Wednesday, May 25, 2011

Same as my story

Found this article , which was exactly what i went through when my son was born ..Now my son is 1.5 year old .

Raising a Blind Child: Join the NOPBC!

by Laura Weber

Laura’s daughter, Lindsay Adair (TX) in her Fourth of July regalia at the 2006 convention.Editor’s Note: Laura Weber is the president of the Texas Parents of Blind Children (TPoBC), a division of the NFB of Texas and one of the newest affiliates of the National Organization of Parents of Blind Children (NOPBC). Texas will be the host of the 2008 NFB Convention, and Laura and our Texas parents will be on hand to help make it the best convention ever for families of blind children.Here is what Laura has to say about her experiences as the mom of a blind daughter, and what she has gained from her membership in the NOPBC:

When we took our daughter to her two-month checkup, I mentioned to her pediatrician that her eyes seemed to jerk and that she wasn’t visually tracking things yet. She wasn’t on track with the developmental checklists and, although I wasn’t too worried, something didn’t seem right.

Our doctor told us that the involuntary eye movement was known as nystagmus, and he got us an appointment with a pediatric ophthalmologist that very same day. I guess I should have realized that something was up for us to get an appointment so soon, but I still wasn’t overly worried. The ophthalmologist confirmed the nystagmus and after examining her, told us that Lindsay was extremely farsighted. She rapidly ran down a laundry list of conditions that might be causing the nystagmus, and told us to come back when Lindsay was six months old. We left the office feeling confused and frustrated, but we thought that being farsighted wasn’t that bad. She would just have to wear glasses, right? Wrong.

We got a copy of the ophthalmologist’s records and showed it to a friend of ours who is an optometrist. Jotted to the side of the exam notes were the words “possible Leber’s Congenital Amaurosis.” Huh? The doctor never mentioned that in the exam. We started researching on the Internet, and what we found was very frightening.

Unable to wait another four months, we made an appointment with another pediatric ophthalmologist for a second opinion. He told us that he agreed with the diagnosis that had been jotted in her chart, and said that we should probably start looking into things like Braille. But, like the first ophthalmologist, he never used the word blind. Then he ushered us to the front desk to pay our bill, and sent us on our way. That was it. That was how we found out that our beautiful, healthy, and perfect baby was blind. And, apparently, that’s where the doctors felt their obligations ended. We were never referred to early childhood intervention services. We were never referred to a parent support group. We were never given books, brochures, or a list of references. We were just sent home.

We were devastated. We were lost. We felt like all the dreams we had for our daughter’s future were crushed. And everyone around us contributed to that thinking. Some friends sent us flowers. A neighbor from down the street whom we had never even met, heard about Lindsay through the grapevine and brought us a daily meditation sympathy calendar. People offered to cook for us. Everyone said how sorry he or she was. Now please don’t think that I didn’t appreciate their attempts at being supportive but, in retrospect, they treated us exactly like a family whose child has died. And that’s how we felt.

I started searching the Internet for support groups and information, and I became more depressed. I read articles about blindness that reported the low employment rate and high illiteracy rate among blind adults. I met other parents of blind children, and the message I got from them was how hard things were going to be. They talked about IEPs and ARDs and CTVIs and COMS--and lots of other acronyms that flew right over my head. They told me that I would be in a constant battle with the school system and with insurance companies to get Lindsay the services she needed. They told me my daughter would be discriminated against, and I’d need to become an expert on the law and on advocacy. Where was the good news? Who could tell me what to do? Who could tell me that it would be okay?

Then I got in touch with the National Federation of the Blind (NFB). I requested information from their parent division, the National Organization of Parents of Blind Children (NOPBC). I can’t explain what it meant to me to hear--for the first time--positive things about blindness and about what Lindsay could accomplish. I read information packets and Kernel Books and presidential addresses, and all of it hammered away at the same message: blindness is respectable. The mantra I kept repeating to myself over and over was this:

The real problem of blindness is not the loss of eyesight. The real problem is the misunderstanding and lack of information that exist. If a blind person has proper training and opportunity, blindness can be reduced to a physical nuisance.

When I first contacted NOPBC, they did not have a parents chapter in Texas. So, I got involved in another local parent support group. It was a great place to meet other parents and to find resources, but something was missing. I wanted to be part of a group that promoted a positive message about blindness, and I wanted to meet blind adults who could help me teach those beliefs to my daughter. A group of parents, teachers, or therapists can sit around all day talking about how to teach my daughter blindness skills, but only a blind person has experienced being blind. I’ve met wonderful, caring, and intelligent professionals in the blindness field, and I’ve learned a lot from them but, unless they’re blind, they are speaking as observers. For many of the things that my daughter needs to learn, that’s fine, but when she wants to talk to someone who truly knows what she faces and how she feels, I believe that only another blind person can fill that need. The analogy I like to use is this: a man can be a brilliant, talented, and caring obstetrician. He can have the knowledge and skills to deliver babies. He can have a wonderful bedside manner. He cannot, however, tell you what it feels like to give birth. For that, you should talk to another mother.

