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My Life Journey With My Special Kid!

Discussion in 'Schoolgoers & Teens' started by Swethasri, Feb 25, 2014.

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Mar 7, 2018 #691

Shanvy IL Hall of Fame

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@Mehana yes. some of these messages are soothing to the parent in us. the doubts and sleepless nights. it kind of makes you raise your hands to the gaurdian angel for guiding us, through whatever be the source..

not that i dont need to worry about him, it is just a testimony that we are in the right track.

Shanvy, Mar 7, 2018

Shanvy, Mar 7, 2018

#691

Swethasri and Laks09 like this.
Mar 8, 2018 #692

Rakhii Moderator IL Hall of Fame

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Swethasri said: ↑

Connecting with people is the best thing that I am doing to myself and to my soul! On a fine day, got to know a woman who is working on connecting Indian moms with special needs kids in our state to meet and greet and be friend which is very important especially when you stay away from your family in a different country. I am sharing her blog with her permission.

A New Beginning: Making of a village. A desi one
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How did 4 years go by since your first post? I remember it like yesterday. many hugs to you.

Rakhii, Mar 8, 2018

Rakhii, Mar 8, 2018

#692

Swethasri likes this.
Mar 9, 2018 #693

Swethasri Platinum IL'ite

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How beautiful is that, Shanthi!!!! There is nothing like someone pat our shoulders and say "you are doing a good job". I am so happy for you!!!!!!!

Shanvy said: ↑

@Swethasri , @Laks09 , @Mehana had to share this with you guys.. not as a brag just that things will fall into place someway.

i have made some wonderful friends from il who are now not here. some of them have been part of my tiring journey of the last 5 yrs of my yping man fighting more than i can discuss online (both physical and emotional)

now one of them is a wonderful teacher and loves kids and is also a mother of a in the spectrum kid and she visited me at home and by chance my young man came home to meet me(well that is how it is these days lol) and we all had fun even if it was just a little window..

the next day she sent me a message
“i am in awe of your young man, not because of where he has landed to study or his obsession with his chosen field but the wonderful gentleman that he has blossomed into, be proud s”

it was such a beautiful mesaage and has more weight coming from somebody who has not seen him but only heard of him for 12 yrs and the first meet she feels so.

validates the sleepless nights of trying to work at being better humans first and teaching him to be one..
Click to expand...

Swethasri, Mar 9, 2018

Swethasri, Mar 9, 2018

#693

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Mar 9, 2018 #694

Shanvy IL Hall of Fame

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thanks @Swethasri there is hope for all of us,and we will be there..!!!

Shanvy, Mar 9, 2018

Shanvy, Mar 9, 2018

#694

Swethasri likes this.
Mar 12, 2018 #695

Swethasri Platinum IL'ite

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Thats very true Rakhii! Time flies...I am so happy that I started this thread. Thankful to IL!!

Rakhii said: ↑

How did 4 years go by since your first post? I remember it like yesterday. many hugs to you.
Click to expand...

Swethasri, Mar 12, 2018

Swethasri, Mar 12, 2018

#695
Mar 15, 2018 #696

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Swethasri said: ↑

Editor's Note: Thank you Swethasri for sharing your story with us. It has been chosen as the Best of Forums and to celebrate Parent's Day at IL we have chosen to feature your story as an article here.

--------------------------------

Hi all ,

Hope you are all doing very good in the hands of God.

I wanted to share my life journey with my special kid who is with Down syndrome. Writing here is just like I am sharing everything to my Mother. You can call this as a vent or sharing or giving information about few things or teaching how your life will change after a Special gift given to you by god. Any questions, comments (Please avoid too much of negative comments) and want to share any kind of resources which would benefit others are very welcome. Thanks.

