ANOTHER Adventure in Autism (4/15) A Taste of What's to Come...

Discussion in 'Completed Trip Reports' started by KathyRN137, Jul 8, 2007.

  1. KathyRN137

    KathyRN137 ...and the greatest of these is Love

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    Pre-Trip #1: Everything Old is New (Jersey) Again!

    Chugga-chugga, chugga-chugga, chugga-chugga, woo-woo!

    The little red and green engine in my countdown ticker has been s-l-o-w-l-y making it’s way along the tracks. It’s destination: Walt Disney World! KathyRN and family are goin’ back!! :woohoo:

    The ticker reads "4 months to our WDW Vacation." I cannot wait any longer! :yay: I must start another Pre-Trippie!


    *(The Trip Report begins on Page 59 with a PTR Recap)*

    Table of Contents:

    Post #1: Everything Old is New (Jersey) Again!
    Post #23: Ah, Wilderness!
    Post #35: The Gambler
    Post #47: Like Walking Through a Pool Full of Jell-O
    Post #56: Oh, Mike Goodness!
    Post #64: AD-R-U-OK?
    Post #77: Over the Cliff and Through the Woods...
    Post #90: Operational Plan: 2007!!
    Post #94: Stating the Obvious, With a KISS!
    Post #99: DIAL-A-CROC!
    Post #138: To Sleep, Perchance to Dream...
    Post #141: 99 Numbers of Cheer on the Wall, 99 Numbers of Cheer!
    Post #156: How the Lime Turned Into a Lemon!
    Post #195: Molar Madness
    Post #232: Goldilocks and the Three Bags
    Post #261: The Dog Days of Summer
    Post #281: A Nerd's Guide to Multiple-Choice
    Post #306: Wherein Ed Downloads My Giblets
    Post #333: Hello, Dolly! (Part One)
    Post #338: Hello, Dolly! (Part Two)
    Post #347: Hello, Dolly! (Part Three)
    Post #366: Much Ado About Nothing
    Post #377: Making Our Lists, Checking Them Twice
    Post #416: Tootsie-Pop Trippie
    Post #419: More Tootsie-Roll Center
    Post #426: A Pack Rat's Packing List
    Post #475: RV Planning Another Adventure?
    Post #497: RV Planning Another Adventure? (Part 2)
    Post #537: Oh, Deer Me!
    Post #547: The Cowboy Way...at Disney!
    Post #559: Itty Bitty Nitty Gritty
    Post #590: "Hey...You...Guys!"
    Post #616: Just a Pair of Pin Heads
    Post #650: The Bare Necessities
    Post #666: Billy Update
    Post #676: Better Than Xanax
    Post #687: The Shirt Off My Back
    Post #695: Birthday Booty
    Post #704: Just a little Mood Music
    Post #713: Doctors and Hospitals
    Post #741: Ten for Ten!
    Post #763: "Into every life, a little rain must fall."
    Post #773: The Silver Lining
    Post #815: My First Homemade Disney Shirt!
    Post #821: Ghosts & Goblins in the Sewer


    ******************************************

    We’ve chosen Jersey Week for what will be our fifth family vacation to WDW. We went during Jersey Week last year for the first time and it worked out well. The kids already get 2-1/2 days off for Election Day and the NJ State Teachers’ Convention, so they only miss half a week of school if we go to Disney for a week (along with a giant chunk of our state population!) This year, the dates are 11/3 - 11/11.

    I love going to WDW at this time of year! Yes, it’s a bit more crowded than during the Value Season months, such as September or January, but its worth the trade-off for the kids to miss fewer days of school. I think the weather is perfect (not too cold, not too hot, very little chance of rain), and we return home just as we begin to gear up for the holiday season. It helps to ease some of the PDD (Post-Disney Depression) if I’m forced to get busy with something other than trip planning, and have less time to mope around!

    "Pardon me, but have we met?"

    If we have, then you already know the story behind the title. If we have not, then a few introductions are in order!


    ******************************

    The Cast:

    Ed: :cool2: DH(46)(Dad): Occupation: Police Lieutenant. Quick-tempered, strong-willed, and protective. Enjoys road biking, and watching TV, especially the Law & Order and the CSI shows. Favorite Character: Grumpy. (That really fits sometimes!)

