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Parent's Experience

I live in UK and we special parents meet up on coffee mornings arranged by local health professionals who help the children with diagnosis of autism. Our guest speakers for this month is a family who has a 23 year old son who has autism diagnosis. They brought their son's pictures when he was young and recent etc.,. When they had diagnosis for their son, there was not much therapies and not much support group etc., He was non-verbal up until 6 yrs and he speaks very limited now as well. He has 2 sisters, one elder and one younger. He had been very hard work initially as loads of tantrums, meltdowns, sensory issues, aggressiveness and obsessiveness etc., Both mum and dad, never speak in front of him about his disability and kept the house rules same for all 3 children but had gone through the night mares of how he will be when he is grown up, what he will do etc.,But they kept it together as a family and had only speech therapy for their son, no ABA, no bio-medical and not any alternative therapies too.

He has studied in special school, went to college for 4 years in that 2 years computing courses. He has applied for his own job and attended interview without telling parents and got the job then informed them. He has got driving licence!!!!! UK driving licence is one of the hardest to get as minimum 150-200 hours training needed to get license. He himself asked the parents about the driving, they were so scared about it but gave a try. He is doing a cleaning job in a school, he chose that because he doesn't need to speak a lot to the people. He is earning his own money and can cook, look after himself. As he is so smart looking, girls approached him asking him phone number in college, but he told them that he can not give the number. Ha ha. But there is a girl who is persistent and approached the family, they are going out now for last two months. So mother said that there is a possibility that he will settle down with his own family too. 

We may be reading this kind of story every day in the internet but seeing somebody who had gone through it in person has boosted my confidence and belief enormously.

What else you need other than having a confident child who can be an asset to this world and take care of themselves. How many abled lazy people doing destruction in the world and getting the benefits from the government without going to job.

We have so many therapies now, so much knowledge in this field, inclusive schools and endless kind hearted parents coming together and helping each other. We all have light at the end of tunnel. My son surprises me every single day that he knows more than that what I am thinking that he knows. If we treat them as normal, expect high and give them some space like what we do with so called 'typical' children then they get the chance to be a 'typical' child as well.
by Kasthuri Subramanian

Pictures for communication

A picture says a thousand words. Yes, that is very true in the case of my son. Being a visual thinker he can understand anything very easily if it is in the form of picture.
Here I want to say an interesting story which happened when he was 2 years old. One day when we took him out for some shopping, he was playing near the parking lot. Suddenly he went near to a shop, looked up and saw something, then ran towards a nearby sign board on the platform and looked it up. The running became like a loop. We parents were little confused and not able to understand what exactly he was interested in. So we followed him and found that the nearby sign board also had the name of the same shop he was running to. He has been comparing the sign board on the platform with the board above the shop, as the same brand names in same styles were present in both places. This was before he knew to read any alphabets or speak.
Today I teach him everything by matching pictures even after he started to verbalize. However when we started it was challenging. Using pictures for communication would mean he has to request for something by giving a picture, for e.g. give milk picture (picture of milk in a sipper) to get milk. Initially this was little difficult and he was not able to get it easily. I will now go into full details of how I made it happen.
Again I listed down his interests. E.g. visiting shopping mall, drinking milk etc… I found he needs milk immediately after he got up from the bed. So I put a milk picture card near his pillow. Around his waking time one of us would be near to him and other person would be in the kitchen with milk ready. Once he got up I gave him the picture card without saying anything and made him to walk straight to kitchen and made him to give it to his dad. His dad would immediately give the milk sipper to him and he would walk away happily. We did this for some days like ritual hoping he could understand the concept one day.
I also made some picture cards of his interest like snacks, water, Mc Donalds, Shopping mall, park etc. and put it in places where he can access easily(like sticking pictures with Velcro in Fridge doors). One evening suddenly he rushed to the place of picture cards and handed over a picture to us. To our surprise it was Mc Donalds picture. Immediately we rushed him to Mc Donalds as a reward. When we shared to the experience to our speech therapist, she was delighted with our son’s progress and appreciated our effort to immediately reward him. She said you could have run even in your night dress. It was worth it. Yes that was true
Also soon he started using the milk picture card for requesting milk
Before he started to verbalize I used pictures for communication a lot with my son. Initially if we took him to places like park, shopping mall he was not able to associate it with picture. So I took photos of the particular place and used it as picture card. Before we start from home I showed him the picture card (say Park Picture) and tell him “Park”. I did not speak big sentences like “we are going to park”. This was to ensure he did not get confused with too many words and focused only on the key word “Park”.
Once I reached the park also I flashed the picture card once again and said “Park”. Like the milk and park examples, I used different approaches for different situations.
Pictures have been the wonderful first step in my son’s communication. Other babies communicate to mothers from the time they are born by crying for milk, food, experimenting little words as they grow up etc. But we missed all these phases for my son. But because his strength was visual, I got that phase again as he tried to communicate as much as possible with pictures. I had a huge list of photographs and pictures which were generally from his interest areas and he happily started using these to tell us what he wanted. Soon I was able to tap this picture communication to speech as well.
Tips
  1. Keep a set of pictures in your handbag, child’s bag, in your vehicle etc.
  2. I initially used photographs
  3. I also added words along with pictures. For e.g. Park Picture + “PARK” word at the bottom of this picture
  4. I faded out those pictures where he became comfortable with words. So no problem for generalization
  5. You can even have a set of pictures in your mobile.

