great! Thanks for telling me.
Victor: Come see, Mom!
HopeAnne: You have the best job in the world.
Me: *eye roll*

This is Victor. Each of these tiles has a Braille letter embossed on it. The other day, Victor played with this 3 different times, for more than half an hour each time. The first time he worked on identifying the Braille letters that he knows, and arranging them to make words. The second time he asked for the board and tiles, he arranged the tiles in 4 lines across the board. The final time, he diligently worked at placing the tiles around the perimeter of the board.

What do these two scenarios have to do with the Scripture passage at the top?

HOPE

Because whenever I find myself losing hope, it's because I've misplaced my hope. When my hope is in Victor and his ability to meet goals and milestones, I feel dejected and without hope. When my hope is in therapies and doctors, I am disappointed and without hope. When my hope is in myself and my ability to "deal with" Victor, I am angry and without hope.

But if my hope is in Christ, I can see through His eyes. I can see how far Victor has come and I can remember the promise of his eventual victory. It's only taken us 2 1/2 years but that particular body function finally finds it's mark in the porcelain throne 90% of the time. And just 6 months ago, Victor would not have been able to sit still to play with the Braille tiles. He wouldn't be able to recognize almost 10 Braille letters because he couldn't sit for 15 straight minutes of instruction. He wouldn't have been able to carefully line up his toys like so many of his peers because he would end up throwing them in frustration before even starting.

Where is your hope? In yourself? In professionals? In perfect circumstances? In governmental leaders? In degrees? All of these will fail and you will lose hope. But by putting our hope in Christ, hope never, ever fails.

May the God of hope fill you with all joy and peace as you trust in Him, 

so that you may overflow with hope by the power of the Holy Spirit.

Romans 15:13

Immeasurably more

Victor's bedhead this morning was just a bit disconcerting. Not just because of that whole guy in the red suit with horns thing but because it's rare to find a fictional character with horns who also has behaviors worth emulating.

And because we were 3 for 3 for good days at pretty school this week, I hoped that this wasn't a bad sign.

Since I had an older child at home to stay with HopeAnne, I was able to leave extra early for pretty school pick up. All of the children were sitting at the tables, busily coloring a counting book about flowers. Victor was, I hoped at least, around the corner, so I went to the one-way mirror to see if I could get a good view of him.

The view was perfect. Victor was seated (seated!) with his TVI* next to him and his TSS standing nearby. His TVI was helping him put stickers and pompoms on the flowers in his book and braille stickers over the numbers on the page. Victor was compliant and participating in the activity. Did I mention that he was seated? Every few minutes he would jump up, spin a time or two, but then would sit (sit!) back down and pick up right where he left off.  It was beautiful. I might have found my eyes leaking just a little.

His pretty school teacher came out into the hall and I expressed my joy at finding Victor seated (seated!) and participating. She echoed this sentiment and added more examples of how Victor is not only progressing but succeeding. This is so much more than I could have asked or imagined when we started the year.

And then it was time for Victor to meet me and take me to the office where he is to give me the report for the day.

"Okay, Victor, how was your day? How many times did you go to the office today?"

A big smile and then, "Zero!"

We are 4 for 4 for this week, folks. We've never been 4 for 4 before. Until this week we've never been 3 for 4 and most weeks we weren't even 2 for 4. 1 for 4 used to be something to be celebrated. Today we celebrated 4 for 4. 4 for 4!

Victor is in the right place with the right team so that he can be exactly what God promised those months before he was even born - victorious! God prepared this team for us long before we asked for a team, long before we even knew we needed a team.

Now to Him who is able to do immeasurably more than all we ask or imagine, 

according to His power that is at work within us, 

to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. Ephesians 3: 20 - 21

*A code for Victor's alphabet soup team:
TVI - Teacher of the Visually Impaired
TSS - Therapeutic Staff Support

Pumpkin explorations

One of Victor's favorite words is explore. It also happens to be one of his favorite activities. And exploring the car is probably only second to drumming. Drumming always trumps any other activity. But since you can drum while you explore the car, win-win!