    Tricia: :earsgirl: DD(11): Occupation: Sixth-grader. Bright, impatient, and outgoing. Enjoys reading several books at one time, playing soccer, and playing with her American Girl dolls. Favorite character: Tinkerbell.

    Billy: :earsboy: DS(9): Autistic. Occupation: Special Ed student. Affectionate, noisy, and happy. Enjoys splashing in the pool, spinning, and DVDs: collecting them, categorizing them, watching them. Favorite character: a tie between Woody and Buzz.

    Aunt Rae::flower: AR(77): Ed’s aunt. Occupation: Spoiler of great-niece and great-nephew. Conscientious, fastidious, and sweet. Enjoys cleaning things that are already clean, eating out, and listening to music, especially Andrea Bocelli. Suffers from Obsessive-Compulsive Disorder. (Think: elderly female "Monk") Favorite character: Cinderella.

    Kathy: pooh: (43)(Mom): Occupation: RN. Messy, empathetic, and diplomatic. Enjoys old movies, talking on the phone (not texting), and DISing at every opportunity. Favorite character: Winnie-the-Pooh. Oh, and I do like honey in my tea!


    ******************************​


    Eddie: :smooth: DSS(17), my stepson who lives in North Carolina, has opted not to join us this year. (You may recall he flew down and spent three days with us at Disney last year.) Just too much going on with school and extracurricular activities, I guess. Oh well. :sad1:


    ******************************​



    The Accidental Co-Tourists:

    About four months ago, I was over at my sister Marilyn's house and the subject of WDW came up. She’s really nuts about WDW, too. She had visited a few times before I ever had the chance, once being her honeymoon trip, but had not been back in several years. (Meanwhile, my family had been every year since 2003.) She was really itching to go back, but was a bit hesitant since her three girls, ages 4, 3, and 1yr. were so young.

    She admitted to me that, despite any apprehension she felt about trying to “do” WDW with a diaper bag, strollers, and little ones who needed to nap, she had taken the plunge and booked a vacation package. She reasoned that if she waited for the baby to be “big enough”, the older ones would pass on through the prime “Disney Princess phase” princess: and it would be lost to her forever.

    She was both thrilled and concerned that she might have made a mistake; after all, she and my BIL had never been to WDW with even one small child, let alone three. I told her that I thought that bringing kids at any age was doable, as long as parents planned and toured accordingly. (The reason we had waited until the kids were older was more for financial reasons than anything else.)

    “So, when are you going,” I asked, excited to be able to “talk Disney” with someone.

    “November,” she replied. “Hold on, let me check the calendar for the exact dates…”

    “November!” I said with surprise. "We're going in November, too!" Well, that’s a major coincidence! I wonder…

    “Here it is. We’re driving down to Florida, arriving on Saturday, the third. Well spend the weekend with John’s parents in Vero Beach, and then check into the Caribbean Beach Resort on my birthday, Monday the fifth,” she looked up from her calendar and saw that my mouth had dropped about all the way down to my chest.

    “Marilyn, that’s the same week that we’ll be there!” I practically shouted. Her eyes got as big as saucers. :eek: “You’re kidding!” she shouted back, and we both began laughing excitedly. We called the kids into the kitchen and told them the incredible news: their mommies had planned their trips to WDW for exactly the same week without even knowing it!

    Wild, high-pitched little girl screaming erupted as my two older nieces jumped up and down with their cousin, Tricia. “We’re going to Disney together! We’re going to Disney toether!” they yelled. Baby Josie, who had been sitting in the high chair the entire time, caught the excitement of the others. “Hah! Hah! Hah!” she panted as she kicked her chubby legs wildly.

    Billy, a bit startled at the sudden screaming of the girls, had run out of the kitchen with both hands covering his ears. He retreated to the relative calm of the family room and resumed playing with some of his cousins’ toys. His big sister sat down next to him and tried to explain the reason for all the fuss.

    “Billy, guess what? Emily and Beth and Josie are going to Walt Disney World when we are!” she said. Billy did not acknowledge her. She tried again.

