AbleBodies

Parenting Issues and the Vision Impaired

Parenting probably is the toughest job a person undertakes. Myriad of experiences occur, emotions vary from joy and happiness to heartache and worry, and a parent just hopes he or she does and says the proper things to shape a child to become a productive individual.

Parenting is a tough road and presents itself with its own challenges. Now, throw into the mix a parent with a vision disability and those challenges multiply.
When Dawn and I first discussed adopting in 2008, I never gave much thought to the affect my limited vision might play in being a parent. I’ve lived with my vision issues since age fifteen and I’ve managed to survive and flourish in life with everything from earning a master’s degree to being a reporter for several newspapers.
Even though mentally I worked on adopting kids, I never gave much thought to the disability element. I figured since everything else up to that point was achieved, why not too achieving becoming a successful parent despite my disability. Deep down I didn’t want it to be a problem.

Our three kids came to live with us on April 1, 2010 and it was an adjustment for me as it was for them. Suddenly they are with two strangers who in time will adopt them. and we did. On Jan. 20, 2011, Dawn and I adopted our kids. That was one of the greatest moments of my life.

It’s going on five years that the kids have lived with us. And like any other family, we’ve experienced our fair share of ups and downs—mostly ups, though.
So you may ask, has your vision hindered you as a parent?

Yes, at times, especially when it comes to health issues. And those are the most important.

In late 2013 one of our kids was diagnosed with epilepsy after experiencing a series of grand mal seizures. Seeing a child undergo a seizure is frightening—the body convulsing and limbs flailing. Your first thought is “Oh my God, my child is dying right in front of my eyes.”

For me, while I see the big picture, the small things escape me due to my limited vision. A flurry of questions become my anxiety: Are eyes rolling back in their sockets? Any bruising from a fall? Is it a full-body seizure (a 911-operator question)? Any facial expressions changes? Is the child breathing? as the head bumped or struck during the fall? I must approach the situation in a different manner that includes more touching and listening rather than seeing, which tends to be the manner most people assess a situation.

While coping with one child’s epilepsy, due to trauma, another of our kids is hording food. We’ve found lots of wrappers under the couch cushions and containers behind said couch.

Though the issue is more prevalent now, it is something that has occurred over the years. On many occasions I’ve been in the same room where that child has sneaked some “goodies” and is slowly eating them. I see nothing and the deed is found out only after the fact.

Just the other night I asked Dawn to check in on our child to make sure everything was fine. My words to Dawn were, “Can you check, you can see things I can’t.” That seems to be my go-to phrase. And, what did Dawn encounter? A package of saltines by the bed and a mouthful of crackers. It’s always easier to sneak food when I’m the one around.
And the list goes on.

So is life challenging for a parent with a vision disability? Yep. But I deal with it. I love my kids and try to do best by them and not let my disability get in the way. But when my disability becomes an issue for me, I deal with it the way I’ve dealt with it in the past—work with it and make it work.

- Roel -

Trauma

“Trauma”

 

It hurts and destroys,

Wheedling into the mind,

Burrowing into the deepest

Crevices and hiding

Until it explodes into

The present,

The true damage is seen,

The effects bursting forth

In a plethora of manners,

Anger, regression, isolation,

All stemming from fear,

Where it all began.

 

A loving child, innocent,

Turned and twisted,

Molded and shaped,

The resulting model,

Emotions disfigured,

Processes damaged,

Love and trust seen

Through shifty eyes,

Both strangers,

Their touch foreign.

 

Wicked, wicked thing,

Deserving of no name,

How I despise you,

How I wish to stifle

Your presence and

Spit upon your existence.

Be gone!

Damager of children.

- Roel - 

Thankful Father

I am thankful for so much in life, from my health and family to my job and friends. But there is one person I am thankful for that I want to focus on: my father, Roberto Garcia.

Below is a list of reasons why I am thankful for my dad.

1. His generosity toward others, putting others before himself.
2. His simple way of living yet rich in family.
3. His quiet nature and ability to listen to others.
4. His passion for something: ranching.
5. His work ethic.
6. His gentle manner.
7. His leading by example.
8. His patience.
9. His time with me.
10. His life.

