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DS diagnosed with Autism

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  1. #1
    Louisette
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    DS diagnosed with Autism

    Hunter was seen yesterday by a Pediatric Neurologist because I knew something just wasn't right. Everyone else (including the therapists with EI) told me the things I picked up on were normal, the pediatrician agreed as well. I do know that Hunter was loosing the few words he did say (and that's w/ speech therapy) had some slightly odd manerisms that probably no one else other than me (and the **** neurologist) would have picked out. He has a high tolerance to pain, he comes and takes my hand when he wants something, walks on his toes at times, cuping his ears with his hands at times, though not often, staring from an unusual angle, and the drooling. There is more but what's the point. When the diagnosis of Autism was brought up, I just had no idea that's what it was going to be. I was in total shock. I couldn't even remember how to get home at one point, and had to pull the car over.

    My heart is breaking for both him and myself. Being selfish here: I can't get a break. Within the last 2 1/2 years I've lost 2 children, then one parent and then the other and now Hunter diagnosis. I'm so afraid of what the future will bring for him. And being a Single Parent by Choice isn't helping me to deal with this any better right now. My family is call over the U.S., and I can't remember the last time I got a babysitter. Who kows if I'll ever be able to get one now. I feel like my world is closing in on me and I can't control it. I have all crazy thoughts running through my head...who will (want to) take care of Hunter after I'm gone (not a sign that I'll endanger myself, just speculating), will he have friends to play with, will he be able to know I'm him still his Mommy. These thoughts in my head have been swimming around for 2 days now.

    The rational part of me know that all of this will be taken care of and with this early diagnosis, we are off to a great start considering Autism is usually diagnosed at around 2 1/2 years old. And at just 20 months, we are ahead of the game. We have some tests to get done at the hospital since they think this is related to Fragile X Syndrome. Basically, my father passed this to me and I passed it to Hunter. He laso has to have and MRI (sedated) and EEG (sedated) and genetic studies done. Well I guess this has made my decision to have another child go right out the window!

    Thanks for listening to my pitty party. And I haven't even focused on Hunter yet!


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  3. #2
    dutchgirl
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    Lynn

    I am so sorry for all that you have been through - it certainly doesn't sound like you've had an easy time of things that's for sure. I don't know a lot about autism but am glad you found out about it this early on. At least this way you know what you are up against. You sound like you need a break and I wish I lived closer to you so I could watch Hunter for you so you could have a day off/night out. Other than that, all I can do is tell you that we are here for you whenever you need to vent. I hope that everything goes well with the testing and that you get some answers. Sending you great big hugs!!!
    Lisa
    My three sweet miracles
    DS = the big 8!
    DD = 6...going on 16
    DS = just shy of TWO!


  4. #3
    virga
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    I am so sorry for all you are having to deal with. I wish I had some words of comfort for you. I can only imagine what must be spinning around in your head. I'm glad that Hunter got an early diagnosis and hopefully it will make all the difference. Like Lisa said, we are here to listen. Please know that you can vent whenever it's needed.

    Mom to ~
    Daughter 8/91; Son 5/01; Son 12/03; Son [born and returned] 8/07




  5. #4
    lrmc
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    Lynn,
    Hugs to both of you.

    What I remember about Autism from psychology in college is that with intense training a child can go on to have a nearly normal life. In a film that was shown in class, there was an experiment in the 50's or 60's with young children. They were given very intense training and behavoir modifacation. It worked, however, the training only lasted for a year or so and was stopped. Of the two children in the original study, one was in a hospital and the other who recieved more training was in an assisted living home.
    They also showed a young boy about 12 who had also be trained and he was in reg. school with friends. I wish I could remember more about the film such as the name.

    Lisa


  6. #5
    DDVMM
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    Lynn

    I am so sorry about this and quite shocked. Are you considering a second opinion? I wish we were closer so I could watch Hunter for you! If you are ever in NJ let me know. Being a single mom must be so hard, but I have always felt from your posts that you are an extremely strong woman. I hope that you can get some more answers soon so you know what needs to be done to help Hunter the best. ((((HUGS)))))
    Please keep us updated and know that we are here to support you!!!
    DD 9/99 DD 3/01 DS 12/03 DD 7/08
    Thyroid Cancer SurvivorSurvivingSTRONG!!


  7. #6
    rchatter
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    Lynn,

    His diagonsis must be really hard to digest but you should still get a second opinion. With therapy and diet changes, there seems alot of help for autistic children these days. You seem to a very pro-active mommy, so you are going to do great in finding all the help you can find.

    BC-CathyNY also now lives in NY (Westchester County) - isn't that where you live? You might ask where she takes her son for therapy. I am sure you have lurked already on the Autism board on FT. Hope you can take advantage of their wisdom.

    Good luck.
    Rita

    Sanjay (7)
    Alex (5)


  8. #7
    MarieL
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    I'm so sorry to hear of the diagnosis. Please be kind to yourself right now. It's a bit shocking to hear that your "perfect" child isn't and very stressful.

    Give it time to sink in. Don't think too far in the future.

    And remember to breathe....
    Marie L, Mama to Marielle, 9 and Rico, 8
    Mom to cancer SURVIVOR!


  9. #8
    socalgal3
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    Lynn, My heart is with you during this time. I'm sorry about everything that has come your way as of late, including the news you just received about Hunter. It all must be overwhelming, but please do try and take it one day at a time. I know very little about autism, but recently a woman at my church who teaches children with autism reinforced that early diagnosis and intervention programs are the key, and Hunter is right in there…Many, many hugs to you and both!
    * DD born on 11/25/03
    * DD born on 7/6/06


  10. #9
    Basilissa
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    Lynn,
    I cannot imagine what you are going through right now. I'm just going to send my hugs.....


  11. #10
    MissCookie
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    Lynn many (((((((((((((((hugs)))))))))))))) to you! I know your news is hard to take but you are right that is totally positive that you have caught this so early. Hunter is stilll your same sweet boy but you are going to have different issues than most that you will have to face. It must be extra hard knowing that you will face them by yourself without a partner to lean on /vent to. Please know that we are hear for you and you are never "alone".


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