Yup, its me - Adi ! I recently had my 10th Birthday - on 2nd April. You all must be really surprised to see me write this. Lets just say - for one day of my life, God turned around and looked at me! And smiled and said - ok, for this day, I give you the power to compose your internal thoughts like any typical 10 year old would - and write. Like Cinderella, once the hour hand moves full circle, I will take it away.
Gosh, Life's tough ! So here I am hammering away at the keyboard.
2nd April. Yah, Yah, I know - its the international day for Autism. What do they call it - Irony, correct? I am beginning to understand that it is what I have and it is what makes me different in many ways from a lot of other kids I see. Like those playing baseball in the Little League or basketball after school when I am shuttling between therapy classes. Ok, I don't know how to swing a bat or strike someone out. I get it.... But come down to the pool at the Y and try floating in 10 feet water in almost vertical position. With my 90 lb weight, I do it with eyes closed. I know my dad cannot. I see his head go under water every time he tries to swim on his back. I don't. Water is my friend. !Its neutral - so it has no preference for typical or autistic, black or white.
So I need to write something about my life here. I have a lot to say - but when I want to, damn it (sorry mom - no swear words !!) - the words they just don't come. Like they do for my darling sis Trisha who is speaking about 300 words per day. Hey you up there - know this - I am trying. I am trying so hard. Been trying since 2005. Give me a break if you can ! Like - let me say just about 10 sentences. Starting with - I love you Ma. I love you Dad. I know I am not what you expected - but thanks for making me a son in every way.
And when you get impatient with me - please hold on !! Dont give up on me. I don't. Hope is my most precious possession and I guess it is yours as well.
And the bit about not like you...that's just in some aspects.
Like you - I too feel pain, I too need love, I too love music. And ice cream !
I know that you do a lot of things . But how many are you really good at? On the other hand, there are far fewer things that I understand and can work out. But what I can do, I do better than most people. Like swimming. Like running up crazy Wii scores in Bowling. Like making entire boxes of ice cream disappear in 1 day.
Somewhere in this world, in this magical valhalla that we call life, there is a space for me as well. God made me - and so that cannot be wrong. So take me as I am. Accept me the way I look and gesture. No favors - just understanding. For I do - I understand that I am different and so much more denied that many others are. But I also understand that maybe that's how God meant it this time around - and that's how I need to live. So be my friend. Hold my hand. Show me the sunsets. I understand - even though I do not respond the way you want me to. If life was a box of colors - consider me as Indigo. Does not stand a chance in popularity to the red or blue or green. But without me, you would not have the rainbow. Or white.
Gosh, Life's tough ! So here I am hammering away at the keyboard.
2nd April. Yah, Yah, I know - its the international day for Autism. What do they call it - Irony, correct? I am beginning to understand that it is what I have and it is what makes me different in many ways from a lot of other kids I see. Like those playing baseball in the Little League or basketball after school when I am shuttling between therapy classes. Ok, I don't know how to swing a bat or strike someone out. I get it.... But come down to the pool at the Y and try floating in 10 feet water in almost vertical position. With my 90 lb weight, I do it with eyes closed. I know my dad cannot. I see his head go under water every time he tries to swim on his back. I don't. Water is my friend. !Its neutral - so it has no preference for typical or autistic, black or white.
So I need to write something about my life here. I have a lot to say - but when I want to, damn it (sorry mom - no swear words !!) - the words they just don't come. Like they do for my darling sis Trisha who is speaking about 300 words per day. Hey you up there - know this - I am trying. I am trying so hard. Been trying since 2005. Give me a break if you can ! Like - let me say just about 10 sentences. Starting with - I love you Ma. I love you Dad. I know I am not what you expected - but thanks for making me a son in every way.
And when you get impatient with me - please hold on !! Dont give up on me. I don't. Hope is my most precious possession and I guess it is yours as well.
And the bit about not like you...that's just in some aspects.
Like you - I too feel pain, I too need love, I too love music. And ice cream !
I know that you do a lot of things . But how many are you really good at? On the other hand, there are far fewer things that I understand and can work out. But what I can do, I do better than most people. Like swimming. Like running up crazy Wii scores in Bowling. Like making entire boxes of ice cream disappear in 1 day.