I got married to a very well dignified and educated family. It was an arranged marriage. My husband is very loving and caring person till date even after lot of challenges. Everything was fine for the first 2.5 months and then all kinds problems started like relatives interference from my side which leads to very bitter arguments. I got pregnant with my first child after 9 months of marriage. Even during my pregnancy lots of fights, disrespectful arguments, disagreements, insulting my husband, misunderstanding between me and my husband ........ unimaginable. Without my knowledge I was also part of it and many things hided to me by my maternal relatives. But whatever reason I give I lost that beautiful loving relationship with my husband which is awfully inconsolable even now...

So I delivered my boy and after 2 months he was diagnosed with down syndrome!!! Initial cry, non-acceptance, guilty and top of everything the fights and misunderstandings. In both of our family, we don't have anyone with intellectual impairment. My boy is the only one so we were in shock and all those initial stress....

So I joined my husband back to his place when my boy was 4 months and a pediatrician referred Early intervention. From there all kinds of struggle started. But I always thank God that he gave me a wonderful very special gift which many ladies praying who want a baby after 5 years, 10 years,15 years of marriage. I always thank Him what he gave me.

I learnt lot of things about the people, society, how they differently see my child and especially my relatives. I was in touch with them but somehow started getting away from them slowly. Reduced going to any kind of functions like marriages .....Gave high priority to my boy. I was like convincing myself, its all because of KARMA we have to face all these things. Anyways coming to my boy,he was delayed in all milestones like creeping, crawling, walking, ...when he was around 2 years we moved to United States. Again a life changing but in a positive way. Felt like God did not close all the doors. He opened this opportunity and we were able to breathe little from all congested extended families.

I am very very thankful to God that he gave me this opportunity as I always. So here in US till 3years old Early Intervention happened at home which means all the therapists come home and do the services. I do see a very big difference in the society. the awareness level is very high and people are very happy to welcome my boy and accept as a human being which gives me a very big relief. God heard all my prayers!

My boy completed 3 years then he started going to the public school and he was on 1:1 and also whatever therapies he was receiving in the EI continued in the school. He was doing pretty well in social, physical, but not very good in communication so he was continuously receiving Speech therapy.

I did small analysis about my relatives and at one point in time I completely disconnected my maternal and paternal relationship including my Parents. Some how I don't have any kind of regrets that I disconnected them. Because my husband was always with me as a very positive support. So I was relieved from one big stress by disconnecting them which I am completely out of guilty. I am happy that I did it!

So my boy slowly moving away from other kids and doesn't want to mingle with other kids. Started some kinds of repetitive behaviors. When we talked about it with the pediatrician they said its a down syndrome kind of behavior once he grow big then he will stop doing this. but he is not very much progressing also so we are complaining to the school about his less progress and asked them to increase the therapies and they kind heartedly agreed after a lot of advocate. But still he was delayed in speech in the level of 2 year old boy. But he is now 8 years old and still struggling in communication.

So very recently he was diagnosed with Autism so its a Dual Diagnosis! Another big challenge! That's why he is not progressing much and also his negative behaviors interrupting his academics and day to day skills.

So currently we are exploring more resources and trying to get help for my boy who can do his daily living normal to some extent. We moved to a different town and the school system is really pushing back and wants to reduce services. we need to advocate for more services because of his Dual diagnosis and he is still non-verbal. So its a struggle. Its not very easy to have a special child at the same time I do see many positive with my boy. His innocence, his smile no one can have. as a normal people we always cry for more even though we have million dollar but my boy or any special kid, he is non-verbal he don't criticize others, he don't hurt others, he don't bully others, he don't judge others, he don't gossip about others. At the end of the he is very happy and he makes me SMILE! from all of the stress. I am so happy to be a mom of my boy. He is so special to me.

I want to continue to write here how I deal with him everyday and how he is doing with his little brother and also how I am dealing with him. Everything so that other new mothers can benefit from here.

OMG such a big post! Thanks for reading ladies after this my posts will be very short. Share your thoughts. Thanks.
Click to expand...

