Tag Archives: light perception

Was The Sandman Hiding In A Bottle Of Melatonin?

27 Feb

Taking ‘naps’ sounds so childish…I prefer to call them ‘horizontal life pauses.’- Unknown quotes

When Oli was 18 months old I crumbled under her terrorist acts of sleep deprivation and gave her a magical pill called melatonin. I had been hearing about this over-the-counter medication for months, but had been previously reluctant to try it. The only medicine I had given her before was Tylenol, Prevacid for her reflux and a low dose antibiotic to prevent kidney infections caused by her kidney reflux. I was scared to give my baby anything not approved by the FDA. Which like most supplements, it isn’t.

I was also apprehensive because I had read and heard mixed opinions about the use of it in children. Although no one came right out and said “If you give your child this medicine it will harm her.” I had read that its use was too new for studies on its possible long term implications to be available. So essentially I heard “If you give your child this it may harm her.” That was an enormous and terrifying maybe.

That was why it took me an entire year before agreeing to try it.

Eventually I came across articles like this:

“Studies of melatonin use in children have shown it could reduce the amount of time it takes to fall asleep and increase the duration of sleep in children with mental retardation, autism, psychiatric disorders, visual impairment, or epilepsy.”—-from cbsnews.com

At this point I didn’t know that she was autistic. She was too young for psychiatric disorders and did not have epilepsy yet. She was blind and could possibly have MR. That was enough for me to start looking more closely at reasons to try it.

(Did I mention that it had been a whole year since the elusive Sand Man had made regular house calls to Pahrump?)

imagesCA41DURJ

And I began to realize the very big importance of a very tiny gland that Oli just happened to be missing.

So I began researching articles like these: taken from Wikipedia

“Circadian rhythm

In humans, melatonin is produced by the pineal gland, a small endocrine gland[26] located in the center of the brain but outside the blood–brain barrier. The melatonin signal forms part of the system that regulates the sleep-wake cycle by chemically causing drowsiness and lowering the body temperature, but it is the central nervous system (specifically the suprachiasmatic nuclei, or SCN)[26] that controls the daily cycle in most components of the paracrine and endocrine systems[27][28] rather than the melatonin signal (as was once postulated).”

That was clincher for me. If she doesn’t have the gland that produces melatonin and she doesn’t have any light perception to help create a sleep-wake-cycle then how in the hell was she ever going to sleep without some kind of help?

Once that realization finally sunk in I jumped into my car and raced my stressed, sleep deprived, pajama clad butt to Walgreens. Like a woman on a mission I shoved aside little old ladies and received snooty stares from well rested patrons. Oblivious to the rest of the customers in the store I made me way to the supplement section and grabbed two bottles. My savior came in a little green bottle with a yellow lid.

I immediately encountered an unforeseen problem. There were two doses available at Walgreens. One that was 3mg and one that was 5mg. How much do you give an 18 month old? I had discussed trying Melatonin with her doctors, but we had never finalized the decision so we never talked about dosage. I took them both to the register feeling severely deflated. I wasn’t going to be able to try it tonight.

I paid for my purchase and climbed reluctantly back into my car.

Another long night was waiting for me…

Can You See Me? I’m Here In The Darkness. (Part 3)

24 Feb

As I concentrated on that feeling of smallness and aloneness, my husband nudges my shoulder propelling me out of my reflection.

“Hey Shannon? Have you tried shaking your head?”

“No.” I reply laughing at his enthusiasm for the experience.

“Try it. I’ve been doing it for the last 5 minutes.” He chuckles.

I start shaking my head back and forth, imitating Oli’s constant head movement.

“What’s it doing for you?” I ask Seth after a minute.

“I feel like I can hear the sounds around me better. I hear something different each time I turn my head.” He tells me. “What are you getting out of it?”

“Dizzy.” I respond. “I could only do it for a minute before I started feeling like I wanted to throw up.” I am a person who couldn’t even ride the Teacups at the county fair without wanting to throw up.

While I was sitting there my eye was continually drawn to a little red light on the ceiling. I’m guessing it was a smoke detector light or something like that. In the darkness I could orient myself to that light. Every once in a while another small light would be illuminated in the back of the room. I think it was from staff coming in and out and lifting a curtain.

Although I was WAY more secure sitting in my chair and not walking around in the dark, I was immediately drawn to any kind of change in the blackness. When I would see that little bit of light, a tiny tiny minute change in the texture of the dark, my body seemed to be able to orient itself to it. I instantly knew where I was in space. I didn’t feel so lost. I began to realize why it has taken Oli so long to be aware of where her body is. I began to recognize the HUGE importance of teaching her orientation with regards to herself and her environment because she doesn’t have any kind of light perception.