    “Billy, do you want to go to Walt Disney World with Emily and Beth and Josie?”

    “No, no, no,” he shouted. “Go with Mommy and Daddy and Tricia and Aunt Rae!”

    >> Okay, take two:

    “Billy,” she said, a slight hint of exasperation beginning to appear in her voice, “Do you want to go with Mommy and Daddy and Tricia and Aunt Rae and Emily and Beth and Josie?”

    “…And Aunt Marlin,” he grunted.
    “Yes, and Aunt Marilyn.”
    “…And Unca John.”
    “Yes, Billy, and Uncle John, too,” she rolled her eyes. “We’re all going together. “Isn’t that great?”

    Billy replied with a resounding, “Yes!” Then he got up and ran to the front door to get his sneakers. “We go to Walt Disney World. Yes. Okay.” He pulled on his sneakers and stood up.

    Billy was ready to go! It took a few minutes for him to be persuaded that we were not leaving just yet! After a few tears, he forgot about his momentary disappointment with the help of lots of hugs from Mom and the distraction of his cousins’ attractive DVD collection.


    And so now, because we will be meeting my sister’s family for some character meals and parades, we will have a Supporting Cast:


    Marilyn: :flower3: DSis(Turning 39 in the World) Avid scrapbooker. Favorite character: Cinderella.

    John: :cool: DBIL(48) Big football fan. Favorite character: Aladdin.

    Emily: princess: DN (will be 6) Shy, soft-spoken. Favorite character: Ariel.

    Beth: princess: DN (4) Extroverted, fearless. Favorite character: Aurora.

    Josie: princess: DN (will be 2) Very happy baby. Born with a medical condition that causes her to be exquisitely sensitive to heat and the sun. Favorite character: Tinkerbell (as far as we can tell!)


    ******************************​



    It’s hard to tell any story that involves our family without first talking a bit about something that affects us all very deeply, and that’s Billy’s autism.

    Now, if you really, really want to know more backstory, I invite you to read my completed trip report from last year’s vacation, Adventures in Autism: WDW, before jumping into this one. (The link is in my signature, below.)

    And if you would like to read more about Autistic Spectrum Disorders, the link to Cure Autism Now is: http://cureautismnow.org


    **************************​


    Excerpted from my 2006 report:

    Autism is a neurological or brain-based disorder that causes problems in cognition, communication, and social interaction. There are many symptoms and conditions associated with autism and it can be difficult to know that a child is autistic just by looking at him. Many people think of the Dustin Hoffman character in Rainman, but those savant characteristics are only shared by a few on the autism “spectrum”.

    Billy attends a special school and receives speech, occupational, and physical therapy. He displays very poor eye contact, impaired conversational abilities, repetitive language and mannerisms such as hand flapping and sniffing objects. He has a degree of hyperactivity and poor attention span that makes it difficult to attend to an activity for more than a few moments without direction and supervision. He has a poor hand/finger grasp and has difficulty with handwriting and other “small” movements such as buttoning buttons and snapping snaps.

    He constantly makes noise…humming, singing, “scripting” pieces of dialogue from his favorite TV shows, and laughing. Big, boisterous belly laughs at nothing in particular. Usually at inappropriate times like in the middle of the homily (sermon) in church! Or, in the middle of watching a baseball game from the stands…while others shout, “Swing batter, batter!” Billy will shout, “Rudolph the Red Nosed Reindeer!” at the top of his lungs! :rotfl: That one was pretty funny! In our house we call these moments "adventures in autism."

    ******************************​


    The 2007 Update:

    Billy has made some progress in the past year. At the age of nine, he is reading and doing math that is on an early 2nd grade level. His spontaneous language is increasing and he has begun to initiate play with his sister and his classmates. He sang a beautiful solo in the school art and music show! :goodvibes

    Balancing his progress, however, are a number of concerns. :worried: He continues to need lots of refocusing and verbal prompting to stay on task, both at home and at school. He increasingly breaks out into uncontrollable laughter and frequently gets distracted by the repetitive “scripting” in his head.