On Wednesday, Nov. 7, 2007, my dad’s life ended after an almost three-year struggle with colon cancer. His loss created such a void in my life. Gone was the man who was a quiet force, who I respected as a man and more as a father. While our time together was cut short, I treasure those thirty-seven years of memories and love. I am thankful for my dad.

- Roel -

I Want To Hold Your Hand

You’re in a hospital room, supporting the soon-to-be parents of a newborn baby boy. The husband is holding the hand of his wife, their hand being held by the nurse: a support train. The others in the room take note, latching their hands together: a tangled mess hoping to ease tensions.

You’re walking, alone, getting errands done. On a mission, you’re hoping to accomplish your errands in a timely manner. Then, you see it: a young male and female holding hands. You’ve never seen them before, and figure you won’t see them again, so you continue onward. They looked innocent enough.

The reasons for holding hands run on: showing support, to calm, to be affectionate, offering safety and security, showing unity, etc. The two examples I provided are just the tip of the iceberg, yet show the range of situations holding hands comes in handy. There is also a deeper purpose of holding hands, known sometimes to those only partaking in the act. These purposes range from internal motives to eliminating or minimizing external judgements, and everything between. Then again, this could be me being over analytical. Similar to snowflakes, one could say that no two hand-holdings are exactly alike. Although there are variables going into the actual holding of the hands, I believe there is one similarity among them all: those taking part make a conscious decision to weave their hands together. With this holding true, the people involved want to be exactly where they are, while showing a sense of togetherness and peace. Maybe I’m the only one who feels a little giddy inside seeing others holding hands, as it provides me a sense of hope. When have you seen people holding hands? While seeing others holding hands, how do you feel? When you hold hands, how do you feel? I think it’s safe to say that when you’re holding hands, you feel safer than before. It takes a while sometimes, but your spirits are raised, knowing that someone is there, holding onto your life, with you.

You’re on a plane, sitting next to your loved one. He doesn’t like flying, and is extremely anxious about flying (stupid motion sickness). You reassure him he can squeeze your hand as hard as needed. Actually, there isn’t a point in saying this, as you anticipate it happening anyway: one of the perks of being in a relationship of 6+ years. As the safety rules are demonstrated and the plane starts moving, we both put a piece of gum in our mouth, hoping our ears won’t pop. The engines rev. My hand is even more at the ready, fully extended. He rests his head back, closes his eyes, and latches on. I look over to see he’s okay, and he is. I won’t close my eyes until we’re at cruising altitude. The wheels are up now, and his squeeze is getting tighter: anxiety. I gently rub his arm with my free hand, checking his pulse, and this relaxes him. We reach cruising altitude, and his gorgeous green eyes open. He’s fine. I’m fine. Everything is fine. We continue holding hands.

This happened during takeoff and landing, from Grand Rapids to Atlanta, then from Atlanta to Tampa Bay, and then on the way back. The least I could do was offer my hand for him, offering: safety, security, familiarity, a peace of mind, affection, and love. Such a simple gesture, yet signifying so much more.

 

- Brandon

A Road To Acceptance: In My Corner

Even though I felt alone and hopeless during my struggles, various resources were brought to my attention. I am human, and I still sometimes feel alone; the difference between then and now is I am 100% hopeful and I use my resources to my advantage.

The Trevor Project- This is the leading national organization in providing crisis intervention and suicide prevention in LGBTQ youth.  They have trained staff who will talk to you and remind you that your life is important and that you’re not alone.
www.thetrevorproject.com

Human Rights Campaign- The largest LGBTQ civil rights organization nationwide. This organization has an unlimited number of resources available to anyone. Their mission is to ensure that everyone is ensured of basic equal rights, and can be open and honest and safe at home, work and the community.
www.hrc.org.

To Write Love On Her Arms- A non-profit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury, and suicide. This organization exists to encourage, inform, inspire, and also to invest directly into treatment and recovery.
www.twloha.com

Anxiety and Depression Association of America- Their mission is to promote the prevention, treatment, and cure of anxiety, OCD, PTSD, depression, and related disorders through education, practice, and research.
www.adaa.org

The people in my corner- Without a doubt, these are the people who kept me grounded, and continue to do so. Without running the risk of leaving someone out, I constantly remind those who care about me that I wouldn’t be here without them. It’s in my nature to sometimes feel like a marionette, as I am constantly observing. The difference now is I pull most of the strings.

