So quiet

When Luca was born, he was a quiet boy. He was always taking the world in from his big blue eyes, and never asking for much.

I was always warned, “Oh, boys. They’re such a handful. They’re so boisterous, they’re so crazy!” But it never happened. He was always my relaxed, chill boy. Loved to snuggle. Was empathetic.

But when he entered kindergarten, it sort of defeated him in a way. He had always been shy, but this was different. He was struggling, but it seemed that I was the only one who saw it.

His teachers and basically everyone else brushed it off, stating he’s very immature. He’s the youngest one in the class. He’s a boy. Boys always develop later than girls. Blah blah blah. But no. I can read my kid. I saw in him similar struggles that I went through in school, but getting any information out of him was a struggle. He wouldn’t open up to me whatsoever, and, again, it was brushed off as, he’s young.

When April came around, I needed to sit down with his teacher. She gave me the same BS about how he’s immature and is just adapting to a new way of life. I then mentioned to her that I have dyslexia and I see him struggling as I had, and while she listened to me, she still brushed it off.

About a week later, I got a note from his teacher stating she wanted to meet with me again. That seeing Luca through new eyes, the eyes of just maybe I could be right, she’s witnessed some things that had her agreeing with me.

We met, and she agreed, but then Luca’s tonsils took priority and so the summer was spent having surgery and getting better.

When first grade began, I told his teacher right away to please keep an eye out for him. That he’s so quiet that he can easily be left behind. His teacher has been amazing. She kept up on him and let him move at his pace, but despite all of this, when the new year began, she sent an email saying that he had gotten increasingly worse in the matter of a few weeks and was there something she could do to help? He spent 75% of his day daydreaming, and when he was one on one with his teacher he would cry because he physically couldn’t focus on the work she was having him do. He would never cry in school before this. He was noticing it, too.

I immediately got him into his pediatrician and she said that it could totally be ADD, but she’s not going to blanket diagnose him, and referred us to a doctor who would administer neuropsych evaluation.

I know I’ve said this a million times, but the elementary school my kids go to is amazing. The principal stopped me when I was volunteering for an after school program and asked permission to give my number to the district’s social worker who can help guide me through the process, help with the stress. The social worker was amazing. She gave me a list of things that could also help him, one of them would be to see a behavioral optometrist.

We went to see Dr. Hans Lessmann, who you can google, is a very accomplished man. He is also very good at what he does. He ran Luca through a battery of tests, many of which were incredibly eye-opening. For example, in one test he had Luca draw a line down a piece of paper, and on the right side he had to start with the letter A and on the left side he went to B, so on and so forth until he got to Z. On the right side, all the letters that could be backwards – C, E, G, were backwards. When he was asked to copy a series of dots and lines just as he saw them, they were usually upside-down or on an odd angle.

He was diagnosed with Non-Malingering Syndrome or Streff Syndrome. It’s pretty amazing. Basically, his vision is 20/20, that is, until he’s under stress, and then his vision is 20/40. His eyes see, but his brain does not.  It was described to me that Luca is in a constant state of fight or flight. That he is always in tunnel vision. That he cannot see except for the one thing he’s focusing on because he’s so overwhelmed that he is just working for survival. Dr. Lessmann said he’s up a creek, with no paddle, but everyone is telling him to row anyhow.

When he gave the diagnosis I was elated and defeated all at the same time. Finally someone had believed me, but my poor kid was so stressed at the age of 6. I was heartbroken.

He began light and vision therapy and within three weeks, I started to see my Luca again. He was coming back. Where he had lost all empathy, because he couldn’t even care for himself, let alone about others, he was giving me hugs on his own again. When he used to freak out and yell about things, he now stops himself and asks me to work it out with him. He’s also focusing a little better in school.

It didn’t come easily. Not by a long shot. The light therapy has side effects of tantrums and major melt downs, and we had those. He would have full-blown attacks of …. I don’t even know what to call it. Anxiety? He would sit on the floor screaming and rocking and holding himself. You couldn’t touch him, you couldn’t reason with him, and it would last for what felt like an eternity. But I would grab him anyway and hold him tight and whisper in his ear that I’m here and I wasn’t letting go.

He told me, several hours after he’d calm, that he liked that.

As a mother, watching my kid go through this, it has been incredibly challenging. I’ve had to bite my tongue more times than I care to mention, and I’ve had to walk out of rooms to keep myself from saying something that I’d come to regret. I’d have to remind myself that he’s doing his very best, and right now he’s going though something rough.

But oh man it hasn’t been easy.

When Dr. Lessmann had Luca doing an activity in another room, he asked me, “If I could snap my fingers and make everything better, what would be the one thing you’d want to see improve for him?” I said, “His emotions. I want him to not be so sad and frustrated all of the time anymore.”

After Luca had finished his activity, he came into the room with us, and Dr. Lessmann asked him the same thing. He said, “I don’t want to be so sad anymore. And scared.”

He’s improving. He’s more aware. He’s more kind. He’s more Luca. It’s going to be a long journey, but to see him already feeling more confident and acting more ‘like a boy’ and being silly and rough and tumble…well I’d pay a million dollars for that.

 

 

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About Cassie

Two sisters from two misters. What could be more fun?

Posted on March 17, 2016, in Cassie. Bookmark the permalink. 1 Comment.

  1. Oh, that must be so hard for him and you all who love him! I am happy that you have such great support within the school and a great doc, and that you have a diagnosis, and especially that there is already progress after just a few weeks! I know that it is probably a very long time if you see your child suffer and go through a rough time, but I was just amazed that the therapy worked so fast. And I suppose it will get better with every week – at least I hope so!
    I keep my fingers crossed that Luca soon does not have to feel sad and scared anymore – so hard for a child to feel that way on a regular basis. He’s a tough little guy, that’s for sure!

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