Deafblind students and a mother’s story

Deafblindness, also known as dual sensory loss, ranges from mild loss in hearing and vision to total deafness and blindness depending upon its various combinations.
Let’s meet some of the students enrolled in Sense International India’s training program in this film, each experiencing different degrees of deafblindness.
We will also hear from a parent who opens up about her struggles, navigating an unfamiliar world and overcoming challenges to transform her experiences into strength.
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Generally, when we talk about deafblindness, people understand deafblindness to mean persoons and children who cannot hear or see at all.
However, right here, you can see that the first student sitting here with me, has some difficulty seeing and cannot hear at all – she has low vision and cannot hear at all.
Then, this second student sitting here cannot see at all and has hears very little.
So, you see this is another kind of deafblindness where a person can’t see at all and has mild to moderate hearing loss.
Another student sitting here has had a cochlear implant.
Earlier, she could not hear at all, but after the cochlear implant, she can hear, but she has difficulty with speech and also has low vision.
The young student sitting next to her, his name is Yug, he has hearing loss and has low vision.
The student you see next to him, cannot hear at all and also has visual impairment.
This visual impairment is referred to as CVI – Cortical Visual Impairment – which means a person is only able to perceive if certain colors are contrasted against others, without proper contrast it is very hard for the person to see with this condition.
And this student also has cerebral palsy.
“Yes”
‘Chha”
“Yes, after that?
“After Chhatri ka Chh, what will come”
“Jamruk na J” Very good. Write..
This is Veer.
He has total blindness and cannot see at all.
While he can hear, he has a problem with his auditory nerve, known as Auditory Processing Disorder.
Additionally, he has a vocal cord issue that makes speech difficult for him and has only one kidney.
Along with deaf-blindness, Veer has associated disabilities and that is why he attends training here at Sense International India.
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He is 12 years old now, and we had placed him in early intervention since he was 5 years old.
That was when I first learned about his disability.
Till the age of five I had no knowledge about this.
If I had known earlier, perhaps I could have started teaching him sooner, done something at home, or arranged hospital tests earlier.
But until he turned five, neither I nor my family members were aware of his disability.
After that, I found very supportive teachers.
Initially, they told me that he wouldn’t be able to understand, and since he can’t see, he wouldn’t be able to speak either.
So, even my family wondered how he would ever learn.
But the teachers suggested some activities.
At first, it was hard for me to believe how a child like him could do all this, but with the teachers’ support, I also started teaching him, supporting him little by little, and he began to learn.
For example, most children learn to dress themselves by the age of three or four, but for him, it took seven to eight years, a much longer time.
When he turned ten, that’s when I first learned about deafblindness and that kids like him are called “deafblind”.
The teachers continued to support him.
He didn’t even know how to eat on his own.
Most children can watch and learn, but because he also has an intellectual disability, he struggled with basic tasks like eating on his own.
But after coming here, the teachers patiently taught him how to eat by hand.
They were good and extremely supportive.
The biggest factor in this journey was our lack of awareness.
The truth is, many people don’t realize that children with deafblindness can learn and develop skills.
For the first five years of my son’s life, my family insisted that I should not even send him to school.
It is because of me being adamant that he has been able to join the training here. My family believed he wouldn’t be able to learn anything and that he should just stay at home, where we would continue to bring him up like this.
But now, after ten or eleven years, when he is doing things independently – going to the washroom, eating, drinking – now my family realizes that there are schools that can teach children like him too.
He has also learned some sign language.
The teacher has taught him a few signs, so now, if he needs something, he gestures for it.
So, my family felt that the child could learn this thing.
Since he cannot see, the teacher teaches him sign language by holding his hand, and he has learned a few things this way.
When the family started using the same method at home, they saw that he was capable of learning.
My eldest son is also blind so I had some knowledge about blindness.
While raising him, I gained knowledge that helped me support my younger son.
My older son knows his brother cannot hear and difficulty in communication, and that he is also blind like him, so he teaches him, for example whenever my younger son needs to hold a glass, he supports him and shows him how to hold it.
And if something needs to be taken from one place to another, he places it in his brother’s hand and tells him, “Go, give it to Mom” explaining it to him in this way.
My older son is very supportive.
My older son was just three or four years old himself when the youngest was born.
It was very challenging with the family.
Firstly, it was difficult to make them understand. Then there was also a question of how to explain to others and even understand my own self.
I first explained it to myself.
Then I explained it to others, to the family members – little by little.
Beyond that, there was the challenge of making outsiders understand.
Just getting here was a long journey – our home is more than 180 km away – and I used to travel that distance daily to bring him here.
In my village, no one knew anything about disabilities.
People would say things like, “Your son is disabled because of you”, but this is a medical condition – how could it be in my hands? Right?
I’m so sorry.
I had to keep explaining to them that this was not something I caused, but perhaps I was chosen for this journey – it’s a challenge for me – so that I can do well, by learning.
I am being given training to help my son and as I am helping my son today, in the future maybe I can support other caregivers.
I used to explain this, kept explaining to everyone.
I never gave up. No what matter happened, I never gave up.
After ten years, I finally met people who understood all this.
My family acknowledged my efforts, saying that she has worked very my hard and thus was able to do so much, teach him so much.
Now, when they meet other parents with children like him, they bring them to me and say, “You should motivate them. They’re not able to understand how this disability is, so you support them, motivate them.”
I did so with many people. I did.
Whatever I have learned through my experiences, however far I have come – parenting both of my children – I just want other parents and the child to get access to education.
At the very least, children should be given the opportunity to learn, receive education, so that they can become independent in whatever way possible.
It’s important to teach them how to do things independently, according to me.
Secondly, there needs to be awareness.
People need to understand this disability better.
Parents need to talk about this disability and seek knowledge.
It’s in the hands of parents, especially the mothers.
She can’t just sit around, only supporting her family at home and listening to family members who discourage her.
She has to step out, learn, get informed and educate not just herself but her child too- this is necessary.
We cannot abandon them. They are our children.
That is the truth. They are our children.