Advocating Self Advocacy

 

 

Parents having children with hearing impairment are extra cautious around them. The need to be around their children and ensure that no harm comes to them is but natural. However an important fact to keep in mind is that children with any kind of impairment need to be taught to lead normal lives. The fundamental reason behind going for hearing aids or cochlear implants is to enable such children to live fairly independent, normal and regular lives.

This fundamental reasoning is lost if the parents are forever hovering around the child and helping them do basic things. The child needs space to grow and to handle situations by himself. This is possible only if we teach them self advocacy right from the beginning.

What is self advocacy? Self advocacy literally means ‘the action of representing oneself or one’s views or interests.’ Being able to do things independently will give your child a sense of purpose and worthiness.

Self advocacy helps them gain awareness of personal preferences, likes, dislikes, strengths, interests, potential and limitations. It helps them differentiate between wants and needs. It helps them make choices and consider multiple options after calculating the consequences of their actions.

The following points will help you understand the importance of self advocacy and how it will help your child gain confidence to face any situation head on.

Teach them the basics:

Children can be taught the basic workings of their hearing aids or Cochlear Implants and should also be able to recognise when the battery runs out or gets disconnected. Children going to play school (age 2.5yrs-3yrs) can be taught to inform if their device is not working. This differentiation will help them reach out and report to adults as soon as they sense something wrong.

Start Early:

There is no such thing as ‘too early’. Start developing self-advocacy skills in your child as early as possible.

As they grow older children (age 4yrs to 5yrs) should be taught to be more expressive if they fail to hear or understand something. They should be able to judge the distance required to hear better. They should be able to clearly communicate that they require the speaker to talk softer, louder or slowly. Teach them to ask for repetitions if they have not understood something.

Being vocal will help them develop their vocabulary as well. The more words they use, the more they learn pronunciation, sounds, vocabulary and language.

Communicate:

In a new environment, the child must have the confidence to walk up to an adult and inform them about his or her needs.

They should be able to explain to the teacher and find the right spot to sit in class. A shy child might find it difficult to do so, but make them understand that they need to speak up for themselves if they have to learn in class.

Most importantly the child should be made to understand that the hearing aid or Cochlear Implant is meant to help them function like regular children and should not be taken as a mark or symbol of any disability. It is their friend and should be treated as one.

Seeking Help:

If communication is important, then asking for help is equally important. The child should be made to understand that asking for help is not wrong. Asking for help will not lead to them being mocked or laughed at. They can confide in friends and ask them for notes or updates if they miss out on hearing the instructions or lectures in class. This confiding will strengthen their bonds with these friends and will make for a wonderful foundation to a long lasting friendship too.

Mental Preparation:

In a comfortable, known environment with help from family and friends the child will be able to function normally. However, how will the child cope in a new environment without a known person to help or support? Prepare your child for such unaccounted or unplanned situations. What if the child gets separated from the parents in a mall? What if the child has to go to another school for a project or a submission? How will the child deal with such situations if he is not made aware of them in the first place? Mentally prepare your child to face such challenges. Teach him to approach people and ask for help without feeling insecure. Teach him to be confident and importantly encourage him to go out and experience the world first hand by himself.

Maintenance:

Teach your child to keep the hearing aid or Cochlear Implant in a safe place or in the Dehumidifier when they are not wearing it. They should be taught to automatically include ‘wearing of device’ into their morning rituals once they wake up. It should be as natural as brushing teeth.

Final word:

Do understand that children with hearing impairment are like normal children but hear differently. They need to lead normal lives and enjoy all the things that regular children do. They only need a little help in hearing and that is possible with the collective cooperation and support of everyone the child comes across.

Hearing should not be a privilege, it should be a right.

Ritu Nakra

LSLS Cert.AVT

Listening beyond hearing

 

 

 “Deaf people can do anything hearing people can, except hear!” – Dr. King Jordan

Any journey to unknown territory is scary. The excitement, anxiousness, fear, emotional upheaval and anticipation add to the drama. However once you set sail, you face the waves as they come and that is exactly what we at HearMeSpeak have done.

It has been an educative, sometimes tiring, sometimes exciting, and never-a-dull-minute kind of journey for us this past year. With wonderful and heartfelt support from parents, doctors, specialists, therapists and lovely children themselves; we have completed a year on a high.

HearMeSpeak was started as a forum to help and educate parents with hearing impaired children. The idea was to explain to them that children with hearing impairment are no different from regular children.  At the same time, the mission was to help them get access to specialists who would help them help their children overcome the disability. The goal was to separate the ‘dis’ and focus on the ‘ability’.  Together with a team of individuals who believed in the vision and shared the same set of beliefs we have come so far.

The icing on the cake for HearMeSpeak was the Audio Visual movie directed by Vernita Verma and narrated by the face of HearMeSpeak – Alpa Bhawani. The movie focussed on how parents can use every day routines to develop spoken language in their child. A big thank you and round of applause to the parents who agreed to come on camera without inhibition and share their stories with the world.

