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My Life Journey With My Special Kid!

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

  1. zainabsarfraz

    zainabsarfraz Platinum IL'ite

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    swethasri,

    You are so strong and have immence patience so god has given his gift to the right person who can take care of it with love. I salute you with all my heart, may god bless you both and help your child to improve.

    you are a super mommy, hugs hugs and many hugs to you both.
     
  2. Vijaya@17

    Vijaya@17 Silver IL'ite

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    May dear God give enough strength and will power to take care of your special kid, appreciate your courage to share with virtual friends
     
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  3. helpmeangel

    helpmeangel Platinum IL'ite

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    Swetha,

    Hats off to your patience dear..God will reward you well for this..take care.
     
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  4. Lavanya30

    Lavanya30 Silver IL'ite

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    Dear Swetha,

    You are a wonderful mother. I shall pray to God that he blesses your little prince with a wonderful, healthy and happy life ahead.

    Cheers
    Lavanya
     
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  5. Laks09

    Laks09 Moderator Staff Member IL Hall of Fame

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    Swethasri,
    Hugs to you. My trials and tribulations with an autistic preemie toddler seems so trivial when I googled up the dual diagnosis. I didn't even know it existed until your post.
    You must have read that poem in circulation about special needs parents time and again and probably know by heart every line authored by now. It's definitely true. God does give special babies to special moms and dads. Those people, he knows, has what it takes to raise these kids.

    Insurance et al, are things that all parents dealing with ASD have going on. I don't have cover for my DSs ABA therapy either. I too ran from pillar to post, fought with insurance, DH took it up with his employer, went to the school district and finally decided on private therapy since it was too late for EI and early childhood in my city does not have ABA therapy. They do have group speech and PT but were not keen on exploring ABA options for any of the autistic kids there. Regardless, we had to start therapy because his Dev ped felt that he is still within the window where we can see marked changes. I'm going a very less travelled route of private Montessori with one-one ABA and speech therapies outside of school. I do see improvements with ABA. Since we had a positive experience with the therapy, we are going to start shadow therapy in school(which the school thankfully is cooperative about). All the unknowns aside, like your DS, my son is a precious little guy. He lights up our lives. His sister tells me she is so lucky that he is around.

    Btw, for autism, a friend saw dramatic improvement with a gluten free casein free diet. I'm not sure if you've heard of it or are interested but couple of moms told me it works wonders. I'm not doing it just because my son has a limited diet as it is and eats very few food items. I didn't want to give up on dairy and gluten now. Do research that.

    Getting the autism diagnosis is tough but once you have the diagnosis, therapies etc will become routine for you. I had to fight for my DS's diagnosis. Now I'm better off because I know what's wrong and can fix it.

    I hope you find the right help for your DS! I do think that communication issues can be resolved to a great extent with therapy tailored for autism. Your DS is lucky to have you. I love your positivity!
     
    Last edited: Feb 28, 2014
    Giri12, AbhiSing, Kamla and 4 others like this.
  6. breeze01

    breeze01 Platinum IL'ite

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    you go mom............. you are doing a very wonderful job..... your son is very lucky to have you............
     
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  7. Swethasri

    Swethasri Platinum IL'ite

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    Both kids are sick. My Boy is getting better but the little one got ear infection. So unable to get in touch with the computer.

    Laks, Thanks so much for sharing. Its really frustrating sometimes when i think about how the system works here. can i ask you where do you live? We dont know when we will come back to India so i am exploring the services in Bangalore. If you have any information regarding school, speech, and ABA please let me know.

    I want to share some resource which is available in Massachusetts(MA). MA is suppose to be the best state for special education in US. But i do see lot of things has a very long procedure with months together waiting with bundles and bundles of paper work which is frustrating.

    So once your enter MA with a child with Disability, if your child is under 3 then go for Early Intervention. If the child is above 3 then you keep all the records ready and with the help of pediatrician recommendations and evaluations start sending the child to public school. Get maximum therapies and services from the school because its free. And also schools are limited to funding to get therapies if they reduce any therapies which your child deserve, get an advocate and get all the services your child needs in the IEP, because IEP is a legal document! Join the specific disability parent group which is very very important so that you will know what the other parents are doing for their child and also will get to know the resources available.

    Then you apply for the MASS HEALTH insurance even though you have your primary insurance from your employer. you may not approved if your income level is high but you may get approved because of the disability. Mass Health gives lot of other services like Personal care assistant, transportation for doctor appointment, Respite care and other services. Also apply for Department of Developmental services for funding for advocates and Respite care according to your priority. but DDS services are very limited and they will give you lot of information about resources available for your specific situation.To get everything in hand will take easily 6-8 months but its worth getting them.

    It is not very easy to get things done but once you get involved and have everything in hand then its very easy to access the resources because many doors will be open for you.

    I am happy to share any information regarding how to get through it. I am also still learning how the system is working here but whatever information i get i will definitely write here.
     
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  8. Laks09

    Laks09 Moderator Staff Member IL Hall of Fame

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    Swethasri,
    hope your kids get better soon.
    I'm currently in the US. I missed the EI window. My son was diagnosed right around his third b'day. He was already in a private school and we decided to continue there rather than pull him out and put him in the ECS program. His therapists and doctors were all of the idea that its better for him in his current set up since he is already well adjusted there.
    I have a friend with a 3.5 yrs old. I know the pain of getting started with ECS for her. It's been months and she is still to get her Iep done. It's a slow process.
    Btw, main reason I didn't go for ECS was because here ECS does not fund one-one therapies. It's only group sessions and they still don't provide ABA therapy(God knows why). My son was already in private speech therapy. He now goes for private ABA therapy. Soon, he will start some therapy in school.
    Unfortunately, our insurance doesn't cover therapies for ASD and we don't qualify for the tx state health plans(income limit is way too low here to qualify for state funded plans). So we pay for everything :(.

    I need to tell my friend about the advocate. She is going to discuss Iep today. I never knew that. Thanks for letting me know.

    Btw, regarding Bangalore. I looked at that option but just decided to postpone my return since I want to see some therapy results. My son was born there so I have all the information for Dev peds and other things. Therapies are available. I may try some out over summer if I go for the entire summer. I'm still exploring that option. I'll let you know how it goes. Half the time I want to go back and start there but then everyone I know has asked me to stay put. Level of acceptance in Indian schools is definitely not as much as here. I don't know if it is a better decision to stay but definitely the easier option. Plus I've lived for a long time here so it's second home for me anyway!
     
    Last edited: Mar 3, 2014
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  9. Swethasri

    Swethasri Platinum IL'ite

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    Your friends suggestions are correct but it all depends on everyone family situation. its really painful to pay everything out of your pocket. Could you please explain me what is ECS. i have never heard about it. For the state health you might be qualify for disability. You can give it a try. Are you getting Home based ABA or you are taking you son to the ABA center? Because Home based ABA is very expensive iam just wondering how you are managing? you shd explore more and get into the parent group. Try to speak with American parents. My big mistake was i was with the Indian parents. once i expanded my contacts and groups i came to know so many things available. So try to explore more.
     
  10. priya4raj

    priya4raj Silver IL'ite

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    Dear shwetha,
    I must say that your son is blessed and as you said, you have lived up to deplete your KARMA, and you are saving goodness for your son.. God bless you!!
    Love and hugs,
    priya
     
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