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Extend Stress-pause-fill ups in the day to day routine

In the topic “How I made my child speak using Nursery Rhymes” I explained how I used the stresses and pauses to encourage my child to recite the Nursery Rhymes. Here I am going to explain how I adopted the same method for the day to day routines. That is to make him learn words that are used in day to day routines.
To accomplish this I observed the day to day routines he was used to at that point of time. I also tried to segregate the routines he was very interested or liked very much. Some examples are taking bath, drinking milk, going to park, saying bye bye to his dad when my husband leaves to office, watching me cook etc. All these were his favourite routines.
To start with I selected some 10 to 15 routines the way I have mentioned above and made some standard phrases for each routine like
  1. Daddy bye bye
  2. Let’s go Park
  3. Mamma is cooking
  4. I want milk
Whenever the routine happened, I kept mentioning the phrases and also flashed a relevant picture card. It could be the picture of a park or the picture of his sipper from which he used to drink the milk. After some time when that routine was about to happen, I just flashed the card, said part of the phrase like “I want….”. If he missed to say the word, I prompted him or filled it by the correct word “Milk” and proceeded with the routine. In course of time he started saying the word and eventually the full phrase. I also gradually faded the flash card.
I list down some examples
  1. Mamma is “Cooking”(Asked when what was I cooking)
  2. daddy is “Eating”
  3. You are “Eating”
  4. Mamma is “Eating”
  5. Mamma is “Cutting”(Asked when I used to cut the vegetables.
Since above actions are routines and I asked while it was happening, my son picked up very fast. This helped him to learn action words in later. And also he generalised without any problem.
Since my goals are very close to the day to day routines, it helped me to prepare him for the routine also.
I applied the same thing for Body Part also. After my son learnt parts of the body I took targets like
  1. you see with your “eyes” etc.
Then the objects like
  1. you write with “pen”
  2. You play with “ball” etc.
In this way I taught lots of words to him.
Tips
  1. In the beginning instead of “you”(you are going to “brush”). We can use the child's name also
  2. If the targets are close to the day to day routine the child will benefit a lot. Please ask the child only during the time of action. Don't confuse the child with same target during the Table top activity time. Keep separate list for that.
  3. Give the list to other family members.

