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Extremely OT: No longer a 'Special Needs' parent.

Discussion in 'PatsFans.com - Patriots Fan Forum' started by T-ShirtDynasty, May 17, 2006.

  1. T-ShirtDynasty

    T-ShirtDynasty Moderator

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    I gotta share with somebody, and so many of you are friends here.

    Three years ago my son, 2 at the time, was diagnosed as having "PDD-NOS" which is kind of a bullsquat diagnosis in my opinion, that stands for [SIZE=-1]Pervasive Developmental Disorder - Not Otherwise Specified[/SIZE]. I believe it means, 'we have no fricken' idea what's wrong with your kid'. Anyway, it's a sub-classification of Autism, with Autistic-like behaviors.

    The big deal was, at the time, the kid wasn't speaking and made no attempt to. So he was slapped with PDD-NOS label, and made eligible for a special developmental pre-school, in addition to the in-home speech therapy three times a week with a Speech Pathologist that he was already receiving.

    Just prior to his initial diagnosis as PDD-NOS, the Speech Pathologist had a full spectrum hearing eval done. (He HAD passed his newborn hearing test and well-baby check-up, etc..) The Hearing Eval and Timpanigram showed a 100% 'blockage' in one ear, and a 90% blockage in the other ear, with the most significant hearing loss in the high frequencies and low frequencies. This meant when you said his name, he turned his head because he could hear the mid-range, but it sounded like being underwater, without being able to hear the sibilance that makes the human language recognizable. And that's why he passed the very simplistic baby hearing tests. The kid was deaf! (And at this point had already developed a 200 word vocabulary in sign-language thanks to the Speech Pathologist.)

    Anyway, I disagreed with the diagnosis of PDD-NOS, and thought clearly it had to do with spending the first two years of his life deaf, without his parents knowing about it. I thought for sure, the speed with which he picked up sign-language, and used it to communicate with us showed there was nothing wrong with the brain. BUT, the diagnosis was necessary for this Developmental Pre-School that we all wanted him in, so I was told not to argue too much.

    Shortly after starting the school, we got the hearing cleared up... the Ear Nose & Throat Specialist spent two minutes with him before opting for surgery, the dreaded "Tubes" operation, which I thought was absurd. We ended up taking him to a Chiropractor (with me kicking and screaming and laughing my head off at the very idea that a Chriopractor could help my kids ears!) who put one hand on his neck and said "Oh my GOD!" Worse neck on a child he ever felt, and believed it had to be related to the hearing. I was VERY very skeptical. He adjusted my kids neck and a week later the Timpanigram showed both ears were 100% clear. The ENT shook his head and tested him three more times. Then he passed his full-spectrum hearing test with flying colors and has been hearing fine ever since. But he was very, very behind, developmentally, where he should have been at that age, and the goal of the school was basically to catch him up (in my mind).

    Since the three years after fixing his hearing and attending full days at this Developmental Pre-School, and speech therapy three times a week, (and a lot of hard work at home with Mom & Dad) he went from far behind his 'age-appropriate' level in every skill, to catching up to age-appropriate, to surpassing it (and a 6-800 word sign-language vocabulary that we all still use around the house even though he speaks fine now). And slowly, the autistic-like behavior decreased and finally disappeared.

    In preparation for him being mainstreamed into regular kindergarten next year (!!!!!), we had the follow up evaluation done today by the Doctor that first diagnosed him with PDD-NOS. I was nervous as hell. About an hour and a half into him testing my son, he said he was going to put away the pre-school level stuff and move on to Kindergarten level "just to see how far he can keep going". We then moved on to First grade stuff. :) Apparently he blew away the pre-school level test and the Doctor couldn't believe it.