All of a sudden the lessons that I had been learning and teaching her made absolute and complete real sense to me. A light went off and I felt it. I felt why it was so important.

“It’s now time for the question and answer part of our night here at the Blind Café. The blind waiters and waitresses are inviting you to ask questions about what it is like living as a blind person.” The man who made this whole night possible, Rosh Rocheleau, stands up and introduces them.

“Everyone who has a question raise their hand.” This statement is met with a nervous, awkward silence and then followed by laughter as the waiters begin to laugh. Oh? It’s okay to have a sense of humor about this whole thing?

I think sometimes people are so insecure and uncomfortable around people who are different from them that they forget that they are just like everyone else. They are smart, funny, happy, real people. Except for the fact that they cannot see, they are just the same as you. The blind wait staff made us feel like it was okay. It was okay to ask the typical questions about blindness. They were so comfortable and confident in themselves, they tolerated the ridiculous questions and were happy to dispel many myths. I have to say, I was slightly annoyed at some people’s stereotypical questions about blindness. However, I am not afraid to admit that I too, have had similar questions when I first learned about blindness.

People asked questions like “Do you see in your dreams?”

Answer: “No.” People who have been blind since birth don’t see in their dreams because their brains just don’t work like that. They have never seen anything so their subconscious has no reference to input visual pictures into their dreams. They dream in smell, sound, and touch.

“Are your other senses super enhanced? Did they become heightened?”

Answer: “No. We don’t develop super powers like Superman.” A blind person’s hearing and sense of smell are the same as everyone else’s. If measured I’m sure it would be at a normal, appropriate level. Blind people just learn to use their senses better than you or I. They pay better attention to things that we generally don’t because we experience our world about 60% of the time through vision.

“Do you hate it when people say things like ‘Did you listen to American Idol last night’?”

Answer: “Yes. Absolutely. I try to be nice about it and if someone says ‘Did you listen to ….’ I respond, ‘Yes. I watched….last night.’ You don’t have to adapt your vocabulary just because I can’t see. I still use words like: see, look, watch….because they are acceptable terms in our language.”

“What is another one of your pet peeves that people do to blind people?”

Answer: “I hate it when I go out to a bar or restaurant with my friends and the bartender asks my friend what I want. They don’t ask me. They’ll say things like ‘What does he want?’ You can talk to me. Hello! I’m standing right here! I also hate it when I give them my money and they hand my change back to my friend. They never hand it to me. Ummm….it’s MY money. You can give it directly to me. Sometimes people treat me like I’m a child or incapacitated and I hate that.”

“What is a relationship like with another blind person vs. a sighted person?”

Answer: “Really, it’s the same. There is just a much bigger learning curve and much more teaching involved in dating a sighted person.”

(Check back again. I STILL have more to tell you. I could probably write a whole book on this experience:)

thecrumbdiaries

Logan is challenged but not limited, and he is living his life like a boss. I am just lucky enough to be along for the ride.

Mommy Got Her Groove Back

How a new mom, and wife does parenting and daily life.

Lessons from my daughter

Although all doctors agreed she would do nothing.....

I'm fine, but my Mommy has issues!

Raising a daughter with special needs.

Living on the Spectrum: The Connor Chronicles

Our family's adventures in the world of ADHD and Autism.

Parenting And Stuff

Not a "how to be a great parent" blog

don of all trades

Master of none...

The Third Glance

A peek into my (Autistic) mind

One Stitch At A Time

Making my way back in time.

Disability Watchdog

Exposing Injustices for Vulnerable People

My thoughts on a page.

Living, Laughing, Loving, Loathing.

It is Well...with my Soul

Sure, my hands are full. So is my HEART!

Chopping Potatoes

And other metaphors for motherhood

This is the Corner We Pee In

Bulletins from the Parenting Trenches...

clotildajamcracker

The wacky stories of a crazy lady.

This is the place

visiting places where writers were born, lived, loved & are buried.

motherslittlesteps.co.uk/

Motherhood and Country-Coastal Living

My Dance in the Rain

The journey of my life, my path to redefine myself and a special little girl with Cri du Chat Syndrome and Primary Ciliary Dyskenisia who changed it all.

Prego and the Loon

Pregnant and Dealing With Domestic Violence

%d bloggers like this: