On November 28th, I published my 75th blog post. I ended the post with a challenge to myself to post 75 blogs in the next 75 days. If you follow me, and read my blog regularly, than you have noticed that I haven’t been around these last few days. Fear not! This doesn’t mean I will not meet my goal of publishing 75 blogs in 75 days. This merely means there will be a few days I will be publishing more than one blog. Starting with today, I might just publish one, some days I might publish two, and if I’m really ambitious, I might even crank out three.
Where have I been and why did I miss Saturday, Sunday, and Monday?
I spent the weekend at the annual state convention of the National Federation of the Blind of Nevada. As I play the game of Musical Chairs, I have decided it was time for me to get back in the game and change negative misconceptions and low expectations about blindness. Stakes have been raised and rules have changed now that my daughter has been thrown into the court. You can bet your britches that this mom is NOT going to stand on the sidelines. I will be the loudest, the most competitive, and the strongest advocate to fight on behalf of my daughter’s rights and the rights of all blind children.
During the convention, I met other parents and we are organizing the Nevada Organization of Parents of Blind Children. It is my hope for this organization to bring together parents, provide resources, connect blind shildren with positive blind role models, and creat and implement programs for blind children in our state.
I fully intended on blogging via my WordPress ap on my iPhone, but the ap insisted it would rather crash on me. After the fourth attempt, I took it as a sign that I needed to turn off my phone, take a break, and take a nap.
Sunday on Monday were spent catching up with housework, cuddles with the kiddos, and a lovely afternoon meandering through the Venetian playing catch up with one of my oldest and dearest friends.
And here I am now, back in front of the computer with the kids tucked away in their beds. I will finish this delicious cup of tea, possibly start a second blog for the night, and start on the glass of wine that’s calling out my name. I’ve enjoyed catching up. I hope you have too.
Marley followed this girl around thinking she was a princess. Suddenly out of nowhere, she worked up the courage and ran up and gave her princess a great big hug.
Jackson didn’t know what to think of this statue guy. He got more and more frustrated as he tried to give him a dollar.
Are you a parent of a blind/visually impaired child living in Nevada? Do you know a parent of a blind/visually impaired child in Nevada? Are you a teacher of a blind child, or a medical professional who works with blind children? If so, than I am looking for you.
Allow me to introduce myself. My name is Terri Rupp. My almost 5 year old daughter and I both have Optic Nerve Atrophy. I wrote about the discovery of our daughter’s diagnosis earlier this year in my blog, “Marley and Me Musical Chairs.” I feel fortunate to have my own experiences of growing up as a blind child, the opportunity to attend the Louisiana Center for the Blind where I learned Braille and other blindness skills an where I was introduced to the positive blindness philosophy of the National Federation of the Blind. The foundation has already been laid for my daughter through my own blindness for her to grow up knowing that blindness isn’t anything to be ashamed of. It will NOT hold her back from a bright future, rather it will give her strength to overcome any and all obstacles if given the proper training and opportunity.
My husband and I want to share our positive outlook on blindness with other parents. In all honesty, we both went through our own grieving process upon the diagnosis. However the self pity, anger, guilt, and tears quickly tried up, and we both realized that this is just another mountain for us to conquer as a family. During our frequent visits to the pediatric ophthalmologist, we have observed countless distraught, lost, and grieving parents of whom we just want to shout at, “YOUR CHILD IS FINE! YOUR CHILD IS NORMAL! YOUR CHILD HAS A BEAUTIFUL FUTURE!”
My dream is to get this message to every single parent in Nevada. You are NOT going through this alone. There are so many us out there just like you. We are dealing with understaffed and underfunded school systems. We live in a state with very limited resources for equal opportunities for the blind. We CAN change this! With the resources and support of the National Organization of Parents of Blind Children (NOPBC) and the National Federation of the Blind (NFB), we can change what it means to be blind, and give your children the future they deserve.
Please join us in organizing the Nevada Organization of Parents of Blind Children. You can reach me at email@example.com or join our Facebook group https://www.facebook.com/groups/653738258066532/.
Oh, and PS, did you know that October is National Meet the Blind month?
I feel like I’m in a real life game of musical chairs. First I was the blind child, then the blind student, then the blind parent, and now I’m sitting in the seat as the parent of a blind child.
This blog has been a draft in progress, and I’m finally ready to share it with you all.
About 2.5 years ago, we brought my daughter into see the pediatrician for a double ear infection. This was when it was first brought to our attention that she had a nystagmus. After a few trips to the eye doctor, we were given the diagnosis of Spasmus Nutans. This is the combination of the Nystagmus, Amblyopia (lazy eye), and a head tilt in response to the other two symptoms. We were told that this was common in eye development in toddlers and it should correct itself by school age.
Over the next 2 years it looked as if it was somewhat getting better, only showing when she was really tired or concentrating to see something at a distance. But as her fourth birthday came around, we noticed more and more signs that perhaps we were just looking for it to get better because the doctor said it would
I noticed that she was having difficulty seeing the letters in her books while we were working on reading and writing. My husband noticed she was having difficulty tracking things at a distance. Some of my close friends noticed that when she went to grab an object, it looked as if she wasn’t reaching directly for that object but more feeling for it.
I couldn’t believe I let two years go by since her last eye check up. When I called to make an appointment in January, the first available appointment wasn’t until May. This wasn’t acceptable, especially to a worried parent. After asking around, I found another ophthalmologist who came very highly recommended in my network of moms. I also decided to contact the school district to see if she would qualify to get into their preschool program, because if she would be needing any services I wanted to start the process sooner than later.
After a series of assessments with the school nurse, psychologist, vision test, and hearing test, we sat down to our first IEP (Independent Education Plan) this last Tuesday. It was determined that my daughter qualifies to start preschool under the fact that she would be a blind/low vision student. Keep in mind that we hadn’t yet seen the new eye doctor. There was much discussion about what accommodations and services she would be given As I’d expected, there was much disagreement on the topic of Braille. The low vision specialist claimed she felt my daughter has too much vision to learn Braille, that it would slow her down and confuse her. Knowing the IEP process, and knowing that I was able to ammend it if I felt need be, I simply told them that if they didn’t want to teach her Braille in preschool, that was fine with me. I am already teaching her Braille, and by the time the school district is ready to approve Braille instruction, she’ll already be fully reading uncontracted Braille, and far ahead of her peers.
A few days later, on this last Friday we visited her new eye doctor. It turns out that she doesn’t just have the three sypmtons that make up Spasmus Nutans. She’s got Optic Atrophy just like her mama. It’s very possible it was a dormant gene that appeared in me, then I passed to her. It could be that since we weighted two years without treating the Amblyopia, it caused the atrophy in the eye. It could be a fluke coincidence. However, all that matters is, she’s got the same eye condition as me. The doctor also told us that her vision loss is severe enough that Braille would be best for her. Forcing her to read print would only strain and stress her eyes thus possibly making things worse.
I’ll be honest. This weekend consisted of a whole lot of tears, a whole lot of guilt, a whole lot of grief, a whole lot of anger, but also a whole lot of of inpouring of love and support. It also consisted of a whole lot of pride. On sunday morning, I heard my daughter chatting away while she was eating her pancakes. My mommy ears perked up when I heard her say, “X is 1 3 4 6.” I then asked her to show it to me, which she did on the little wooden Braille block that we play with. She then told me that X was her favorite letter in Braille. I was overwhelmed by the comforting feeling that no matter what, everything will be fine. She is a happy, healthy, beautiful, bright, and strong little girl that will succeed in whatever her heart desires.
With my own personal experiences, with the resources and support through the National Organization of Parents of Blind Children and the National Federation of the Blind, with the love of family and friends who will treat her like every other little girl out there and not like a child that needs to be tended to or coddled, I plan to surround her with nothing but positivity and make sure that she grows up to be a confident young lady doing whatever she wants to in life.
So…to my dear sweet Marley, this song is for you, because you’re amazing just the way you are.