non-verbal autism – Vicki Neely

To Joshua on your 15th Birthday

Dear Josh,

I can’t believe you are 15. When you were born- even before- I couldn’t think past the first few years. I always pictured you as a little boy, never thinking about teenage or adult years.

So much focus in our world is on young children. It almost seems like moms stop being moms when kids reach a certain age but we know that’s not true. Kids need their moms at all ages.

But especially you. You still really need me.

It makes me happy and sad all at the same time. That’s called bittersweet and I think it describes life so well.

You know I thank God for you every single day. I tell you how much I love you and you see my eyes glisten with tears when you look at me with your gorgeous almond pools of blue.

I mostly cry because I’m overwhelmed with the joy that is you.

But I have a confession- I sometimes get a little sad when I think about what you might be doing. I used to let these thoughts consume me. Now I wonder if you wish things were different or if you miss doing certain things.

Sometimes I’m afraid to express any sadness or question anything will let all those who think you aren’t perfect just the way you are be justified in their thinking.

You were born perfect as much as your brothers and sister and as perfect as any other child.

You are unique and exquisite. Fearfully and wonderfully made.

But sometimes I go there- to the place of “what if”…

Take your birthday. You can’t tell me what you want for presents or what you want to do.

Birthdays are different for you. You don’t talk about what you want to do a year in advance. You don’t ask for a party or request your favorite meal or even have a say in what kind of cake you get.

Would you want to have a party, or just some friends over to hang out and play video games? Would you even like video games? Would you want to go to a movie? Out to dinner? You can’t tell me your favorite resturant. But I’d love to know.

Sometimes I picture you in the youth group. You would be raising money to go on a missions trip. You might even be going with your big brother.

I’d be “griping” about the Mother’s Day Bake Sale and how it’s not a relaxing Mother’s Day for me and we’d all laugh because it’s tradition and we would get in the kitchen all together and have fun.

Would you want to go to Verge Camp? I sometimes picture you sleeping on the bus and playing pranks and worshipping with thousands of teenagers and eating junk food and making silly faces at the iPhone pointed at you so I can see you on Facebook and know that you’re having a blast.

We would have had the “talk”. You may or may not be girl-crazy and you may or may not ever tell me about your crushes.

Instead…

I pack a pull-up in my purse (just in case), tie your shoes and look at the tag velcroed in the laces that reads: “I have autism. I am non-verbal.”

Your life is full of “special” conditions- special needs trusts and guradianships and IEP’s and medical issues and hundreds of things that complicate already difficult to navigate waters.

But in your 15 years, whether you know it or ever will realize it, you have changed my soul more than any typical teenager ever could. You have impacted lives without saying a word well beyond what most do in a lifetime.

Your smile is so genuine and pure, I know that you hold the secret of joy.

Contentment comes effortlessly and while I struggle against the worldly and unimportant, you are satisfied.

I feel lonely for you sometimes. You don’t have friends in the sense your brothers and sisters do. But I’m grateful that they let you hang out in the middle of them, and you laugh and put your hand on one of them to let them know, “Hey, I’m here. Thank you for letting me join in.”

Maybe if you could tell me if any of the things I wish for are your wishes. Maybe it’s my selfishness that wants these things for you that you care nothing about.

Once your Mamaw asked if I thought you knew you were different. I honestly didn’t know then.

But now- I think I know and I think you do.

Does it bother you and will I ever know?

But today, these questions can be left unanswered and I celebrate you, my precious young man who lives his beautiful life simply.

I am immensely proud of you. You, Joshua Neely, change attitudes and hearts. I pray God gives you the desires of yours because I know no one more genuine and deserving as you.

I don’t know if you can or will ever fully comprehend any of this. I guess I really don’t need to know if you do because God knows and He always knows best. What I’m sure of is that I am honored that He chose me to be your mom.

Happy Birthday. I love you.

Eight Months

The year-in-the-making, dreaded day happened exactly eight months ago today.

We’re on the other side. Life is back to “normal”. As normal as it gets for us, anyway.

The six-month follow-up appointment is well behind us. Our surgeon who guided us through for over a year has moved and it all seems a distant memory and like yesterday.

Series of X-rays to monitor progression come down to these before and after pictures of Joshua’s back.

