Mended Little Hearts Open Forum

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  • 1.  CHD and Autism

    Posted 03-31-2017 15:11
    I was wondering if anyone else has a child who along with their CHD has Autism?  My daughter Raygen, is 6 years old.  She was born with HLHS and has completed all 3 surgeries.  She is non verbal and completely g-tube fed.  Along with these issues she is autistic.  She is currently in ABA therapy and I just wanted other parents perspective on ABA and if they like the program or not.

    Thanks,

    Erin

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    Erin Due
    Onalaska WA
    (360) 978-6175
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  • 2.  RE: CHD and Autism

    Posted 04-02-2017 16:56
    Hey Erin, I am going to pose your question to some of our MLH coordinators to see if any of them have experience with ABA therapy.  I'll get back to you if anyone responds!

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    Mandy Sandkuhler
    Alpharetta GA
    (469) 888-3400
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  • 3.  RE: CHD and Autism

    Posted 04-05-2017 04:40
    Hi, I have 2 children on the spectrum. However, those 2 do not have CHD. 
    We have been using ABA therapy and have a BCBA therapist for going on, almost 8 years now. Feel free to PM me any questions you might have and I will be happy to answer what I know and what our experiences have been.

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    Teddy
    Mom to 4, one of which has a repaired right coronary artery w/intramural course.
    Central, PA
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    Original Message


  • 4.  RE: CHD and Autism

    Posted 04-07-2017 20:48
    Hi Erin, 

    My older son is 12 (not my heart kiddo) and has Autism we went through ABA with him at around 5. I can answer some questions if you have any, but my personal opinion is:

    It worked for "some" things and not so well for other things. If that makes sense. It's grueling and hard though. I kinda hated it. I felt like I was punishing him.

    I get the theory behind it and I do agree it worked in some ways. But we didn't see the amazing results they said we could/would. 

    If you don't mind answering: what specific goals for your daughter are they trying to reach using ABA?

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    Andrea Baer
    Director of Patient Advocacy
    Mended Hearts/Mended Little Hearts
    Grapeville PA
    7243967820
    Director of Patient Advocacy
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    Original Message


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