Collectively, these groups provided me with motivation, hope, inspiration, support, and knowledge that I am important. The world can be a dark and scary road to travel alone. With my mind in the right place, a strong supporting cast, and a plethora of resources available, I was seeing the light at the end of the tunnel.

You are never alone. You are never hopeless. Despite feelings, emotions, and people telling you’re not good enough, that you’re hopeless and alone, know that you’re not. Be bigger and better than your doubters and see the light with me.                                                                                                                     

 

Some of the friends I made during my sophomore year at GVSU. We engaged in our fair share of shenanigans.

         

GVSU Dodgeball after winning their second consecutive National Championship! The practices, games, travel, and camaraderie would become a big part of my routine.

 

I got my degree in Creative Writing and I couldn't be more excited! It's even better I got to celebrate with great company!        

                            

Some of the wristbands from my hospitalizations. Sometimes they are difficult to look at because of the times they remind me of. They also attest to my hope, courage, determination, and strength.

    

During my hospitalizations, there was a schedule patients had to follow; I loved being on a schedule. This is a collage I made during one of those stays. Every morning, I look at it to remind myself I can be Superman.

We're singin' in the imaginary rain! This was taken during sophomore year, after we ate. Despite all the changes I have been through, Luke has always been there to offer his full support.

A Road To Acceptance: Establishing Normal

I went through a roller coaster of emotions and opportunities the next four years. You could say many of my struggles were the same as other young adults: self-discovery, purpose, interests, and switching majors. I knew I wasn’t the only one battling anxiety, nerves, stress, lack of focus, doubt, confidence, and sexual identity.  My doctors provided me with ways to counter these negative feelings, along with many valuable lessons. Among the most important lessons was my battle being life long, and learning how to throw counter punches. Having people in my corner made my fight much more manageable. Apart from offering support, advice, and encouragement, they picked me up when I was down and out. There were plenty of times when I was down for the count, and didn’t think I could drag myself to my feet. Those in my corner wouldn’t let me stay down:

- Being hospitalized multiple times, for various reasons
- Staying at a mental institution
- Struggling with the meaning of life
- Suicidal thoughts and actions
- A seizure, knocking me unconscious
- Not being able to drive my car for 6 months
- Multiple car accidents, some resulting in trauma

I felt I was making friends with the medical staff for all the wrong reasons. Apart from going to my check-ups and scheduled appointments, these hospitalizations were the result of me being an out of control ball of emotions, experiencing severe depression. Most of the time, I knew I was doing wrong, but was unable to be stronger than my mind. The only way to keep me safe was keeping me away from others, in a cage. These visits served as reminders about my lifelong fight. Not being able to drive for 6 months was a result of my seizure, and increased my dependency on others, more so than usual. Not included are the many times I agitated my loved ones, the few people who were in my corner, ready and willing to help me. Despite this, every time I looked behind me, there they were; I will never know how to repay them. How did I manage to drag myself up? The company I was able to spend my collegiate years with, and these achievements:

- Getting a job as an Intramural Official, and keeping it through Graduation
- Joining the Club Dodgeball team, eventually becoming back-to-back-to back National Champions
- Joining an on-campus Depression Group
- Sharing my first kiss with Luke
- Meeting new friends, who accepted my struggles, and who helped guide me
- Coming out to my mother. Surprise! She already knew and loved me the same
- Accepting I’m gay
- Asking Luke to be my boyfriend. He said yes!
- Receiving my Bachelors Degree in Creative Writing
- Going to my doctors when I felt “different”

The camaraderie I formed with each of my circles of friends made me feel welcome, loved, and appreciated. It was a night and day of difference between this time period and my freshman year.  A large part of me accepting my identity was coming to grips with being gay. I knew I felt differently about boys my whole life, but sexual identity isn’t simply about rules of attraction. I was ashamed and embarrassed to share with Luke; I told him through a silly game. Once I finally accepted being gay, I had nothing more to hide: I had accepted my mental health illnesses and was completely honest with myself. I use my past as a reminder that it always gets better. I use my past to remind me that my wings get tattered, but I still know how to fly.

