Carly and autism

Subscribe to Carly and autism 20 posts, 16 voices




 

2011-10-07_11-51-07_282_medium robinogg 1 post

I am an at-home mom of 2, wife, RN, and keeper of many many plants and a few pets.  I consider myself a curious, never quit learning and experiancing kind of person.  One who strives to improve..  I was so moved by the story about Carly, the teen with autism, that I was compelled to write.  My husband and I are both “gifted”, in opposite ways, and our two childeren inherited our “gifts” and deficits in opposite ways. (of course).  My son is 13, almost 14, and is a special child, as is his 17 yo sister.  Very intelligent, loving, compaasionate, etc., but may have some slight symptoms of autism and possibly Asberger’s.  Seeing and hearing Carly was a HUGE light-bulb moment of understanding for my sweet special boy whom I work so hard with to help him first want to fit in with the world enough to get along without too much trouble, and how to fit in.  Recently he was flapping his arms around kind of wildly as we conversed.  I just smiled, and eventually joined in, in a fun way.  Now I so understand it was ‘stimming’, which I had never heard of.  It is so wonderful to have some understanding of why he shuts himself away and doesn’t care to be with others much of the time.  He says he is going to invent and sell a totally new computer like Bill Gates and Apple combined.  I actually think he may be capable.  To get to the point, I cannot express how much this new understanding of the childeren I love so much means to me.  Being the best parent I can is the most important thing in the world to me and you just gave me a whole new perstective and understanding, which will help me so much over time with them, and others in my life.  Thank you, thank you, thank you!  XOXOX Robin Ogg, Newberry, FL.

 
Gedc0800_medium grma Amy 3 posts

I was so excited to see Carley has been able to communicate her thoughts and feelings so well. My granddaughter will be six yrs old this month and is non-verbal autistic, her name is Kylie. My profile pic is Kylie she is beautiful. She is learning to use a device much like what Carley is using and I know that she is so capable of doing what Carley has done. I cried through most of the show. When Carley traded chairs with Dr.Stork I laughed, because Kylie does the same thing, if Kylie wants to sit where you are sitting the best thing to do is to let her. Thank you for giving me more understanding of Kylie’s condition. she is a very special little girl and I try to learn everything I can about her world.Thank you so much. Amy Shelton

 
Us_medium jeanniem 3 posts

Wow! This was one amazing show! As a mother of a 24 year old daughter with Rett Syndrome, which is an autism spectrum disorder also, I found this show very moving. I have always felt that my daughter is totally in there! I have been waiting for years for the technology to get here for her to be able to speak one day! I know that these devices are very expensive to purchase. Just hoping that some day that all of us families with children that  cannot speak will be able to afford these devices so that we can hear things like “I love you” or “what a beautiful day it is” or “I just don’t feel well today!” This has been my dream for years! Jamie has had teachers tell me that they believe she could use one of the devices that track eye gaze because  she tracks very well with her eyes. One of the symptoms of Rett Syndrome is that she lost the ability to purposely use her hands, when this happened she was about 2 years old and would bite her hand because it just wouldn’t do what she wanted it to do! This really gives a whole lot of families hope! thank you so much for doing a show on this!

Sincerely,

Jeannie Miles

 
Icon_missing_medium CarrieHP 1 post

Way to go Carly!!!  You give me hope for my 6yo son with Autism.  He is also nonverbal and has just started using an augmentitive speaking device.  He has so many different challenges, he was born with spina bifida, hydrocephalus and was diagnosed with autism at the age of 5.  Thank You Carly, you have given me hope and insperation!

 
Gedc0800_medium grma Amy 3 posts

To Jeanniem and anyone else interested: There is an app for Ipad & Android that is called taptotalk that is wonderful and you can get it for $100 plus whatever device you put the app on.We chose the nabi tablet which has android capabilities.Also, if the therapist can document that your child will benefit from one of the more complex communication devices like the one Carly uses, most insurance companies will pay for them. We started Kylie on the taptotalk and her therapist is working on the documentation for the insurance company to get her the more complex devise. Good luck to you in finding what works best for your child and your budget. These kids need to be able to communicate without frustration.

Sincerely,

Amy Shelton

 
Dscn1091_medium Bluemer88 1 post

This really gives people with autistic children hope. My 2 year old daughter has been found to have autism. She is basically a 1 year old in a 2 year old’s body. Its heartbreaking when she gets so scared of everyday noises to the point that she panics. She prefers to be ignored if someone tries to pay attention to her she yells. I have yet to tell people because i dont want them to look at my daughter differently. Like she is broken or dangerous. More people need to be educated in autism. We live in a small town and there isnt alot of help or advise here and there is alot of ignorance, so thank you for doing this show. Hopefully it showed people autistic children are just as capable as “normal” children. Thank you, Tiffany Bluemer

 
Icon_missing_medium rlf1496 1 post

First I want to thank the Drs for bring awareness for these devices. I have a 22 year old daughter who is non verbal due to cerebal Palsy. When I watched the show today and seen how Carly was able to communicate with everyone was amazing. I watch my daughter everyday, she is so full of thoughts and ideas and many times gets very frustrated when trying to tell others what is on her mind.

Over the years she and I have developed our own way of communicating so she depends very much on me to relay what she is trying to say to others. It can be very differicult at times for her and myself when it is something I am just not able to figure out.

I have tried for the past few years to get her a device like Carly used on todays show but I have found that either phone calls don’t get returned or financially I just can’t afford one. I am still tring to find funding somehow to get her one of these wonderful devices but there are a lot of obstacals that get in the way and lots of red tape to get through.

When I seen Carly on the show today I was compelled to write and say thank you to the show for airing this wonderful and up lifting story.