Two rods inserted to correct a just-shy of 60-degree curvature.

Surgery is generally recommended when the curve is around 50 degrees. Josh’s was was progressing rapidly – around five to ten degrees every six months – an indication that it would only continue to worsen.

Such a curvature would most likely cause pain and could press on his lungs, although it may have already been happening.

Such is life with a non-verbal kid who gets frequent lung infections and severe reflux, who acts out aggressively when in pain, creating a constant guessing game of what causes what and what how to fix it.

This severe reflux caused extreme esophageal inflammation and a stricture which caused him to regurgitate his food. He underwent three endoscopic surgeries, medication and nutritional counseling. He had to gain weight and strength. We had to wait for his esophagus had to heal.

So over a year later from when he was originally scheduled to have the surgery, my husband and I once again turned our boy over to a gracious God’s care and a capable surgeon’s hands.

I would later question the decision.

The surgery went as well as it could have – except for a few moments of slight terror when the surgeon said he’d be finished then didn’t get to us until quite a bit later. While we were waiting Jerry said, “I hope this doesn’t mean there are any complications.”

We breathed again when the doctor gave us good news of successful surgery and I quickly forgot my husband’s words.

I reluctantly went home that night leaving him with his daddy and the amazing PICU staff, exhausted but relieved.
Until I received a call at 6:30 from my husband saying he developed fluid on his lung. I walked into a room full of nurses and staff and my son’s body protruded with tubes.

Bi-pap machines and GI tubes, catheters (one pulled out by his own feet), IV’s and PICC lines, soft restraints. Maintaining the balance of enough sedation to keep him still and out of pain vs. not too much for his blood pressure and O2 levels to go too low.

Watching lines and numbers on monitors and listening for beeps and bleeps became a twisted sort of game

My sweet sister-in-law didn’t want me to post pictures of him while he was in the hospital. I really didn’t want to either. But I took a pictures and texted them to her and others.

When Josh had open heart surgery as a baby, there was no such thing as Instagram or Facebook to instantly share every moment of life like there is today.

But even then, Jerry didn’t want pictures of him with all the tubes and how frail he looked. Back then, I wasn’t able to update like I do now and I wonder if that is better. Yet, I wish I had more pictures from then to look back on and realize the fragility of our humanness.

Looking back reminds me of how far we’ve come and that “this too shall pass” although sometimes things don’t pass how we anticipate or how we want.

The “normal” hospital stay of three to five days days stretched to twelve with most spent in the PICU. Jerry had to go back to work so we took shifts- I took days and he stayed nights.

I could set a watch by the time I began to get texts- precious friends who messaged, called, and visited.I felt prayers prayed from far off, and in that room.

I cried and prayed silently facing the wall as my sweet boy had tubes pushed in him and needles threaded through his veins. I watched his face plead with mine as he tried to lift his hands, restrained so he wouldn’t pull the tubes out.

He broke my heart.

One day, I had to leave his room which they inserted a PICC line to administer meds, as his veins were all collapsed from so many IV’s. I went out to the veranda outside the PICU.

The warmth of the sun was welcoming, thawing the chill deep in my bones.”Why did we do this God? Why are we putting him through all of this? Is it worth it?”

The guilt plagued and questions gnawed.

But there was no turning back. I couldn’t let my mind go to the place of something happening to him and it would be our doing.

I knew God had him, but I really didn’t know how much.

One one day much later -as in a couple of weeks ago – I asked my good friend who is a NICU nurse at Wolsfon, when the doctors let you I know when it’s “bad”.

She said they don’t really say much until it’s really bad. And then I asked her, “How was Josh, really?

And she said, “The day after when I came to see him, I was worried.”

I wonder with Josh, how many times God just protects my mama’s heart – how many times He keeps me from “going there” because I generally don’t. I don’t know why- maybe I am naive and it hits me later.

As we face another round of dental procedures done at the hospital in the next couple of months, I remember a recent conversation about the risk of anytime one goes under anesthesia.

Josh has been under more times than I can count off-hand. I’ve said before all this doesn’t get easier, but it does get familiar.

But should it?

I think I need to be be more concerned. More worried. If I’m honest, I feel guilty when I have peace. Resting feels wrong.