A Road To Acceptance: Fighting Forward

My freshman year of college did it’s best to break me, but my ever present determination wouldn’t allow me to shatter. The silver lining during my freshman year was becoming aware of recurring symptoms I had my whole life. First and foremost: I was, and still am, a person of strict routine. If my routine breaks, my equilibrium becomes unbalanced: riding a bike without a helmet. Additionally, my focus and concentration lacked, which I attributed to lessons being boring; this happens when taking General Education classes. I wasn’t yet able to give myself credit for making it out of my freshman year alive.

Fortunately, I had a check-up with my doctor shortly after school ended. When she asked me how I was feeling, I decided to stop hiding. Despite the numbers saying I was normal, I felt anything but. I told her the symptoms I’d been feeling. I told her I needed help before something I regret happens. I finally took ownership of my health, and my mindset took a 180 degree turn. She set up appointments with doctors who would become lifesavers.

Prior to meeting my Nurse Practioner, I took a series of tests to help diagnose me. My legs jittered as I anxiously waited for my name to be called. My mother kept asking me if I was okay, only raising my nerves. My name was finally called, and I walked as confidently as I could towards the door. Thankfully, the NP was very welcoming. After telling her about myself, she told me my results: Generalized Anxiety Disorder, A.D.D., and Bipolar. Hearing them aloud brought a sense of failure, but something absent before: hope. The words meant nothing because it changed nothing, yet it changed everything. I’d been living with the symptoms, but was too afraid to seek care. My NP reassured me I would be taken care of, and prescribed a low dosage of medications to begin balancing chemicals in my body. I took them as I was instructed. This became a big part of my morning and night routine for years to come.

I walked into the same waiting room the next day, to see my new Psychologist. I was still nervous, despite the familiar setting. I knew I had to be open and honest, otherwise he wouldn’t be able to help me. I felt it was a recording of the day before. He asked a question, waited for my response, and jotted down what I said; my every move was being examined. I was doing my best to answer questions, but there wasn’t depth to the answers. The trust wasn’t yet established. I needed to provide more than basic answers to fully grasp the gravity of what I was living with.

Over the next 4 years, I saw the same NP and the same Psychologist; my confidence and trust grew over time. More importantly, we became friends. While some of the questions were repetitive, they were necessary; my life was at stake. Every time my medication changed, I had to see my NP a week later to check my levels. I had to get my blood drawn every 3 months. When I didn’t know what to talk about, I nervously waited for a prompt, and responded accordingly. Seeing them became part of my new routine, helping keep my equilibrium balanced; they were my helmet. During this time, we found I had an underactive thyroid: more medication to counter the side effects.

I’m forever indebted to both of them, as well as the support staff I came to know. I know without their help, I wouldn’t be here. I felt my wings spreading and was ready to fly!

 

Guest Blog - A Mother's Perspective

I do savor those too few spring mornings when there are no after school activities, no physical therapy, mornings when he rides his bike to school (they told us he’d never ride a bike).  Those mornings when I can sneak a few extra moments to read the news, straighten up, or just take my time getting ready for work.  The spatter of rain drops on the back porch tells me this is not one of those mornings.  Guess I’m going have to drive you today, I mumble.

You’re wearing THOSE shoes?  I say, almost grinning as I notice he’s put on the Nike slides we bought for after sports. (the sports he wasn't supposed to play)   He seldom wore them before the surgery to correct the contracture because his heel didn’t touch the ground and they kept falling off, tripping him.  “Yeah” he grunts in typical teenage fashion, “They’re my lazy shoes”. 

He’s unusually chatty today which is especially strange because he normally sleeps the entire mile from home to the high school.  I take advantage of it.   Soooo….I say, as we pull out of the garage, have you been preparing for the AP exam in class?  Yep, all month, he says. 