Somewhere in this world, in this magical valhalla that we call life, there is a space for me as well. God made me - and so that cannot be wrong. So take me as I am. Accept me the way I look and gesture. No favors - just understanding. For I do - I understand that I am different and so much more denied that many others are. But I also understand that maybe that's how God meant it this time around - and that's how I need to live. So be my friend. Hold my hand. Show me the sunsets. I understand - even though I do not respond the way you want me to. If life was a box of colors - consider me as Indigo. Does not stand a chance in popularity to the red or blue or green. But without me, you would not have the rainbow. Or white.
I just found out this blog today and i am loving reading it. My son has Autistic traits and full assessment is pending. So we don't know exactly what is going on with him. But being an over scared and sleepless Indian mom i am finding this information very useful. Adi, you are a wonderful, strong boy. You have wonderful family. I have never met any one of you but the half an hour i spent reading this blog gave me a pretty good idea about your family. I wish you good luck and all happiness to you and your beautiful family.
ReplyDeleteThank you for your kind words and wish your family lots of happiness. Your handle Happymommy leads the way !
ReplyDeleteThe purpose of this blog is to share experiences and learnings with those who may read it in the hope that it may help in a little way in their journeys. Autism remains an area where learnings and directions are largely empirical and experiment based. But some consistent facts are beginning to emerge and shape avenues.
My son got diagnosed at the age of 3, but we were late in this. His traits appeared much earlier - and we did not know what they meant - believing more in conventional Indian wisdom of boys speaking later and responding to commands later et al... These days, reliable diagnosis can be made within 18 months enabling the therapies to start much earlier, which increases the benefits significantly. Please let me know if I can be of help in any way in terms of sharing information.
Thank your for your kind words, i need them. Coming to us its been a roller coaster ride so far. I went to India for a long vacation when my son was around 2 years. Only after going to India i realized that his speech is delayed. But everyone told me that the boys are late. So i wasted another 4 months believing that. But my sister observed that my son was not responding when his name was called and was very sensitive to touch by strangers. She suggested i should see a dr. So i went to see a Dr in India and i heard the word 'Autisn' for the first time in my life and broke into tears right then. He asked me to comeback for a detailed assessment and i went back. After that he said my son has mild autism which can be treated in 1.5 to 2 years with therapies. He also gave some medication which i used for 2 or 3 days and stopped since they made my son very sleepy. So i spent another month in India not knowing weather to go come back to US or stay in India. Finally i decided to come back and after coming here so far we have done 3 assessments. one with the Psychiatrist , one with the Regional center, and one with the Developmental pediatrician. So far all three of them ruled out autism but said he has traits of it but not full syndrome. They also suggested to get reevaluated around 3 years of age. They all suggested that he should go for ABA, Speech therapy and OT.
ReplyDeleteI have started his speech. OT and ABA will start soon.
We have one side this Indian dr who said he has autism and these US dr's who says he doesnt have it but also suggests all kinds of therapies. We are in a total confused state.
But weather he has it or not he is our dear son. Our love for him will not change based on the diagnosis. As we go through this tough phase of life i always remind myself of a very favorite quote of mine, "Love those the most that needed it the most".
You are doing the right thing and i couldn't appreciate you more for the love and care you are showing not only to your son but the idea of starting a blog to help other parents. Kudos to you. You and your family is always in my prayers and so are other kids with Autism that struggle everyday in life.
God bless your family!
I completely understand and have moved through the same phase as well =. The important thing is to start - and a combination of ABA, Speech and OT is ideal. Autism is a broad spectrum of disabilities and challenges of varied measures. For example - initially Adi had challenges in fine motor co-ordination but soon overcame them through OT and we have stopped that after some years - swimming gives him all the OT that he needs. Speech and ABA based home skills development is now the focus.
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ReplyDeleteThank you for your kind words - and God bless your beautiful child and his parents and relatives as well. It has been very aptly put by Happy Mommy above - Love those the most who need it the most. They will need 2 times the love as a typical child does. As they grow, you will see how sensitive they are to your change of tone, voice and so on. Sometimes their dependence on you is overwhelming. With reference to God - this is what I think at times - God, in his infinite wisdom, created people of different abilities, personalities and traits. In which, he created some who need more support, care, patience and love than others And then he decided to put them under the care of those who had that ability to provide that support, care, patience and love - for whom not providing these would not be an option. There is a saying in my native Bengali - Jar Shoy, Tar Hoy - meaning "it happens to those who can bear it". God bless.
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