We take advantage of his love for exploring so that he can learn as much as possible about his environment using the senses that do work. Or maybe that's why he loves exploring so much, since that is how we have introduced him to his environment. Either way, the other night was pumpkin exploration night. Pumpkin carving to the rest of us.

All day he talked about carving his pumpkin even though he had no idea what that meant. Since he had picked out his own pumpkin, however, he figured this must be something good.

What's inside?

Annnnnndddd...that's how Victor felt about the swime-y stuff inside

Listening to Isaac clean out the inside of his pumpkin

Okay, I'll help scoop but I will not touch that stuff again!

Exploring the shapes on the pumpkin face

He said he wanted hearts for eyes, a triangle for a nose, and a smiley face with 1 tooth for a mouth.

Then, after everyone else was finished, he modeled what he had observed. He found a "knife" in the drawer, made scooping sounds in the pumpkin, banged the knife-turned-spoon on the side of the bowl, and continued on.

Happy fall, everyone!

Endurance and active persistence

Therefore, since we are surrounded by so great a cloud of witnesses [who by faith have testified to the truth of God’s absolute faithfulness], stripping off every unnecessary weight and the sin which so easily and cleverly entangles us, let us run with endurance and active persistence the race that is set before us,

[looking away from all that will distract us and] focusing our eyes on Jesus, who is the Author and Perfecter of faith [the first incentive for our belief and the One who brings our faith to maturity], who for the joy [of accomplishing the goal] set before Him endured the cross, disregarding the shame, and sat down at the right hand of the throne of God [revealing His deity, His authority, and the completion of His work].

Hebrews 12: 1 - 2. Some days I have it. And some days I don't.

Diagnosis day

September 18, 2013. I sent the Good Doctor to the pediatric ophthalmologist with Victor that day. He called me on the way home,

"The doctor says Victor is completely blind."

I never did like that doctor but I'm not sure if it's him or his message.

But here we are, 3 years later.

That doctor didn't know the power of prayer because around 1 year of age he showed signs of light perception and a year later he held a book to his face and told me which one it was.

And then we learned that blindness was the least of his troubles.

So now we pray for breakthrough in behavioral issues. And while the day-in-and-day-out is wearying and looks like we've made no progress, we have.

When he chooses to to bang his foot rather than his head, we've made progress.

When he responds to someone's hello not with a yell but with a quiet and polite, "I really don't want to talk right now," we've made progress.

When he allows us to comfort him after a fall rather than hitting us and yelling, we've made progress.

When he says, "Yes, Mommy," and follows through with my request rather than defiance, we've made progress.

We are exceedingly thankful for the number of wonderful people who have come into our lives because of Victor. And on my good days, I'm thankful for the lessons I am learning through Victor's diagnosis. Love, grace, joy, patience, and compassion have all been cultivated in this journey as has empathy for others walking a similar journey. And if this is what it takes for me to become more like Jesus, then this is the path I will walk.

Happy Diagnosis Day, everyone!

Pretty School

Well, if you were looking for an update on Victor's first morning at pretty school, here it is...

He survived. And so did I (but barely). Team Victor was missing only his OT (and that was because we decided that we didn't need one more person in the room today).

Arrival was shaky. we decided to skip the putting the backpack on the hook part of the routine. Not happening.

And who was worried about whether or not he'd use the potty at preschool? (Me.) Within the first five minutes, everyone in the room knew that Victor was headed for the potty. Success. Publicly.

But it's not as if all of their eyes and ears weren't already on him because his entrance at the end of circle time was an entertaining one. There was going to be no Victor in that compliant circle-sitting group. And he let it be known by not just a little bit of yelling and head banging and floor rolling.