In my opinion, the major difference between NOPBC and other parent groups is that the NOPBC is part of the NFB, and the NFB’s philosophy is what I want my daughter to learn and live. I want her to have a positive attitude, self-determination, and high expectations; and I want her to have competent, successful blind role models. NOPBC helps me stay focused on my goal to raise my daughter to be a happy, healthy, independent, and successful adult with good life skills, social skills, academic skills, and career skills. In short, I want for my child what all parents want for their children. My desires and expectations aren’t different or lower because she’s blind.
Last fall I had the privilege of attending the NFB of Texas state convention in Houston, and at that time, a state chapter of NOPBC was formed. Texas Parents of Blind Children (TPoBC) came to life, and I was elected president. My goal is to pass on the message of the NFB to parents of blind children all over Texas.

My daughter turned five years old this summer. She’s slowly but surely learning to use a cane and to read Braille. She’s smart and beautiful and is, without a doubt, the happiest kid I’ve ever met. I feel good to be raising her in the NFB. I want her to have the opportunity to have a Braille pen pal, participate in Braille reading contests, and have a blind mentor. The NFB has all those programs. I also want her to meet successful blind adults, and to be able to go to them with questions and frustrations. I will never be able to completely understand what life is like for her; besides, what child wants to go to her mom all the time? I want Lindsay to go to camp, have summer jobs, get life skills training, go to college, and have a career and family. The NFB promotes all those things. Together we’ll teach her that it’s respectable to be blind.


Friday, March 11, 2011

A hope for LCA

A legally sightless, 9-year-old boy since birth had an ailment that would gradually devour hisvision, but has lately been restored to normal eyesight with merely a single shot.

The implausible procedure is a ray of promising hope spelling a conclusion to blindness in some cases. The Geneticists from the University School of Medicine, USA, have successfully snapped the cipher for creating light-receptive seeing cells that would help regain sight in many blind in the UK.

During this path-breaking procedure, Corey Haas was the foremost patient globally to have been given this injection with the innovatory gene therapy following which his vision has become nearly perfect.

Corey was the foremost of the 5 kids and 7 adults with the rare condition LCA or Leber’s congenital amaurosis (affecting 1 in eighty thousand births) were fruitfully cured employing this original procedure.

Eyesight problemsLCA condition severely affects eyesight from birth onwards and gradually leads to total sightlessness.

The utmost progress were noted in kids, most of whom are presently able to plot a course through a low-illuminated obstacle course, that they earlier could not do prior to the treatment.

The jab functions by introducing genes within the body that created light-receptive pigments in the back region of the eye. This helped reinstate those pigments which were earlier damaged due to the condition.

Prior to undergoing the treatment, Corey had lost a major part of his eyesight and was incapable of clearly viewing the board in the classroom and needed huge print electronic screens for helping him view anything.

However, things changed soon following the eye jab and he can easily read the board without the assistance of any electronic medium and even engaging in physical activities with his schoolmates is now possible.

Dr. Katherine High belonging to the Center for Cellular and Molecular Therapeutics at The Children’s Hospital Of Philadelphia has stated that magnificent outcome is a positive change in the total field of gene therapy that would help in reinstating vision among patients that had earlier lost all hopes.

Such revelations could pave way for more R&D work for gene therapy in finding ways of curing the most prevalent retinal problems like age-associated macular degeneration.

Dr. Jean Benett Kirby, an Ophthalmology professor from the University Of Pennsylvania School Of Medicine states that the clinical advantages have been persistent for almost 2 years since the foremost entrants were given retinal jabs of curative genes.

The spectacular outcome has built the base for application of gene therapy to not merely other kinds of infancy-onset retinal conditions, but also for commonly occurring retinal deteriorations.

Dr. Bennett has stated that the newest outcomes are built on about two decades of gene research on heritable sightlessness, commencing with original work conducted on mice and dogs.

Leber’s innate amaurosis is a set of heritable diseases which causes major harm to the light receptors present in the retina thus robbing eyesight.

It generally starts robbing eyesight in early infancy and leads to complete blindness till the person touches ages between 20-30 years. Presently, there is no cure for LCA.

Wednesday, March 2, 2011

JAWS

I always wondered how difficult might be life for blind and visually impaired people but the technology is soo good, i just loved the software called JAWS, which is very helpful to use computers.

JAWS

JAWS (an acronym for Job Access With Speech) is a screen reader, a software program for visually impaired users, produced by the Blind and Low Vision Group. Its purpose is to make personal computers using Microsoft Windows accessible to blind and visually impaired users. It accomplishes this by providing the user with access to the information displayed on the screen via text-to-speech or by means of a Braille display and allows for comprehensive keyboard interaction with the computer.
It also allows users to create custom scripts using the JAWS Scripting Language, which can alter the amount and type of information which is presented by applications, and ultimately makes programs that were not designed for accessibility (such as programs that do not use standard Windows controls) usable through JAWS.