    When it was all done, he sat back with a big smile and said, 'Now I still have to actually score the thing, but honestly... I can't imagine there's any way I'm going to be able to give your son a diagnosis of any kind.' Just what we wanted to hear. He added, 'Other than damn bright, and very advanced for his age'.
    :rocker:

    So anyway, I officially have a 'normal' son, and he'll be starting normal kindergarten next year, and will graduate from his developmental pre-school in a couple of weeks (they do little caps and gowns and the works!). :) It's been five tough years with this kiddo, and I tell you what, I've got all the respect in the world for parents of 'challenging' or 'special-needs' kids or whatever you want to call them. I know I'm damn lucky that mine was only temporary.

    Sorry for the self-indulgent novella that had nothing to do with Ty Law. I'm just the happiest guy in the world right now and wanted to share with my Patsfans family. :D
  2. dryheat44

    dryheat44 Rookie

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    #75 Jersey

    Good to hear.

    I'm sure you'll never think ill of chiropracters again. One saved me from a life of around-the-clock pain about 10 years ago, and I never let anybody degrade a chiropracter around me.
  3. Willie55

    Willie55 Rookie

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    No reason to apologize at all. That is the best news I've heard in a very long time. I'm very happy for you T-Shirt.

    p.s. The kid's lucky he got your wife's intelligence.;)
  4. mgcolby

    mgcolby Woohoo, I'm a VIP!!! PatsFans.com Supporter

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    Congratulations T-Shirt. That is good news and I for one am happy for you your son and your family.
  5. jimmyjames

    jimmyjames Rookie

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    Unbelievable story, and sounds like you have a pretty amazing and bright kid at home. You should be very proud.
  6. T-ShirtDynasty

    T-ShirtDynasty Moderator

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    You can say that again. I've since had long discussions with him and respect the hell out of the guy. Treats the whole family now, and we love him. :) When my mother suggested taking my son to see him, I honestly laughed in her face. I've since apologized. :D


    And thanks for the kind words guys. :)
    Last edited: May 17, 2006
  7. arrellbee

    arrellbee Rookie

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    T-Shirt - I'm sure all are really happy for you and family - and especially the young guy !!

    My 2 year old grandson has profound hearing loss in one ear but 100% OK in the other. He has been slow with words but seems to be making very good progress now. The surprising thing for us is that he seems to be able to locate source of sounds - not sure how that works - maybe echoes or something.

    Our experience in this marvelous high-tech world of ours is that you better be able to diagnos a medical problem YOURSELF well enough to be able to find the right 'specialist'. Folks should really keep in mind experiences like yours and keep searching as diligently and as fast as possible to see if they can find a practitioner who indeed can help. You have to be especially careful of accepting treatments that are NOT improving a condition. My father-in-law lost a foot when his doctors treated him for gout instead of diagnosing a subtle nasty fracture that eventually caused run-away infection. 'nuf said.

    Anyway, thanks for sharing the great news !! Best wishes.
  8. Pats726

    Pats726 Rookie

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    That is a great story!!! Really...congrats!! And..to think that diagnosis might have stuck with him?? THAT has to be scary....chiropractors...neck??? I have had friends go and..I know for many things they know best. GREAT news..and to see him as advanced....must have blown THAT MD away??? Like WTF is going on??? A GREAT thread!!
  9. cblesz

    cblesz Rookie

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    That is a great story! Congratulations. As a father of a 2 1/2 year old little doll...I truly feel happy for you! Raising a child is hard enough without having to deal with special needs. I applaud you and your wife. I'll tell you, before I had my daughter, I would read stories like this and shrug. Now, they touch me and I feel like a whimp because I get emotional over them...

    How about a picture of him in some Pats stuff? Hey, my daughter had Brady's jersey on at 6 months...and I live in CA!!:D
    Last edited by a moderator: Aug 28, 2005
  10. patchick

    patchick Moderatrix Staff Member PatsFans.com Supporter

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    #11 Jersey

    That was flat-out wonderful to read. Congratulations to the whole family! Kindergarten is a blast. :)
    Last edited by a moderator: Aug 28, 2005
  11. Bobs My Uncle

    Bobs My Uncle PatsFans.com Supporter PatsFans.com Supporter

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    #12 Jersey

    Very pleased to hear the happy ending to your ordeal, T-Shirt.

