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My Life Journey With My Special Kid!

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

  1. Swethasri

    Swethasri Platinum IL'ite

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    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 :p,

    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.
     
    Last edited by a moderator: May 30, 2014
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  2. rajinitk4

    rajinitk4 IL Hall of Fame

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    Hugs to swethasri for being strong and continue to do so. All the best. Things will be fine soon.
     
  3. Dinny

    Dinny IL Hall of Fame

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    Swethasri

    Hats off to your patience.You 're the best mom :thumbsup:
    Hugs to your son.
    And thanks for sharing your story,I am sure many will take inspiration from you.
     
  4. Mahajanpragati

    Mahajanpragati Platinum IL'ite

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    Hugs to you .............
    I read a wonderful book by Martha Beck 'Expecting Adam 'about her decision to give birth to a child with Down Syndrome and anothone calld 'The Spark 'by Kristine Barnett about her autistic son..........I firmly believe that loving & dedicated mother is the biggest blessing any child ask for & as in your case its only your will power & believe I yourself which is helping you move forward.
     
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  5. Rakhii

    Rakhii Moderator IL Hall of Fame

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    I say, God must really love your son to give him to you, such a wonderful mother.
    Please do write about your everyday routine, everything you want here :)
     
  6. Saisakthi

    Saisakthi IL Hall of Fame

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    Sister Swethasri,

    SAIRAM,

    Great Hugs to you, Thanks to Sayee for keeping you strong and detached.

    While I had continued the quoted thread for sometime, this 2014 have been trailing through a tough journey, though I read regularly, but could not do justice to the thread, and was praying to Guru that I should hear from you, before I begin again.

    Oh!!! he has never denied my genuine prayers and you are here with this thread, Doesn't this give you more strength that Mahan Agasthiar and Guru Sayee are with you and it is the greatest blessing one could ever get, rather than the humans around, who are always negative vibes.

    Our prayers are always there for the gods gift owned by you alone, because Guru knows that you are the person deserving the Gift more to serve him through your son, Keep serving and the Lord will guide you.

    May Baba be with all of us always, SAIRAM

    Note: Right away I have commenced the thread again, Thanksgiving to Guru for bringing you IN, please be in touch.. Sister Swethasri, Yes I can feel the pain as I have travelled similar journey...
     
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  7. ramyanand

    ramyanand Silver IL'ite

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    I salute you!Iam sure your son will grow up to be a wonderful human being!
     
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  8. Swethasri

    Swethasri Platinum IL'ite

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    Thanks for the very first response. I really need this hugs and appreciation to move forward. I feel so good to see your response.Thanks

    Thanks for the positive words Dinny. I definitely want somebody to pat my shoulder and give me a positive push. Thanks.



    Pragati, Thanks so much for sharing the books name and also your positive words. I will look for these books in the library when i go next time.Thanks.


     
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  9. Swethasri

    Swethasri Platinum IL'ite

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    Thanks Rakhii. My boy is so sweet and he is very calm and very soft. I am so lucky to be his Mother. Thanks to God!

    SaiSakthi, Hugs to you! I am so happy to read your reply. Its really overwhelming and thank you so much for having me in your prayers. Aghasthiyar Maharishi is always with me and also my kula deivam and my Mother Prathyangira Devi. I am able to feel that in my everyday activity. I got goosebumps when i read your post. Thanks a lot again.

    Ramya, Thanks dear! Your words are very encouraging.


     
  10. Swethasri

    Swethasri Platinum IL'ite

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    So,today went very well. Mainly no shouting, no yelling.very relaxed day.Sent my boy to school in the morning. My little one woke up and then brushing and gave him a bath and then ask him to recite prayer slokams. had his breakfast then reading time with him. Then he wanted to watch cartoon so TV was on. I browsed little and watched Mahangalum Adisayangalum. I liked it a lot. So the day went just like that and the little one had a small nap. by 3.00 my Boy came from the school. I was checking his lunch bag and also the home log. His day was Great at school and he cooperated with all of the activities.

    I asked him "you want to sleep" he brought his pillow and his blanket to the couch and said "SLEEP". I also had a small nap with him. I got up and prepared the dinner. We all went to ymca spent sometime and came back had dinner, now both my boys are in the bed!

    In the evening I spoke to one of my friend from the Dual Diagnosis group and she was very kind enough to talk to me about how we have to get things done in this country and she gave lot of confidence that everything will be OK. She has a older kid with dual diagnosis so she is guiding us in a right path. I am so happy to keep in touch with her.

    And also i wanted to talk about my Boy's potty training in this post. He is partially trained like if he wants to go to bathroom he will directly go the bathroom do pee or poop but he does not know to wipe or wash.so this is at home but if he is outside home then he will do gestures or show some frustration so my first question is "you want to go to bathroom" So next I am thinking to teach him to wipe with a flush able wipes.

    School in this town is really tricky. They are trying to stop Physical Therapy because he is able to access school building and also they are reducing the speech therapy so we have drs appointment for PT/OT and Speech to get their recommendations. Also looking for home based ABA therapy from the school because my insurance is not supporting that. Anyways we have lot of appointments in March so let me see how it goes with the school. I am waiting for the draft IEP so once i get that i will come to know exactly what services they are providing and where they are reducing.

    Thanks ladies for all your support!
     
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