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How I changed my son's gesture into words


My son was non-verbal till he was 3.5 years old and he communicated with me by lifting my hands to point something like snacks, water etc. He came to me only for the snack items and other things did not matter to him at that point of time. I was 100% sure that he would come to me at least for something he wanted.
Whenever he came to me and did the gesture of lifting my hand to point at something, I gave a word to his gesture. For e.g. He pushed my hands trying to point at the chocolate box at a top shelf that he could see but could not reach. At that time I said Chocolate and gave a chocolate immediately. I didn't expect him to say Chocolate, since it was a very big word to him. Slowly he started to make some sound for chocolate but not chocolate correctly. So then onward if he requested with the sound for chocolate , immediately I picked up the chocolate box and gave one but I gave the correct pronunciation “chocolate” and gave the chocolate immediately. Slowly the sound for Chocolate became “Chocola” and then “Chocolate” later.
I have made a matrix of how it evolved
Stage
My son
Myself
Original gestural communication
Pushed my hand to point at something he wanted
I gave the object he wanted
Introduced giving a word for gesture
Pushed my hand to point at something he wanted
I said the word for the object he wanted and gave the object as well e.g. Chocolate or toy
After some time
Pushed my hand to point at something he wanted and gave some sound(e.g. "cha" for Chocolate or it could be any sound)
I gave an expression that I comprehended him and said the word(i.e. correct one) for what he wanted and gave the object
After some more time
Reduced pushing my hands and he started giving a sound which was closer to the original chocolate
Similar as above
At last
The words came much closer to the original “chocolate” and pushing my hands almost diminished
Gladly I gave the chocolate to him and just repeating the word for his memory and reference 
In all the above stages, whatever is the form of request at that stage, I used to give the reward immediately, so that he recognized that his efforts were bearing fruit.
I would like to mention one another classic example of my son's request by gesture and how I changed into a word. My son liked to play with “Bubbles”. I used to keep Bubbles bottle in a way that was reachable. Whenever he wanted he took it and gave it to me. Here I didn’t use any Question like what do you want? Or do you want bubbles etc. Since I knew very well he would give the bubbles bottle to me. I waited in the position that is on my knees so that I could able to reach his level and I would be able to establish eye contact with him. Even though the eye contact was very few seconds I used the opportunity and said the word “Bubbles”. This was just to get started and I will start blowing only when he made the request.
For making this request I made him to stand/sit in one place and I was little away from him. He initially made request by reaching out and touching my hands. I took that as a request and immediately said “Bubble” and blew the bubbles. After the bubbles came out, myself and my husband used to play with bubbles along with him like saying pop pop and poking at bubbles. After all it should be a jolly game so that he will request for more.
Once he popped all the bubbles, again he touched me; I gave him the word “bubbles” and blew bubbles. In a few days, he made some sound for bubbles like “ba” sound and he stopped touching gesture. Now I took the “ba” sound as the request. I heard that sound immediately I said the word “bubbles” and blew it for him. Eventually “Ba” became “Bubbles” on a good day.


Tips
  1. List down the words which your kids show interest/request. For e.g. my son requested for snacks by pointing snacks box, sandals for going out, tumbler for water and bubble bottle for playing with bubbles. Since above are his needs, I was able to convert them to words. The key here is to use our kid’s interest. Their motivation is what makes this possible and not our motivations.
  2. We can do this activity at anytime and anywhere even in the friend’s/relative's houses or public places. That is wherever the kids find their objects of interest.
  3. Also one additional thing that can be done along with introducing words is to do an action(like showing drinking water) or flashing a picture of the object he is requesting(you should have it made earlier and keep the picture ready at the appropriate place). This could be one another useful tool to shift away from gestures and a useful step before full speech(this never impedes speech, it only aids and helps)
  4. Give the list of your kid’s interests and appropriate words also to other family members.

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How I made my son speak through Nursery Rhymes

When we started the therapy for my son was 3.5 years old, he was just a “No No” baby meaning, the only verbal communication he had was being able to say “No”.

He also made few other sounds like “Ba” for bye bye but was consistent in using those sounds. Initially it was very very difficult to get his attention and he was very hyper too. I was really confused where to focus. That is on his speech, behavior or hyperness.