    His intense focus on DVDs and videos has slowly become more obsessive… every room in our house looks like Monument Valley. Stacks of DVDs and videos are arranged on just about every surface. He groups them by artist, by subject, by when he received them (birthday gifts here, Christmas gifts there). DVDs and videos from the library are kept in separate piles. He is constantly pulling them out of the cabinets and we repeatedly have to get after him to put them away. Sometimes he violently refuses, and acts out by screaming and biting, especially if Ed is not home. We considered locking them all up, but upon reflection, we decided to try to work on the situation with behavioral interventions instead. It didn’t work. :sad2:

    Several weeks ago I wanted him to come downstairs to brush his teeth and he insisted on carrying an armload of DVDs with him. I made him leave them in his room and he became very upset. As he was brushing his teeth, I got sidetracked with helping Tricia with something for school and he snuck upstairs, scooped up the DVDs (about ten or twelve of them), and proceeded to carry them downstairs to the bathroom.

    Suddenly, I heard, a THUMP, THUMP, THUMP, and CRASH! There was Billy at the bottom of the stairs surrounded by DVDs, crying and holding onto his left arm. His wrist was swollen and when we brought him to the ER, sure enough, it was broken! For the next four weeks his arm was in a cast; a difficult thing for any nine year old, but it practically drove Billy crazy. :crazy: He picked and pulled at it so much that after two weeks, part of it was disintegrating and we had to bring him back to get his arm re-cast. He couldn’t understand why he was not allowed to play on the swings and the slides at recess or play like the other kids during P.E. class. Thank goodness kids heal faster than we do!

    If he hadn’t been obsessed with the DVDs and tried to carry so many down the stairs, I’m convinced he wouldn’t have had that accident. For me, it was the final straw.

    We had always thought that we would try to manage Billy’s autistic symptoms without medication unless it was absolutely necessary. Now with the increase in OCD-type behavior at home and the increased need for re-focusing in school that was being reported by his teachers, we decided to have him evaluated by the school psychiatrist.

    After the evaluation, the doctor did recommend medication for the obsessive-compulsive behaviors and we reluctantly decided to give it a try. He’s been on it for a few weeks now, and while its still too early to tell if it is helping, there has been one very wonderful development. I don’t know if it’s the medication, and frankly, I really don’t care. Because I’ve waited for it for nine years......




    "I love you, Mommy."


    It’s an unprompted declaration….not just something he echoes woodenly when I say it to him. He looks me in the eye, wraps his arms around my neck, and tells me that he loves me.

    Every night I’ve prayed. I’ve wished upon a star. Please, God, make him…..a real boy.

    "I love you, Mommy" is a beautiful start. :cloud9:


    Kathy
     
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  3. mrsksomeday

    mrsksomeday My Prince uses a power wheelchair!

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    Oh Kathy, reading those paragraphs is worth being up this late. I am sitting here crying happy tears. That is so wonderful. I can't even imagine how amazing that felt to hear.

    Thanks for starting the pre-trippie. So sorry Eddie isn't joining you, but it is great that he has goals and focus. It is fate that your sister booked the same week, I hope you have a fabulous time.

    Can't wait to read more!!
     
  4. estherhead

    estherhead DIS Veteran

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    Oh my goodness! I can't believe he said "I love you!!!" !!!!!!!!!!!!!!!!!!! Congratulations. You know what you deserve for such a special moment? A trip to WDW.
     
  5. tiggerbell

    tiggerbell DIS Veteran

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    If I can stop the happy tears long enough to hit the "Send" button - I'll be IN!!! :thumbsup2

    Kathy, your first report with the kids was so memorable, I actually thought of Billy when I was in Disney in May. I'm thrilled to be getting in on the ground floor for this report! :hug:
     
  6. Halloweenqueen

    Halloweenqueen Whenever Candle Lights Flicker...

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    What a wonderful start to your trip report! :goodvibes

    Is your Aunt Rae coming this time?