I can’t hide my excitement, I'm almost giddy; after all he’s only a freshman and used to be a special education student due to physical impairments.   In second grade he had some issues in school we had evaluated because we were concerned there were cognitive impairments too.  Tests revealed a high level of intelligence was the real issue. He needed more challenging work.  Not a bad problem to have after all.

When he was diagnosed with Cerebral Palsy “CP” as we call it, at 19 months, it was like someone punched us in the stomach.  It made us sick, dizzy.  What did it mean?  What will he become?  Will he live independently?   They told us they didn’t know what it would mean, what he would be capable of. But it seemed they set us up for some very low expectations, why assume the worst?  The truth is, no parent can ever know what their child will become.  Parents of children with or without disabilities are all in the same boat here.  The best thing you can do for your child is to let them raise to the level of their own capabilities, no matter what they are.  Don't burden them with your own doubts or insecurities, or the labels others may put on them.    I am not saying it’s easy, especially for parents of children with special needs.  You have to learn a whole new language and culture.  But that’s our job as parents, to do whatever it takes to help our kids succeed, to be their champion.  We spent countless hours driving back and forth to a city 30 miles away for clinic visits, doctor’s visits, PT, OT, Botox shots, eye doctors, leg braces, what the heck is an I.E.P.?, blah, blah, blah.

We drive on and continue chatting about visiting colleges this summer and next fall, Chicago, East Coast schools, IVY LEAGUE, DARE I SAY IT?  I’m surprised to learn he really doesn’t want to go to State.   “I only like their football team, he says”.  

As we pull up quite short of the front door, he jumps out and says, “I’ll get out here Mom”.

I linger, watching him walk almost all the way in, one leg just a little skinnier than the other, limping slightly but with confidence, and I am so proud to be his Mom.

A Stephen King Love Story

 

Wedding Day - July 27, 2002

Dear Stephen King,

I want to thank you for something. No, it’s not for writing tales that make the hair on my neck stand on end. And, no, not for the inspiration you provide for my own writing.  I want to thank you for introducing me to my wife, Dawn.

Back in 2000, after finishing college in December 1999, I started an online posting board about your work with the intention of making friends with fellow Stephen King fans. It worked. But in the process, I also fell in love with one of the regulars who started posting.

I had my regular posters on the board, who I’d gotten to know and we became good friends. These friends included Paula from West Virginia, Debra in North Carolina and Ardette from Maine, among others. We had great conversations about your books, films, and trivia and about life outside your world.  We exchanged photos, had online chats and even talked to some of those friends on the phone.

But there was this shy poster. I didn’t know the name of the person. The person went by kit-o. The person was intriguing. Her posts also were intriguing and well thought out. Eventually I found out the person’s name was Dawn. I wanted to get to know her better. Even then I was falling in love. I know it’s weird to say that because I only knew this woman by what she posted and the little information she provided.

It took me some time to ask for her e-mail address.  Then it took almost as long for Dawn to give me her e-mail. I was elated to have some other outlet to contact Dawn other than the online posting forum. I saw the possibilities as endless.

To cut a long story short, we finally got to email each other in early 2001. Instant messaging followed in March. Guess what day was our first online messaging chat? It was on her birthday night. I’d sent her an e-greeting the day before, which made me nervous. I didn’t want to seem too forward. You should have seen the time I took to choose an e-greeting before emailing it. Anyway, on her birthday night, I sent her an email asking her to get instant messenger. As I sent the email, she was already downloading the Yahoo program. Coincidence? I think not. We spent hours chatting online that first night. It was like chatting with a long, lost friend and we were catching up. It was quite an experience, one I still hold dear to my heart. It was unforgettable. The following night, a Saturday, we did the same thing, chatting all night.

On Sunday we chatted again during the afternoon. This time I slyly gave her my phone number, hoping maybe, just maybe, she’d give me hers. She did! Then I made a phone date for that Sunday night. You wouldn’t believe how nervous I was as I dialed the number. My fingers shook and my heart was thudding. Finally, the voice that I’d only imagined for eight months said, “Hello?” The barking of a dog (her sheltie Duffy) followed the sound of her voice.

We were on the phone for hours and hours. And she had to work the next day. Still, we couldn’t seem to get off the phone. It was as if we’d known each other for years and were picking up the conversation again.