    I am a Chiropractor myself. In my practice I employ a pediatric chiropractor who specializes in manipulative therapy in the treatment of newborns and young infants. Numerous children patients of her benefit immensely from the adjustments that they receive. Including children just like your guy, many of whom have suffered vertebral subluxations resulting in hearing loss (amongst many things) as a result of the ordeal of entering life thru their mother's birth canal. Not sure if this applies to your situation but it is a very common problem in our society.
  12. Turd Furguson

    Turd Furguson Rookie

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    Thats awesome dude.

    Nothing better than seeing your children do well.

    I'm sure you would have loved him no matter the outcome of the test anyways but its good to see that the doctors were wrong.
  13. shmessy

    shmessy Maude Staff Member PatsFans.com Supporter

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    #75 Jersey

    Great news Shirt! From one father to another (boy- 6 and girl -2) I get kind of emotional reading about the trials and tribulations of little ones.

    My son had the tube operations in both ears and, thankfully, has done wonderfully.

    God bless all the children, but especially those who have steeper hills to climb at such a young age.

    Enjoy every moment with him and don't miss an opportunity to hug.
    Last edited: May 17, 2006
  14. desi-patsfan

    desi-patsfan Rookie

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    Very happy to hear that, grats t-shirt. Good luck to your kid in school.
  15. scout

    scout Rookie

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    #15 Jersey

    God bless you and your family shirt. I don't know how I would ever handle something "not right" with my kids. Great news! As for the chiro, I've gone to so many over the years and so many different techniques. I won't go into that (maybe someone wants to start a thread somewhere), but just wanted to wish you and your family the best. Congrats!
  16. T-ShirtDynasty

    T-ShirtDynasty Moderator

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    Yup. After he got over his initial shock at just how bad my son's neck was, he asked about the delivery. It was a traumatic delivery that happened VERY fast, 45 minute labor, and he started down the canal out of position, then turned out to have the umbilical cord wrapped around his neck. The Doc just nodded and said it sounds like it was very likely it happened during delivery and had been like this since day 1 for the little guy. He said he checked both his kids immediately after delivery and one was totally fine and the other was almost as out of whack as my little guy.

    Here's the the kick in the pants. The Speech Pathologist that spent three days a week at my house had a child of her own with a similar hearing situation and the same results from a Chiropractor, yet she was barred by law (State of Maine, I believe) from recommending Chiropractics as a possible treatment!!! :eek: She had first hand knowledge that could have helped us, but couldn't say anything about it. When we told her we were taking our son to one, she smiled and admidted that if we hadn't come up with it on our own, she was going to have to find a way to creatively put the idea in our heads. :)
  17. JoeSixPat

    JoeSixPat Rookie

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    Thanks for sharing that story... must have been a roller-coaster ride coming to terms with your child having to overcome a disability, and then to have it effectively lifted

    I've got no medical background to speak of but it seems to me, that given his age, the natural resiliency of kids being what it is, he'll catch up quickly, and may even surpass others given the compensation skills he was forced to pick up.

    My advice to him on his pending graduation is that he should definately go on to kindergaten. The job market is tough these days and a pre-school education really doesn't take you as far as it once did. ;)
    Last edited by a moderator: Aug 28, 2005
  18. IndyKen

    IndyKen Rookie

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    Hey T Shirt - that's great news - thanks for sharing.....:)
  19. tailgater

    tailgater Rookie

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    Way to go TSD!

    Thank god some kids have parents that will not give up and question everything!

    Congrats!
    Last edited: May 17, 2006
  20. Flying Fungi

    Flying Fungi Rookie

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    Absolutely awesome!

    I'll even skip all the Maine jokes out there and settle for: Normal you say? Must have gotten that from his mother!

    J/K--I can't imagine how great you must feel and how proud you must be of your son for overcoming such challenges at such a young age--major kudos to you and your wife and all of your supporters...

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