    Can't wait to hear about your trip plans. I took so much good information from your last reports. :thumbsup2

    I'm sorry to hear about Billy's arm. William broke his left arm a couple of years ago. He climed on his sister's playhouse and jumped off. It wasn't a bad fall and he kept right on playing. A couple of hours went by and he was nursing the arm, but not really slowing down. It started to swell and I decided to take him to the ER. It was broken in two places. He needed surgery to insert pins around his elbow. He hated the cast as well and was constantly banging it on objects to try to "make it crack". It was a long 4 weeks.
     
  7. blue_river

    blue_river <font color=coral>I do believe in fairies!<br><fon

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    What a great start :cheer2:

    I laughed when I read the part about you not being able to wait any longer to get this PTR going. :rotfl2: I felt the same way.

    What wonderful news that your sister will be going at the same time. :goodvibes

    Will she be chiming in on this TR?

    This was the BEST part of your first installment. :hug:

    I can't wait to hear all your plans. :yay:
     
  8. Marion

    Marion <font color=blue>Go Blue Jays!!<br><font color=#FF

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    Oh Kathy.... you've got me crying here damnit! :hug: How wonderful... I am soooo happy for you. I know what an amazing moment that was for you :cloud9:

    One of my bestest friends in the world has an autistic daughter. We've been friends since her little one was 4 years old (same age as my youngest... they're now 18!) She's a single parent and was struggling to cope with all the autistic behaviours and stresses alone. It was a real eye opener seeing how people react to others with 'invisible disabilities'. Anyway, they quickly became a part of our extended family and Shannon grew up thinking she was part of my brood... subject to the same rules and all that. She's always been an affectionate child but spontaneous verbal skills were slow. She could recite any number of commercials and movie scenes but no 'I love you's' until she was 12. What a day that was :)

    Long story short, they've since relocated to the other side of the country, Shannon graduated high school this year, functions great at home now. She has her routines, her chores, her activities and her future looks very bright.:wizard:

    Thank you for sharing and I can't wait for your next adventure! :dance3:
     
  9. Montana Disney Fan

    Montana Disney Fan <font color=blue>GAT-Master Extraordinaire<br><fon

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    You'll be there during the Food & Wine Festival!! :woohoo:

    Are you going to be able to go out with just you, Ed and your friends? If you do, hit Epcot one evening, sip a few wines, listen to some music then enjoy Illuminations.

    We'll beat you by a month. We're down Oct 7-19 so the parks might be a little messier than your used to. :lmao:

    We took Trey off all meds and he is MUCH happier -- wild and crazy like a freakin' mad-man -- but much happier. We've been taking him swimming every day and that is helping him become more aware of himself. He goes down the slide about 30 times and chases his sister around. The lifeguards all know about his handicap but treat him no different than the other kids which is great.

    Are you staying with your friends at CBR?
     
  10. Avivasmom

    Avivasmom DIS Veteran

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    WOW Kathy what amazing words to hear. I can only imagine how you must have felt if I have tears in my eyes for you.

    Do not know if you remember from your last pre-trip report but going for my masters in ESE (Exceptional Student Education) with an endorsement in autism. 2 more classes for autism to go.

    Billy has come so far this past year how exciting!!

    And getting to be with family there just priceless!
     
  11. tacomaranch

    tacomaranch Tacoma Ranch home of wild mustangs! We are all on

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    Kathy,

    Thanks for sharing your trip with your Dis friends. I was also in tears reading about Billy saying he loves you.:banana: :banana:

    Parents of NT's just don't know how much these few words mean to us. I am rejoicing in such wonderful progress.

    Please keep the reports coming.
     
  12. praisehisname

    praisehisname DIS Veteran

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    Kathy, thanks so much for sharing your story. I can't even begin to imagine waiting 9 years to hear my child say I love you. I have tears in my eyes right now. I'm looking forward to hearing about your planning!

    Denise
     
  13. fraggle551

    fraggle551 DIS Veteran

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    I would just like to say hello. this is my first post, and I am completly taken with your story. I am an elementary education major, and I will be getting my masters in special education. I am so happy for your son to be able to say 'i love you' for you. congratulations. I am looking forward to reading the rest of your pre-trip report.

    once again, congratualtions!!
     