JAWS for Windows (JFW) is a program that reads information from a computer display and speaks it to you. JFW supports Windows 95, 98, ME, NT, 2000, XP Home and Professional, Vista and Windows 7.

Key features:

Dual cursor design, eliminating the need for Review Mode.
Built-in Auto-speak Macro keys that make decisions and read the screen automatically.
Both audible and visible pop-up menu system.
Logically designed Speech pad allowing single-handed operation.
Windows for selective screen reading.
Screen enhancements which recognize monochrome or color automatically.
Numerous voice configurations.
Special Help Mode which makes learning the keyboard quick and easy.

Hope the technology improves vastly and the life gets easier and easier for those who want to achieve more n more :)

Monday, November 15, 2010

New start up


Thinking to start writing my blog from today onwards..... Between this gap, so many things happened,i gave birth to my cute little one DIGANTH .. Was in India for one year with my parents and in-laws,had gala time there, did my sweet sister's marriage,met my dearest REKHA.. I dont know, it will happen again in my life or not... Now am a MOTHER, have lot of responsibilities to look after my kid, have lot of questions in my mind , Will i be a good mother?

Have to go through so many ups and downs in life to be a good mother right...


Thats all for today

Monday, August 24, 2009

How to Remove a Stuck CD/DVD from a CD/DVD-ROM Drive

Hello all,

I thought to share with you guys what i had an experiance yesterday... My CD/DVD drive in laptop got stuck and it was not opening... I tried a lot by ejecting in My Computer and even did manually but it dint work...

Atlast i found one video to remove a stuck CD/DVD from a CD/DVD-ROM Drive.

Just i followed the instructions and it worked for me.

So it may help you guys whenever u face this.

Monday, May 11, 2009

Happy Birthday


Yesterday night, dint get sleep for long time..So i went to my old memories...
Before 26 years ,i was in my moms womb.. I was born at 11:45 May 12th... 
I hardly remember my initial birthday celebrations..From 3rd standard i remember my birthdays..

In school days, i was always sad of my birthday as it comes in May ie Summer holidays :(
I used to see my sister,brother,friends distributing chocolates in school and i was feeling jealous of them. And even cake cutting things,ha as i was elder in my home even that was not possible.... My brother used to celebrate, but we used to enjoy a lot...

My birthdays i remember mom preparing  olge mango seekarne(Festival food). May month is famous for mangoes.. and i remember in my home birthdays were more than a normal day... I used get gifts from my friends and from my mom n dad.. I used to be the queen of the day. :)

I remember one incident, i think i was in high school... I don't know when i told my mom about my celebrations,that i dint  even celebrated my birthday ie cake,home decoration n all even once... I went to basket ball practise as daily i used to go.. When i was back  home... they bought very big cake and decorated home soo nicely and they were waiting for me...It was very big surprise and shock for me... I was little bit embarrassed to cut the cake n all in front of soo many people ;) but it remained in my sweet memories book.

Then in my college days, i met my lovely,sweetheart Rekha..She celebrated my birthday , it was a full on surprise. We were back from college, she asked to get ready for distinction party.We used to celebrated every semester distinction party(who all got distinction used to treat all of gals in class)..This time no one were interested as all of them were tired.She made all of us to get ready and we went. After reaching there, i saw  a big cake on that it was my name and i was soo much surprised n we had great fun there.

I got married, venky (hubby) is not that much interested in birthdays , gifts n all.. Why to give that much importance for this day :( is his opinion.

But i dint leave him, i made him to remember all the birthdays n anniversaries :) and made him to give gifts to me.

Ya my first birthday gift after marriage was a mobile :)
My second one,no gift as he was in US and i was in India ..
My third one is ipod mobile, even this i made him to buy for me...

This is my fourth birthday, he asked me what i want , this time am thinking to ask nothing,as gifts should come in surprise not by asking..:)

Anyways Happy birthday to me :)

Wednesday, September 10, 2008

Beans-carrot palya

Beans is my hubbys favorite veggie, whenever we go shopping even if i forget to buy beans he wont..But am not fond of this veggie as i can do only beans sambhar or palya. But its very good for health ;)
So thought to post you how i did this one.





Ingredients:

1/4 kg fresh beans, chopped into small pieces
1/4kg fresh carrot, chopped into small cubes
1 onion finely chopped
4 green chillies
1/2 tbsp oil
salt to taste

For seasoning
1/2 tsp mustard seeds
1/4 tsp cumin seeds
1/2 tsp split gram dal
10-12 curry leaves


Method
1) Boil beans and carrot with salt and turmeric,till they become soft

2)Heat oil in a cooking vessel, add mustards seeds and let them pop. Add the cumin seeds and split gram dal and once they turn slightly red, add fresh curry leaves, chillis and chopped onions and saute on medium heat for 5 mts or till the onions turn transparent.

3)Add the boiled beans and carrot and combine. Sprinkle a 1-2 tbsps of water and place lid. Simmer for about 8-10 mts.

4)Adjust salt and stir fry the beans without lid on high flame for 3 mts.Turn off and serve hot with chapathi or rice