I’ve questioned myself over why we didn’t address Josh’s stomach issues earlier, chalking it up to stress over a new school, berated myself for not being as diligent about oral hygiene so that he doesn’t have to have all these dental procedures under anesthesia, the fact that I put my child “at risk” time and again.

One day during out hospital stay, one of the nurses who had worked for an orthopedic doctor previously asked if we wanted to know exactly what the surgery entailed. It was much more evasive than I imagined. At the same time, I was awestruck at how God designed out bodies to heal and regenerate.

Why the surgeon didn’t go more in-depth, I don’t know. Maybe because my husband already had to leave just hearing the basics If I knew everything, I may have run out screaming and saying, “No way!!”.

Should I have asked even more questions?

Am I not the diligent super-special-needs mom I should be?

I want to be the lionness-mom, but sometimes feel like the sheep who just trusts the doctors’ opinions and heed their advice.

I never feel like I do enough. I feel like I don’t pray enough, keep up enough, participate enough.

I feel like I don’t believe enough for things others think I should believe for.

Expectation is often exhausting.

But finally, a smile.

And now Josh is back in school and doing all his normal Josh-things.

And we are going through different trial now. Looking back on all of it reminds me that there is the other side of the mountain that stands massive and seems immovable..

I know the mercy of my Father. But I struggle because I know many whose outcome was not the one prayed for. Is God still faithful?

We know He is because He cannot lie, but my fleshy feelings want to whine and throw a tantrum and yell, “It’s not fair!!!”

Why do some children go through a lifetime in a few short years? Why do some have to endure so much they don’t understand and yet can’t tell anyone how much it hurts or how scared they are or ask, “Why are they doing this to me?”

I don’t always need to know, but I always have to trust.

Finding joy in the journey…

The Loudest Silence

This fell out of my Bible the other morning. One of my favorite pictures of my boy. One that just seems to capture all that he is.

A few years ago, Joshua had surgery to have impacted ear wax extracted, ear tubes inserted as well as having his tonsils and adenoids removed.

This was the first time my husband stayed with him overnight at the hospital. We decided it best that he stay, since Josh had been going through behavior issues and had become increasingly harder for me to handle. Looking back, I realize I had never considered when he was an infant anything long-term. I blocked any frightening future and only considered the right-then.

My quiet time with the Lord the next morning consisted of daily Bible reading. Determined to read the Bible in a year, I followed the plan, often falling behind.

But that day – in black and white was my word from God.

I wrote it on a post-it note and put it on the back of the picture.

Because Joshua’s ears were just cleaned and cleared and opened by little tubes, now his tongue would be loose and he would speak plainly.

So specific in what I had always hoped for.

When Joshua was little, I thought we could have enough speech therapy so he wouldn’t sound like he had Down syndrome. I used to think people with DS sounded “deaf” and my pride took over as I told myself that my child would sound “normal.”

I shudder as I type this.

If I read this from someone else I would likely be angry and offended because my perspective has changed so greatly. I also how shallow and selfish I can be.

But confession is cleansing and I confess I how prideful and arrogant I’ve been.

Pride is a dangerous thing. God opposes the proud. I am so un- proud of my pride and ashamed of my entitlement.

I’ve laid bare, pride stripped and feeling forgotten. I no longer care about plain. I just want words. And feel like that is selfish too.

I’ve heard that words aren’t always needed and I have myself said that Joshua has changed people without ever saying one.

Some say this is how God intends for him to be because this is how He made him.

So the LORD said to him, “Who has made man’s mouth? Or who makes the mute, the deaf, the seeing, or the blind? Have not I, the LORD? (Exodus 4:11)

I have been told I should be grateful in all that he can do. He has made amazing strides and has given us glimpses into things he knows that we never thought he did.

But Joshua does things that we don’t understand and he can’t make us understand. Some of them are potential harmful to himself and to us. Right this very day we have a doctor’s appointment to seek answers for an issue that has been going on way too long and is taking its toll on him and our family.

Just two words would give us a starting point. “Josh hurt,” or “Josh sick.”

Or, “Me sad.”

Actually one word would suffice. “Mad”.

Anything to know what he is feeling and why he does the unexplainable.