But something told me that if we improve his communication, then it would be easy to make him understand other things.

Along with the basic words for communication “Rhymes” helped him a lot to verbalize. He also liked to watch Rhyme Cds. It added to my advantage. I used it like a “reinforcer” or to grab his attention.

I selected some of his favorite rhymes songs from the CD and I used the same tune. The aim was to make the child to fill the word in the rhymes when we pause. Let us take for example, “Johnny Johnny yes papa rhymes”.

First I gave stress where I wanted my son to fill. For example, I stressed Yes papa and did not expect him to say Yes Papa. Since at that point of time, his only vocabulary was No, any phrase that I wanted to make him say was going to be a big task. So rather than expecting him to say something immediately, I kept stressing the phrases which I wanted him to say

Johnny Johnny Yes Papa
Eating Sugar No Papa
Telling Lies No Papa
Open your Mouth Ha Ha Ha

One day when I started the open your mouth he finished by saying “Ha Ha Ha”. Yes that was the first fruit of the Stress and the Pause. After that whenever I sang this song for him, I paused after, “Open your Mouth” and also occasionally paused and checked for “Yes Papa”. If he was not able to fill it I filled it immediately after the short pause and moved to the next sentence.

Since he knew to say “No” then he started to tell “No” but not “No Papa”. Slowly “Yes” was also added. Then slowly I just started the first word of the sentence like “Johnny” gave a quick pause, then “Eating”, pause again and so on. I waited for him to finish the next word in these pauses, but if he was unable to complete, I filled it for him. Slowly he started filling words here and there. Eventually with patience and persistence, he can now sing the whole song :)

Tips:
  1. Dont stick to one song as your child could get bored and uninvolved. Select 5 to 10 songs depending on your child's interest and keep shifting between them.
  2. Do actions along with singing like nodding your head for “Yes Papa” so that even if the child does not get the words immediately, he will first get the actions and start imitiating them. Those actions eventually become the words.
  3. The aim is to make the child to speak, not to master the song.
  4. Give the tunes, stresses and pauses to your other family members who interact with the child. This will help avoid any confusion to child and he can learn smoothly.

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Yes, We Are Different


AAKASH since it is difficult for you to accept the food taste and ambience of different restaurant, most of the time our car becomes the dining place. YES, WE ARE DIFFERENT.

Even in the family albums the pictures will be shaky and we will all be single, since one of us has to manage you. YES, WE ARE DIFFERENT.

With lots of planning, we go for a movie and all the three of us end up roaming in the lobby. YES, WE ARE DIFFERENT.

I have now forgotten the days when myself and your daddy did purchasing together. If we take you to shopping mall/to shop, you find those places like maze and you start roaming around in search of something. Finally with all energy exhausted we decide to shop separately. YES, WE ARE DIFFERENT.

If somebody asks me about the new shopping place at the next street, my answer will be No. But I know all your favorites like park, KFC, Mc Donalds, Café Coffee day, Cuppa in every corner of the city. YES, WE ARE DIFFERENT.

When I gave you haircut, nail cut and feed food, because of your screaming people around me comment that I don’t know to manage you and this is not the way to bring up the child. And also they say I am treating you differently. YES BECAUSE WE ARE DIFFERENT.

Despite all the above I have to share another positive side of my life.

YES AAKASH,
Because of you I learnt the meaning for “confidence”

Because of you I learnt the meaning for “patience”

Because of you I learnt the meaning for “Happiness”
(Yes whenever you cross a milestone, I realize that)

Because of you I learnt to drive car.

Because of you I am an avid book reader now.
(Reading happened in search of understanding about your difficulty)

Because of you I learnt to manage time

Because of you I developed “Out of Box thinking” skill

Because of your every second challenges , I am very active and now I am like a “GENIE”

I don’t know whether to cry or to laugh.

Never mind, I learnt a lot because of your difficulties. Thanks very much for being a good mentor to me.
Let’s learn and enjoy the world differently since you, me and dad are different.