Free play found him throwing little colored glass beads (from the light table - no surprise that this is the first object that caught his eye) and swiping the whole basket of crayons right off the table (my apologies to the little girl from our church - and her parents - who saw the whole crayon episode and looked at me with horror). Oh, and sneaking a bit of play-doh down the hatch.

He told his TVI to shut up and when she told him that it hurts her heart when he says that, he whispered it. Maybe words can only hurt when they are spoken loudly?

Sensory and anxiety and frustration overload came at snack clean-up when he was a bit confused about where to put his cup (dish pan) and napkin (trash can). So, he and his behavioral specialist spent a few minutes in the cubbies (where Victor ended up) while Victor yelled and rolled and banged his head. Out in the main area, the rest of Team Victor decided that I would just take him home when he was done but after 7 minutes (yes, we counted), he sat up and nicely placed his things where they belonged and announced that he was going to join the rest of the children on the playground. So we did.

And there were some glimmers of hope.

After the throwing incident at the light table, Victor decided to play McDonald's with me. I was able to get him to play McDonald's with the other child and student teacher who were also there. The other little girl was a beautiful example of the graciousness of children; she didn't miss a beat and ordered herself some McDonald's chicken which Victor happily supplied to her.

He joined a few children at the housekeeping area. Of course he then picked up a pretend pot and banged it on the table. Then another child joined in. Who says Victor isn't a leader? They'll all be accomplished drummers by the end of the school year.

He voluntarily joined the line-up for pre-snack hand-washing, found an empty chair on his own, and sat down nicely for all of snack. At this point all of Team Victor was a bit misty-eyed.

And he had a lovely time on the playground.

On the way home, when there were a few tears shed (mine) he told me to calm down and take some deep breaths.

Funny, that's what I used to tell him in the NICU.

And tomorrow we get to do it all again.

Victorisms - Oh dear

He insisted on sleeping beside his bed at nap time. Not in, beside. 

It took a while, but he finally fell asleep.

And if it bothers you that he's still in a crib, then you can spend a few nights

with Victor and you'll soon see why it's much easier (and safer)

to keep him here until he finally (someday far away) figures

out that he can climb out himself.

Victor's TVI (Teacher of the Visually Impaired): Victor, I love your smile.
Victor: I love your bubble wrap.
********************
Eden made pancakes and gave one to Victor. He promptly stuck it up to his nose, inhaled deeply, and asked, "Do you smell it?".

********************
"Mom, come celebrate me."
********************
Victor, upon awakening from his nap: Wait for the Lord; be strong and take heart and wait for the Lord.
Me (after the initial shock of realizing he had memorized more of the prayer I pray over him in the morning): That's right. Thank you, Victor.
Victor: What does it mean?
Really, the 3 year old is asking me what this means?
********************
"I'm going to be Isaac when I get big."
********************
One of the issues with Victor's potty training has been the fact that when he does decide to use the potty on his own, the pants come off wherever and whenever the mood strikes. This is bothersome and awkward at home but obviously not acceptable for preschool. One day he made it from the bathroom to the dinner table bench before anyone could get the pants back on him. I caught him just in time as he attempted to climb onto the back of the bench, thereby exposing himself to the neighbors through the window. I asked him to please get down because we don't flash the neighbors. Now, whenever he climbs on the bench, he asks if he can flash the neighbors. Apparently, to him, flashing the neighbors means climbing on the bench. Great. I hope they don't have any benches at preschool.
********************
Once, after a potty success, he came to me carrying a new pair of underpants that he had found in his drawer. "Look, mom, I got pretty undies." (I think he has too many sisters.)

Victor is finally showing interest in his violin. The struggle has been to get the sensitively challenged child to hold the instrument under his chin; he doesn't want it to touch his face. So Isaac gave him a lesson this morning and as they were finishing up, Isaac used his own fingers to play Twinkle, Twinkle while he helped Victor move the bow. I praised Victor for "playing" Twinkle, Twinkle and he yelled, "No, I want to play Orange Blossom Special!" That one will take a little more practice, my dear.