In this exhaustive but highly productive year, we have grown- not just in numbers, but also in knowledge, information and support. We started off by connecting with families of children with hearing loss. Interacting with them, helping them understand the shortcomings, explaining treatment options and therapy benefits and seeing them succeed has been gratifying. Watching hearing impaired children communicate effortlessly and normally gives us a sense of satisfaction and euphoria.

Over the past year we have connected families with professionals (both within the country and those based overseas) from this field, through our face book page. Using technology to our advantage, we have conducted online sessions through blab podcast with these professionals and empowered families. We have discussed at length on various topics including, working upon higher language goals by cert. AVT, cochlear implant and what happens after switch on, guidance from audiologist and much more. In addition, we have released blog posts on special occasions like mother’s day, father’s day, Diwali and Christmas.

What makes the journey interesting is that all the activities we have initiated and carried through have been done with unconditional love and with a will to educate our society, all free of cost. We haven’t charged any of the families involved a single fee and have given our services wholeheartedly.

As a result, our good work and good will has spread not only in India but many parts of the world too. As we celebrate our first anniversary, we are reminded that we have much more work to do and many more people to connect with.  Because like Dr Jordan mentioned, “Deaf people can do anything,” and that’s precisely what we aim to be able to do – ANYTHING!

A special mention and heartfelt thanks to Ritu Nakra, Chetana Misra, Vernita Verma, Alpa Bhawani, Dr.Mohnish, Dr.Shomeshwar, Rajiv Thakkar (Parent), Dr.Ruchika Mittal, Vandana Joshil and all those families who came forward to be a part of it. We are blessed and honoured to have your continued support.

Best Wishes

Team

of

Hear Me Speak

 

 

 

LEAP ON AND ENRICH YOUR CHILD’S SPEECH & LANGUAGE THIS CHRISTMAS

  1. To develop Auditory Memory

There are many things that go on a Christmas tree – like bells, stars, gift boxes, balls, streamers, candy sticks etc in variety of colors. Involve your child in decorating the Christmas tree.

ACTIVITY 1

Before showing the materials, first name them and then take them out one by one. Now cover the materials with a piece of cloth and let the child remember and recall the materials seen in 30 sec.

2. To develop concepts of Positions:

ACTIVITY 2

Depending upon the level of the child, you can use language like, “Let’s put the star on top of the tree”, “Let’s put the golden ball on the right side”, “Let’s put the candy stick in-between two golden bells, etc. Similarly you can introduce other positions like:

  1. In front of, beside, behind, etc.

3. To facilitate Imagination:

ACTIVITY 3

Talking to your child about Santa Clause, and imagining what your child wants Santa Clause to bring. Making up a story as per your child’s imagination helps to develop and enrich the Theory of Mind.

 

santa-clause
Talking to your child about Santa Clause, and imagining what your child wants Santa Clause to bring. Making up a story as per your child’s imagination helps to develop and enrich the Theory of Mind.

  1. To follow multiple Instructions:

 

christmas-card

ACTIVITY 4

Making a Christmas card:

There are many fancy nick knack materials available in the market like ribbons, bows, Santa’s face, stars etc. You can make a Christmas Card along with your child by giving multiple instructions like, “Let’s put Santa’s face in the center of the card and a silver star in the right corner “or “Make four gift boxes in each corner of the card and a heart in the center and then color it red”.

 

  1. To listen and tell the rhyming word:

ACTIVITY 5

You can play a game of rhyming words from the materials mentioned above. Like: Star – Car, Ball – Mall; similarly words like Santa, face, bow, bell etc.

 

  1. To understand why we celebrate Christmas:

story-of-baby-jesus

ACTIVITY 6

Reading a story book on Lord Jesus will help the child understand the real meaning of why we celebrate Christmas. Narrate the whole story and later help the child recall it in his /her own way.

 

GOOD WISHES AND A HAPPY NEW YEAR TO ALL OF YOU!

Ritu Nakra

(LSLS Cert.AVT)

For

Hear Me Speak

 

 

Journey of a fighter…. Ms.Neeta Mehta Parashar (Post-Lingual Cochlear Implantee)

It started in the vacations of 1989 ,when i was  on a  trip to U.S.A to visit my uncle’s house, I, suddenly  experienced  an  immense pressure  in one of my ears  while aeroplane was  landing.

My uncle being a child specialist took me to an ENT expert and after conducting several tests I was finally  given a hearing aid with which  I could  hear normally but i was extremely confused as how to react?

