PART 1 - Click here for the original post - If I didn't use Avaz for my son ..
PART 2 - Click here to read the original Facebook post - Avaz is my Voice
PART 1 (reproduced below)
Avaz is my Voice.
#Long #Post #Alert
The feeling of having a voice and that's heard...
It was a very hot afternoon. I was lying in the sofa tired and lethargic after having a long drive in the traffic. I had all the symptoms of a sudden migraine attack. I told Siddhu to massage on my forehead and I hardly remember when I dozed off in between. Hearing the sound from iPad I woke up from the couch and Without opening my eyes I was scolding Siddhu for playing with Sivaas iPad. But to my surprise Instead of Siddhu I saw Sivaa standing in front of me with the iPad. Curiously I looked into the iPad and I was shocked. Sivaa had pressed the tea folder. I couldn't believe Myself... It was the first time he was initiating something through Avaz. He wanted Tea and snacks and it was already his tea time. I was so happy... My son got a voice... We three hugged each other and I don't know what all we did to celebrate that moment. I went straight to kitchen and made Tea for Sivaa. In between I was trying Anoop but he was not reachable. I couldn't control myself... I wished to speak to someone. First I thought I will call Smrithy and thank her but soon realized that she would in school. So I took my Whatsapp and send voice messages to Seema , Anita Chechi and Smrithy. They all were very excited and happy. It happened just two weeks after I attended Smrithy s session.
What's is Avaz and why did I choose that?
Avaz is an alternative augmentative communication tool for people who have communication and speech difficulty. Sivaa is minimally verbal or sometimes non verbal. I waited all these 10years expecting for a little improvement in his Speech but nothing worked out the way it should be. After his 9th birthday I happened to witness a lot of behavioural changes in him because of his communication difficulty. As age was progressing he was finding it difficult to communicate his needs and I was also not able to figure out what he was trying to convey other than his basic needs. After a while it started ending up in severe meltdowns every single day. Struggling a lot, finally after his 10th birthday, I thought of buying this app for Sivaa. Past one year he didn't show much progress as I was not well trained with using the app. After attending Smrithy s session last month, I learned to customize the app by deleting the unwanted folders. That was biggest takeaway for me and Sivaa.. When I removed the unwanted folders and added Google Images instead of symbols... Sivaa understood the concept of using it. After that there was no looking back... Sivaa started using it meaningfully. Now he is able to say his need for snacks, tea water etc and in the morning while giving breakfast if he need more he would communicate that through Avaz and when he feels like listening to music he would initiate that through the clicking the music folder... Another great thing is that he is able to answer yes or no questions meaningfully.. Last day I had a doubt whether Anoop had given his cough syrup in the morning. I thought of asking him through Avaz.. He correctly pointed out no Symbol. To clear my doubt I messaged Anoop and found that Sivaa was right. Yesterday when he clicked the folder "I want to talk to you through Avaz and Avaz is my Voice " I cried out loud feeling the utmost joy.... Yes... my son has got a voice...and finally he is talking to me...
How did the change happened in two weeks time?
As I told earlier I customized the app in such a way that it had all Google Images. Sivaa exposure to speech was only to verbal communication... We haven't tried any speech tools or other augmentative communication tools. His comphrension level was high and he was into TEACCH method at school and home. When my brother had gifted this iPad for Sivaa years back, I had downloaded a lot of educational apps for kids. And Sivaa was very well responding to it. That made me took the decision to finally try this app. Apart from all these I was consistently making him communicate through Avaz and that turned out to be a blessing. I made him understand that it's his voice and it will be heard by clicking that folder which is shown in the video below.
Positive things I have noted after using Avaz.
He began to engage himself meaningfully.
He believed that he is heard and he can talk to everyone which boosted his confidence level.
Socializing with all three of us. He made me believe that he too have choices.
Between Siddhu is the happiest person and he is trying to communicate with Sivaa through Avaz always. He would keep on ask him the very complex question.. chetta whom do you love the most ? Amma or Acha... And he would whisper to him to click Amma folder.. But Sivaa always touch the Acha folder making Siddhu sad...
Part 2 - Avaz is my Voice (reproduced below)
When I decided to buy Avaz for Sivaa, I had no choice left than to try this last option for my so called non verbal boy. I owe to Smrithy Rajesh for empowering parents like me who were actually struggling with communication difficulties of their children.
Smrithy Rajesh is a parent and special educator. You can reach her through
smrithyrajesh.blogspot.in
In this moment, when Sivaa started to use Avaz as a communication tool, I’m thinking how much I would have missed him and how little I would have understood about him, if I didn’t try Avaz for Sivaa
I would not have actually understood that Sivaa need a voice.
When I started customizing Avaz app, I used Siddhus sound for expressing some Malayalam words. But I was surprised to see that he wouldn’t answer or touch those folders as he has already recognized himself to a English child’s voice. By resonating to that English child he made it very clear that he wanted a sound different from three of us.
I would have taken him for granted.
He was very clear with his choices after we introduced Avaz. Earlier it was always Tea for Sivaa but now there are days where Sivaa would opt for Boost or Bournvita. Music was played only during music time but now he made me understand that he needs music whenever he has nothing to do. Last day he was not well and didn’t go to school, so he made me hear his playlists for 2 hours and I actually had to beg him to stop it. Video has been attached.
Through Avaz I learned to respect his dignity.
His choices are very abstract and very clear. He made me understand that ‘No’ is always a ‘No’ eventhough I’m his mother and he is my child. I usually say this to Siddhu but has never thought from his angle. When I expects my neuro typical to do something and if he says ‘No’ then that’s the end. I use all my powers and authority as a mother. But when Sivaa.. The neuro divergent and the one who taught me unconditional love started saying ‘No’ to my demands, I started respecting his dignity.
This para can be misinterpreted but I feel at times it’s okay for a child to say No, if parent knows to draw a line between what can be No and what cannot be No..
Avaz as a communication tool is creating a joyous and loving bond between us.
Last day I was talking to my neighbor and Sivaa knew that if she comes I would forget everything and spend hours chatting to her. He was quiet for the first 20minutes and after that he came with Avaz and tapped the sitting folder and too much sound folder two to three times. I soon quit the chit chat session and entered the house. It sounded like I’m sitting here and I could not withstand your loud sound. And on an another day my mother in law called me for a casual talk, hearing the phone bell, he ran from the other room with Avaz and tapped the clock folder. It was a reminder to check the time as it was nearing to his snacks time. So before the next warning bell, my poor mum in law, kept the phone saying let him be on time as always.
This shouldn’t be viewed as him an Authoritarian. All these are such happy moments where the mother is little over charged with emotions as her all those years muted child has a come up with a voice.
Without Avaz I would not have understood that there are actually days he wish not to do his favorite activity.
Earlier it was like everyday swimming for Sivaa irrespective of the climatic conditions thinking that it’s his favorite activity and he would love to do that at any time. But last week when Kerala was hit with heavy rains, he communicated through Avaz that he doesn’t feel like Swimming.
So Sivaa… My warrior… you take the lead.. I will follow you with a chalk in my hand thinking when and where to draw a line.
Regards
Preetha Anoop Menon