Things sped up after that. We continued our phone conversations on a daily basis. Then in April she flew from Maryland to San Antonio. I’ll never forget the scent of her perfume as she opened the front door to the Riverwalk Inn. It was heavenly. She had a shy smile on her face and wore a pretty dress. We spent three days in San Antonio.

There was another visit on Memorial Day weekend. That turned out to be a pivotal visit. After those three days and some discussion, she made the decision to move to Texas.  She moved to Texas several months later. Now we were together. None of this long distance stuff.

To cut the story short again (sorry Steve, this can’t be like “IT” or “The Stand”), we got married on July 27, 2002. Where? Well, in San Antonio, of course, at The Little Church of La Villita. It was a quaint and intimate wedding. The way we wanted it.

After living in Texas for awhile, we moved to Holland, Michigan, where we are today. This is her hometown. A place of three-and-a-half seasons, beauty, and comfort. A place where we get to live and enjoy our lives together.

I don’t say this much, Steve, but I feel blessed to have met and married Dawn Permesang. Think about it. What are the chances that online, she’d pick my, MY, online posting forum? I’m sure there were countless ones out there. After all, you are prolific and one of the most popular storytellers of our time. Yet she chose my online board, the one with about 10 to 15 regular posters. I guess you’d say the chances of her ending up at my online posting board were in the millions against it.

Today it is eleven years of marriage. We have three kids and one cat. She’s a homemaker and I teach English as an adjunct instructor at a community college and write short stories in my spare time. We still read and reread your work and watch your movies. I just read Doctor Sleep and thought it was one of your best.

I’ve wanted to drop you a line about this for some time now, Steve. I want to thank you for playing an inadvertent but intricate role in helping me meet my wife, the intelligent woman with the beautiful, soft, brown eyes and the capacity for such warmth and love, the one with the tender smile. I love that gal.

Your Constant Reader,

Roel Garcia

"The greatest thing you'll ever learn is just to love and be loved in return."

What is love? Is it waking up next to a person and having a smile on your face because of the feelings between the two of you? Is it coming home from a tough day, or a simple day, and having your favorite meal already prepared for you? Is it driving together, without a care in the world, singing your favorite songs? Is it falling into the arms of your partner because there are times when the world can seem too much? Is it a simple, sweet kiss? Is it sitting in the same room, with nothing but silence, and feeling as though there is nothing better? Is it finishing sentences for each other? Love is all of these, and so much more. I feel confident saying this because I’ve been together with my partner, Luke, approaching 6 years.

 

At Artprize, Luke defined “freedom” as part of a hands-on entry. As he often does, he brought out so many emotions, with so few words, and put it on display for everyone to see.

If you want a dictionary definition of “love”, you can easily find it. Love isn’t simple, though. Love isn’t as easy as grabbing a dictionary and looking up a word. Love takes time, and is well worth the wait. Love isn’t just a word, it’s a feeling shared between two people, running deep within the skin of each individual. Love is an emotion which has no boundaries or rules, unless those involved choose to set them. This is one of the many wonderful aspects of love: there’s a fantastic sense of freedom involved. Don’t like rules? Then you don’t have to make them. Rebellious? Make rules, only so they can be broken.  A word of advice: learn to compromise with your partner. Doing so will allow each of you to learn even more about each other and see happiness in their eyes.

Define what love is to you and then go look for it. Or don’t. Sometimes when you aren’t looking for something, it’s right in front of your eyes; all you have to do is open them. I wasn’t looking for Luke when I found him, and he wasn’t looking for me when he found me. There was a moment in time where I couldn’t picture myself without him right next to me, and I had no choice but to capitalize on that exact moment. Life has a way of working out when you don’t necessarily believe it will. Before looking, or not looking, for love in others, be 100% sure you love yourself.

I don’t know everything about anything, but I do know a little bit about many things. One of those little bits I am very confident saying is this:  “The greatest thing you’ll ever learn is just to love and be loved in return.” I know this because Luke has taught me to love myself more, while also learning how to love others. I know that we both continue growing as individuals, and as one. That feeling is one which can only be defined by one word: love.

- Brandon -