  14. Crazy Kanga

    Crazy Kanga DIS Veteran

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    Oh, Kathy, I burst into tears when I read the last few lines. I am so happy for you. I love reading your trip reports because Billy and Nick seem so much alike. God Bless you and your family and I will be glued to your trip report!
     
  15. AGPrincess

    AGPrincess Disney Snob -- Bookish Princess

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    Hooray! You started your pre-trip report!

    I'm so happy for you that Billy said 'I love you!' I'm about half-way through your first trip report, and I so admire you! You are so patient and understanding with your little boy! What a wonderful moment! Thank you for sharing it with us! :hug:

    It's too bad your DSS can't come to WDW with you this time. But having just gotten through my own AP-ridden school year, I can understand how he just can't get away (even for Disney World!). :sad1:
     
  16. Marion

    Marion <font color=blue>Go Blue Jays!!<br><font color=#FF

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    We'll be there 3-11 so we'll have to be on the lookout! :teeth:
     
  17. SwansLoveDisney

    SwansLoveDisney DIS Veteran

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    I am crying right now! Thanks!

    I am a pediatric physical therapist and I work with kiddos with autism on a daily basis. I can not even imagine the joy and accomplishment that you and Billy must have felt when he told you he loves you.

    I'm excited to hear more and I'm on my way to read your last TR!
     
  18. KathyRN137

    KathyRN137 ...and the greatest of these is Love

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    Hi Everyone! :wave2:

    I am so deeply touched by your responses! It makes me feel so blessed to have so many caring people take the time to post. I have to admit, though, I feel a bit guilty since I made so many of you cry!!


    mrsksomeday: My fellow night-owl!

    estherhead: Definitely worth the wait!

    tiggerbell: Laughter through tears...

    Halloweenqueen: Yes, AR is coming; she wouldn't miss it!

    blue: Sis doesn't DIS; but she'll probably scrapbook the entire trip!

    Marion: Sorry about the tears! :flower3: Have a flower!

    MDF: I'll have your awsome TR to help pass the wait time!

    Avivasmom: I do remember; looks like you're almost done! :teacher:

    Tacomaranch: You've all been very good friends!

    praisehisname: Thanks! Glad your trip didn't go down the drain!

    fraggle551: What an honor to be your 1st post! Welcome to the DIS!

    CrazyKanga: Billy & Nick would get along great! (esp. in the pool!)

    AGPrincess: We're :sad1: that Eddie won't be coming; his brother and sister adore him!

    SwansLovesDisney: I admire you; you must have loads of patience! :rolleyes:

    Thanks for reading!

    Kathy
     
  19. *CheshireCat*

    *CheshireCat* Earning My Ears

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    I am so happy for you and your son! As I type this I am there are tears streaming down my face and I can only imagine the happiness your feeling right now :cloud9: :love: Congrats and I am sure your going to have a blast in WDW this November, a great way to celebrate!:)
     
  20. iluvmickeytown

    iluvmickeytown Mouseketeer

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    I'm so glad I clicked on your pre-trip report. I love how you write. I'm looking forward to more. That is so precious your son saying "I love you mommy". Oh I'm going to start crying all over again. Keep posting. I think I'll find your other report and read it. :grouphug:
     
  21. katdocnorf

    katdocnorf DVC since 1997

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    My DSS20 is also autistic. He cannot do some of the things that you mention your some can do. Math and reading to be exact. But we think the same way you do about medicating. When he was 3 or 4 the doctors had put him on ritalin. Well the teachers at that time did not like how it made him. Unresponsive most of the time, hard to get him to do any work. It calmed his fits, etc but they could not get him the do anything. Since then Justin has not been on anything at all. Now that he has gotten 212lbs and 5' 11", when he has a temper tantrum (which is what we call it). It is very difficult for me to control him. He will try to bite himself and if I get to close bite me as well. Either way himself or me, he does not know his own strength and will draw blood and at least make one heck of a bruise.

    Now we are at the point of think about meds. But his regular doctor will not prescribe them and wants him to see a psychologist, but there is not one that we have been able to find that will deal with autism. So that is where we are at now.

    I am real interested in hearing how that goes for you though. I love reading your trip reports also. They help me because I can associate. THANKS MUCH and sorry for rambling on.
     

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