Sometimes it only need a little extra understanding of the growing up child to give them the support they deserve,.. I am sure they are all are more scared than they look!

Reshgeorge, Mar 15, 2018

Reshgeorge, Mar 15, 2018

#696
Mar 22, 2018 #697

Swethasri Platinum IL'ite

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hello dearies, hope everything is going good at your end. My boy is doing good ..real good. 6th grade is going fine. he is learning a lot. his 1:1 is the best. learning spellings, addition, flash cards 45 words to picture and picture to words, spelling his first name. He is doing well with 2 piece puzzles, he starts with putting the shapes together and then learning the words which is wonderful!! He came a long way and I am so proud of him! Daily living is getting much much better. He is now able to hold water and able to shake his head for rinsing after brushing his teeth which is a big move. Taking shower is a big challenge now that I am focusing on which hopefully he will get there. folding clothes and putting away in his drawer is also getting much better but still working on sorting.

He is talking now!!!!!!!!!!! very meaningful functional talking. Words are coming out and much clear these days. Thank god!! Thanks to you all who keep my Boy in prayers. I am so lucky to be here.

me: we are going to speech and what are you going to work for?
my Boy: candy
me: candy and ??
my Boy: pretzel (with a big smile)
me: how many candy do you want?
my Boy: 3 (showing 3 fingers!!!!)
me:how many pretzel?
my Boy: 3 ))

After doing his exercise before going to bed...
me: how do you feel?
my Boy: tired
me: do you want to do more sit ups??
my Boy: NO
me: what are you going to do now ??
my Boy: sleeppp

Today is world down syndrome day! I am so so happy to have my BOY in my life! I am so proud of his achievements

Swethasri, Mar 22, 2018

Swethasri, Mar 22, 2018

#697

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Mar 22, 2018 #698

Shanvy IL Hall of Fame

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and i am proud of your hero and you and ofcourse your supportive family.

way to go. so happy for him..

Shanvy, Mar 22, 2018

Shanvy, Mar 22, 2018

#698

Swethasri likes this.
Mar 24, 2018 #699

Mathima Bronze IL'ite

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So happy for u and proud about ur hero.. Ways to go..

Mathima, Mar 24, 2018

Mathima, Mar 24, 2018

#699

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Mar 24, 2018 #700

Mathima Bronze IL'ite

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Swethasri said: ↑

hello dearies, hope everything is going good at your end. My boy is doing good ..real good. 6th grade is going fine. he is learning a lot. his 1:1 is the best. learning spellings, addition, flash cards 45 words to picture and picture to words, spelling his first name. He is doing well with 2 piece puzzles, he starts with putting the shapes together and then learning the words which is wonderful!! He came a long way and I am so proud of him! Daily living is getting much much better. He is now able to hold water and able to shake his head for rinsing after brushing his teeth which is a big move. Taking shower is a big challenge now that I am focusing on which hopefully he will get there. folding clothes and putting away in his drawer is also getting much better but still working on sorting.

He is talking now!!!!!!!!!!! very meaningful functional talking. Words are coming out and much clear these days. Thank god!! Thanks to you all who keep my Boy in prayers. I am so lucky to be here.

me: we are going to speech and what are you going to work for?
my Boy: candy
me: candy and ??
my Boy: pretzel (with a big smile)
me: how many candy do you want?
my Boy: 3 (showing 3 fingers!!!!)
me:how many pretzel?
my Boy: 3 ))

After doing his exercise before going to bed...
me: how do you feel?
my Boy: tired
me: do you want to do more sit ups??
my Boy: NO
me: what are you going to do now ??
my Boy: sleeppp

Today is world down syndrome day! I am so so happy to have my BOY in my life! I am so proud of his achievements
Click to expand...

So happy for u.. Proud of your hero.. Kudos..

Mathima, Mar 24, 2018

Mathima, Mar 24, 2018

#700

Swethasri likes this.

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