He has therapy to lessen his frustration by increasing his communication and he has made great strides. Many times, we know exactly what he wants.

The other times..

I know – sometimes words are not needed.

But sometimes I’m selfish.

Some parents of non-verbal kids have said they have a secret language. I get that. I can “read” Joshua pretty well and he can communicate his basic needs of hunger or thirst by taking our hand and pulling or simply grabbing what he wants.

But there is something about words.

As a writer, I love words- their sounds and the way they paint a picture in one’s imagination that is so intimate to the one reading. Or listening.

When I talk to people with Down syndrome and am both amazed and envious.

For years I’ve ached to hear, “I love you Mommy.” I waited to hear his cute phrases and word mix-ups and all those funny things that I have written down from my other children.

Joshua’s page is blank.

My mama’s heart still longs to hear his voice, though now it is more of a man’s than a boy’s. And that leaves me feeling a bit cheated.

But really, I want it more for him than for me, so that he can express himself in more than grunts and limited signs.

I remember a friend years ago describing a special-needs girl, saying that she couldn’t talk and made “retarded sounds.”

I know the sound. I live with that sound. It resonates through the rooms and blends in the walls.

I’ve been asked if it gets on my nerves and if I’m honest, I would say yes, sometimes.

But I am afraid to be honest because the sound-maker was almost taken from me. The sound means that he is here with me and my gratitude at God’s grace leaves me with a sense that I shouldn’t complain.

But my humanness longs for words he can’t form no matter how hard he tries. My soul cries silently while I smile at him as he pushes out a sound that makes no sense.

I can’t lean to my own understanding because I don’t know how or even when autism took over and stole his voice.

And the point in which I no longer cared that he might sound as if he had Down syndrome.

It is no longer the enemy.

But I’m broken and helpless over his frustration.

I hear mommies say to young children, “Use your words,” and hope they realize how blessed they are to say that.

I listen to animated and greatly detailed stories from my youngest with eagerness because I don’t take for granted that he is able to express himself so brilliantly.

I am a talker and a listener and love teenagers in the kitchen telling stories and laughing and often watch Josh take it all in and wonder if he knows he’s missing out.

Even as I type, I hear the sounds of silent. The noises of the non-verbal.

In a conversation with my mother-in-law, I mentioned that Josh listens to this counting song over and over and that if he could talk, I bet he could count.

I bet he can read, as he recognizes words on his movies and can “match” them to their cases or knows if that movie is playing.

So could he read? Isn’t reading the recognition of letters, really? Letters arranged so that they take on meaning in their form. But he can’t “read” because he can’t speak.

So why can’t he speak?

She asked if he had speech therapy. yes, but only to the extent of other forms of communication. One can’t work on speech that isn’t there.

And as we talked, I started saying words I had never thought through, yet seemed to make perfect sense – to me, at least.

Signs with Joshua must first be done hand-over-hand, as with most everything we introduce to him. He generally does not imitate. Seemingly endless repetition leads to his mastering the task and eventually, he learns a sign will get him what he wants.

Neurotypical children learn imitation quickly. As a baby learns to talk, he babbles and soon imitates what he hears – words. A parent tells the child to say a word, and eventually will, forming vocabulary.

I realize there is really no way to “show” Joshua how to talk.

He makes noise, so his voice “works” but he cannot form words.

I don’t know why he doesn’t imitate sounds – is it because of cognitive delays, or autism or because he doesn’t know how to form the words. I can’t jump in his throat and “hand-over-hand” a word physically like I can for signs or tasks.

And as I explained this, she merely said, “That is a shame.” And I guess it is, because I cannot find anyone who knows how to make this happen and I don’t either.

But instead of wondering why, or asking if I caused this or even what can I do, I look to Jesus, Who Himself said, “It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.”

God isn’t finished with Joshua. Or me. Or any of us.

Through Joshua, I’ve learned to not for granted things that come so easy for most of us. I have learned to rejoice in the simple and am in awe of the mundane because it is difficult for many.

The works of God are displayed in him whether he talks or not. But I don’t think He wants me to stop asking. We are to seek and we are to pray and we are to believe.

In the meantime, His grace is sufficient.

Until that day…