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Thread: son with autism

  1. #1

    Default son with autism

    going to the center for autism research in Philly for testing. Ryan's ped doc and a neuro doc at CHOP think he has autism.what can I except, i've never had to deal with anything like this before. any advise please help. I don't know which way i'm going soo worried about my baby.

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Welcome To CN

    ((((((ryansmommy))))))

    I'm so glad you decided to join us here on CN.

    While I can't answer your questions about what to expect with Ryan's testing, I can certainly identify with your fears and worries. I imagine that you are quite overwhelmed by everything, which is a natural response to the discovery that your son is having issues and then following the process of diagnosis and treatment.

    If you haven't visited the Center's website, then I encourage you to do so. Here's a link to their page about "what to expect."

    http://www.centerforautismresearch.com/what_to_expect/

    Additionally, you might want to research autism extensively, so that you can learn terminology and information about autism. Knowledge is power, and there are many sites on the internet with valuable information and insight.

    Before Ryan goes to the Center, I recommend that you prepare a document describing Ryan, his symptoms, when his symptoms began, and any details that you feel would be helpful in his diagnosis. Include his diet, his immunizations, his sleep patterns, his interactions with others, changes you have observed, etc. Having this with you when you go to the Center will be helpful to you in answering questions, or mentioning things, which you might otherwise forget under the stress.

    No doubt you have many questions. Start writing them down, and take them with you when Ryan visits the Center.

    While there, don't be afraid or intimidated if something is said or being done that you don't understand. Ask for clarification. You might even take notes, if that will help you to sort it out later, as you review it.

    Take some deep breaths. Remember every journey begins with one step, and as you follow this journey with Ryan, you will learn more and more until you become an expert.

    We'd love to hear about Ryan and learn more about you and your family. We're a very friendly, loving bunch here at CN, so please join in our conversations.

    Welcome to our family ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #3
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    You should post this on the autism forum here on Braintalk and maybe read the Braintalk autism archives as well. They could probably give you more info on the testing. Wish I could help more. Best of luck to you and your son.
    Last edited by funnylegs4; 11-30-2012 at 06:39 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. #4
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4))))))

    Ryansmommy did post on the Autism forum, but that forum isn't very active, so I invited Ryansmommy to join us here on CN, so she can get the support she needs.

    Good suggestion about checking out the Autism forum's archives!

    To Ryansmommy ~ The Archives for the Autism forum are here:

    http://www.braintalkcommunities.org/...splay.php?f=97

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  5. #5
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    Ryansmommy, Welcome to CN. This group has been a great source of information and support for me and I hope we can help you to feel comfortable and empowered through this journey. As Rose said gathering as much information as you can about Autism is the best thing you can do.Talking with other parents can be a great resource for very practical information on the day to day things and what to expect. One thing that keeps my life in focus is to take only one day at a time. Don't try to look to far into the future. My daughter was born with Down syndrome and she has made me a much better person than I thought I could ever be. She has showed us how much sweeter life is at a much slower pace. She has faced some very difficult challenges with grace and perserverance. She has become my hero. Whatever the diagnosis he is still the same boy... There are so many wonderful support groups for Autism, if you need an online one I know a few families who belong ot one who's children also have Down syndrome along and a dual diagnosis of autism. Please keep us posted and again welcome.
    Mary Grace

  6. #6

    Default

    Debated posting on this topic; I have 2 thoughts, I do not know if either is relevant to your situation

    1) I grew up in the philly burbs. The docs and my parents first thought something might "be wrong @ 6 mos" I was untimely diagnosed with CP @ 13mos. CP is totally different than autism. CHOP may have a fab program for autism-I do not know! But just speaking as someone who went to chop as a baby, don't remember chop-but I know my mom isn't lying about her experience. By the time I was two, she that hospital! I was admitted @ 6mos for testing cause I had colic so bad-the pediatrician thought maybe I was having a seizure. During the admission-mom said they where so understaffed on my ward, she starting helping feed/change babies cause she felt bad..Mom stayed with me the whole three days, hyper vigilant about germs!! When I got home, still came down with a staph infection! Than at 18 mos the head of neurology, who I am 95% sure IS NOT there anymore or be involved in your case, but he diagnosed me as MR based on a simple motor function test!! I cannot even believe how any doctor could make that mistake!(this happened 30 years ago, so things are lots have changed surely)

    By three we had switched to the AI duppont hospital in Wilmington, my parents where so much more impressed with that hospital. They said at chop their child just felt like a number for their research. Mind you I was seen by primarily orthopedics there-totally different than autism. I t grew up going there lots of memories-to me it is the best peds hospital in Delaware valley!! I was in-patient a number of times that I was old enough to remember. At the time I was there 3 kids per every 1 nurse. It got to feel like my 2nd home so germs really wasn't concerned-I'd go around the unit bare foot like I was at home... Never got any infection.

    BOTTOM LINE: I'd want any parent in the area to compare AI dupont to Chop for what they need..I believe DuPont is amazing but you may think chop is better at treating your child's issues. As an adult I went to another hospital as an outpatient for their adaptive driving specialist. So when I hear oh that place is so skanky to be a inpatient-well I don't care..The person I worked with through Kessler did a fabulous job in handling my case..All I care about. So it's very individual.. Any place has good and not so good people. Opinions are like...

    2. I am now interested in vaccines and came across this Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders Don't know alot about autism, know everyone promises some miracle. But I thought the it sounded interesting. Even though I also still totally believe in your traditional therapies-don't mistake me for being anti-anything however never hurts to get a different take..

    Feel free to say she has no clue what she's talking about!

    Good Luck to you and your son
    Last edited by jul97; 11-30-2012 at 10:17 PM.

  7. #7
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    We are in a much different spectrum than you and I know little about Autism, but you have come to the right place for support. We have been here for about 16 years and the people who share here are an amazing group. Welcome. Looking forward to learning more about you and your family and the journey you are about to embark on. Best wishes for the holidays.

    Tamie
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  8. #8
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    Hi Ryan's Mommy. Welcome to our forum! My son doesn't have autism and he's all grown up (24). BUT I can absolutely identify with your fear and downright dread at these daunting diagnoses and trips to specialists. My son has cerebral palsy but he has some things that I notice are quite common in autism, for example his aversion to sudden loud noises. He HATES those! I don't know, I think our children are so exquisitely uniquely themselves. It's depressing to put labels on them - they are adored for who they are. We need the labels to get service and specialized resources, but then I think it's important to put the labels away, if we can. Good luck my friend and welcome to our community. Hugs.
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  9. #9

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    leaving for Philly tomorrow - will update everyone when we return home Thrusday, Please keep Ryan in ur thoughts & prayers as we start down a unknown road with him.

    My husband told me to come to brian talk he had a son who is now our angel above, he said he got through some tough times with the cn family here. Some of you may remember him as blazes daddy. Blaze was trached & tube feed 2 brain surges along with 11 other for different things, but this is my first time. I know it's breaking his heart too, he had Blaze 8 yrs as a single dad and was a pro by the end, look forward to getting to know you all, ryansmommy

  10. #10
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Welcome to CN/Braintalk! I don't know a lot about autism...I have a daughter with CP & seizures among other things. Wishing you good luck during the testing and I hope you get great doctors there that take the time to explain everything to you. ((((hugs))))

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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