My classmates and school mates made fun of me saying,“  behri aa gayi ! ”

Some children used to stare at me which made me feel insulted. There were some teachers and classmates who used to sympathise with me, but that  only made me feel more pathetic

Being a shy and introvert person, I didn’t know how to express my frustration and I used to cry a lot. I stopped playing, going out and then one day, I decided to quit school.  From the next day I Started making excuses not to go to school and finally my mom got irritated with my excuses. When my dad came to know about it, he called me and said, “Beta lots of people wear spectacles, but that doesn’t mean that they are blind does it?  So the same applies to your hearing aid. You are punishing yourself without any reason or fault of yours. Don’t feel let down by any comments but face them with your head high. You are an  achiever not a coward. ”It was on t hat day, that I promised myself wouldn’t cry for this ever again.

Then as days turned into years, I completed my graduation, did some short term courses and then I finally got married.

All this while had been using my hearing aid. I always stood firm despite of receiving many harsh taunts from the world which included my so called ‘friends’. Only my parents and some college friends supported me throughout   my fight with this mental suffering.

In April ,2004, I had come back from Canada to see my ailing father. We planned a short trip to Haridwar. We were sitting on banks of ‘Har ki paudi’ ,when suddenly a guy dived into the river and the water splashed into  my ears

I experienced a slight pain which was not normal. I tried putting my index finger inside my ear to take out water but my God! I could not hear anything at all and I was experiencing a lot of pain behind my ear.

We tried seeing a local ENT doctor there in Haridwar, but it was all in vain.

We rushed back to Delhi as we all were confused what to do.

I then decided to visit an ENT living nearby who said, “ Infection ho gya hai ek hafte mein theek ho jaoge medicine khao”.

Four weeks went by, but I still could not hear any sounds. I felt like an alien who was isolated in a silent world. I was extremely confused as to what my next step should be. All I had to my advantage was lip reading and sign language.

Then my husband came back and so we decided to go to an expert.

My father in law took us to a Govt. Hospital and there I met an ENT. He advised us to go for an M.R.I scan, which revealed that my cochlea had been damaged and I was suffering from a genetic disorder so nothing could be done. It was a severe case and so, the doctor advised us to go for a cochlear implant.  I was trying to lip read and understand the sign language so I could figure out what was being said.

When I was explained about the process of getting a cochlear implant, I got scared as it was a brain surgery

My family members suggested that I should  see  a few more doctors  and have their views and then decide what to do.

During this time my son who was only 3 yrs old, got locked by me in the  balcony as i couldn’t hear him  crying and I  went inside. For 2 hrs he was locked outside crying. I was damn scared at night and I searched the entire house looking for him. It was like hell for me. My landlord came up on hearing his crying and opened the balcony door and my son came running to me and we both cried a lot. That was a turning point in my life for me and I decided to go for Cochlear Implant.

My case being ontogenesis imperfect was so severe that no doctor was ready to touch it as there were 99% chances of failure. Upon going abroad too we found out that there too no doctor was willing to perform the operation.

We normally have this notion that the doctors in the government hospital are just like that so that made me twice as confused whether to go ahead with the surgery or not .But finally I decided to take a chance! Some tests like Bera and MRI were conducted and I was given a date on which I was to be operated on.

On 12 Nov 2004 early morning 6am, I was taken inside the operation theatre and to my utter surprise I saw cameras inside .

While I was wondering what was happening a team of 4-5 doctors came in and I was explained in sign language that they were from the company and they would be seeing my operation live and this would also be shown live at their research centre, as I was the first one in India to get a cochlear Implant and fifth one in the world.

I was feeling very happy about this when  suddenly the  doctors  said that they would increase the price of implant  as I’m an  adult . After several heated arguments, things finally settled down  and I was given anaesthesia at 8.30 am and the surgery started. It went on for 7-8 hrs. My cochlea was like kneaded dough with no bones and the nerves were all entangled but God had mercy on me and I finally got implanted. It was a big achievement for me and for the doctors. After one week I had a switch on. On the switch on day, my audiologist asked me whether I could hear something.

For me it was as if I was given a new life .I was listening to sounds again but with a different chord that I had never heard before.

Now it was time for therapy. As I went to my first class, the therapist said that it would take me a year or so to listen normally to which I was shocked. Every time I heard something, like piano keys or trumpet I was always like Oh my God! But I didn’t give up and I decided to fight on my own.

I started catching different sounds at home one by one for example, standing near the door bell and asking my kid to ring it for me.

It took me 3 months to stand before the world like normal adult catching sounds even from behind me. Wow! I was an achiever. People used to ask me ye ipod kaha se liye? And aap sun sakte ho sach mein? As at that, there were not many people who were aware about these surgeries.

It’s has been 12 years now. it was not an easy path for me but I won my struggle by  facing so much torture of being taunted or sympathised with  as if they really care for me. But now I give a hearty laugh at all this .For world I may be disabled but for me I’m a much better person. It  is actually my choice that when someone is taunting me , I have the power to switch off my implant and ignore all the non sense and tensions of  the world and as person I would also proudly refer to myself as having three ears.

The Moral I learnt:  we should make our own path and walk on it with pride and always have faith in God for this is what makes you stronger.

Best Wishes

Neeta Mehta Parashar