I just want to tell Carly to keep up the hard work, the device she is using will continue to open many doors for her and she is a true inspiration to me for my own daughter.

God Bless

Loretta Fagg

 
P1000369_medium cd pham 1 post

drs’  thank u sooo much for the episode w/carley and the other amazing individuals who overcame their medical malady. It was personally inspirational and educational.

 

1st, i was feeling sorry for myself bc ….what can i say, i’m a medical student, and  felt i would never graduate, i’m a 2yr. 

 

2) I learned so much about autism and alzheimer’s and came to a new level of respect for those with these diseases…they were no longer just something i read in my med. books.

 

3) The reaffirmed their message to me, NEVER,NEVER,NEVER Give Up!-Winston C’hill.

 

again,thanks u so very much.

 

 
Us_medium jeanniem 3 posts

To grma Amy, I would love to be able to get a tap talk app but Jamie doesn’t have the ability to use her hands purposefully, I wish she could, it would be so much easier, but the only kind of device that she would be able to use would be with eye gaze. I know that these devices exsist but unfortunately they run about 25 thousand. A boy in her class a couple of years ago had one and he was very successful at using it! He even gave a speech at graduation! My daughter’s teacher thought Jamie could use this type of device because she has excellent eye gaze but not able to use her hands to hit buttons.

 
Gedc0800_medium grma Amy 3 posts

To jeanniem. I am sorry, I did not realize that your daughter is unable to use her hands for these types of devices. I truely wish that I had an answer for you and your daughter. Just as the show today said “NEVER GIVE UP”. I will pray that you find an answer. Taptotalk has a facebook page maybe someone from their fb page can help or offer suggestions, they have been very helpful to me. Hey, here is an idea maybe the Dr.s can help. every non verbal child deserves a chance to communicate. I will pray that you find the answers you need to help you help your daughter find her own special way to express herself.

Sincerely,

Amy Shelton

 
Icon_missing_medium korral 1 post

thank yo ufor saying what is in ur heart. ur story is moving to my family as to my son alexander was told that he is autic whenhe was two and he is now four aand he still does not talk. He is trying to tell us how he is feeling.

 

 
004_medium JimTandRebeccaJ 1 post

I am glad that Carly came out and did that.  That took alot of courage to do that.  I am very proud of her.  She is amazing she is a beautiful woman.  Thank you Carly for teaching me what autism is.  You explained things very well today.  I am glad you have all the support that you have.  you guys are awsome

 
010_medium jennip76 1 post

As a mother with a child on the Autism Spectrem it was so amazing to hear Carly’s story.  To hear from her own words how autism affects her was so moving.  I could really relate with the story her parents told of the struggles the family faces by not understanding how to help.  Thank you for sharing your story Carly!

 
Us_medium jeanniem 3 posts

Thank you Amy! We never pass on prayers! I will never give up on my daughter and honestly, I can communicate with her somewhat, guess you could say that I can see things in her eyes. She is a very bright girl. We are parents of 4 daughters, Jamie is our second and we have two younger. I  have had people tell us in stores" what a shame, she is such a pretty girl", my reply is " No it is not, she was born this way for a reason and I wouldn’t trade her for anything!" She has always been a joy to everyone that knows her. When she went through the graduation ceremony at high school her whole class gave her a standing ovation! Made me cry. So I do believe that she was put on this earth to teach people. She IS special and will always be a gift to us!

 
Icon_missing_medium jbbwers 1 post

I watched the show on Carly and she is an inspiration to all the families that children with Austim, and she also help people to understand about adults and children with Austim. I have a 10 year old son he is in the 5th grade he goes to a wonderful school that intergrates him into a class with other kids that do not have special needs and the good thing is that the kids in his class room have an understanding that he is different from them. He has come a long way to get to where he is now he still does his OT, Speech, and social group in school which is a big help for all of us. Lucklily he is on an IEP program which pays for all his therapies. I very happy for Carly at what she has accomplished and shaing it with all of us on the show. Keep up the good work Carly.

 
Icon_missing_medium PageM 1 post

Just so everyone on here knows, that amazing device Carly is using to communicate is nothing to wild, crazy or expensive… it’s an iPad! Carly uses and iPad to communicate and tells on her website about the various programs and “apps” she recommends. As a support worker, I’ve seen many kids use iPads for communication and as long as they have the use of their hands, it rarely ever fails. It also helps the kids to feel like their typical peers because they are using something mainstream. I’ve also seen kids who have limited use of their hands/arms, use the knuckle of a fist , or hold a stylus pen to use their ipad like everyone else (surf facebook, watch youtube, etc) good luck to you and all your children!

 

 
Icon_missing_medium liztriplee 1 post

i am the greatgrandmother of a two yrs. he has a low specteum and had some help while waiting to see the spec. well that never happened my grandson inlaw is or was in the Army and due to his own injuries had to Ret. early with disality @ 26yrs. back nto important part my greatgrandson never got to see the doctor becaue they came back to Ca. only for us to find out all the babys records are still in Ky,Fort Knox. i made a appt with ped.Dr. to get referall to the Autius Spe.I am now trying to get th medical records and all thephy help he recived. he has regressed pre my granddaughter when all therphies stopped in about july of this year.I do need to say my Granddaughter is my Hero she has taking care of Scotty from day 1 herself. The father is in denile of it all and makes it harder for her to get the info she needs to get hlp. I just would love to learn more to help her with him. I am disabled so I can only help so much. realy  could use help for my greatgrandson Scotty.I Love you Always and Forever your Meme

 
Icon_missing_medium christine pa... 1 post

I am an OTA student at Rutger University and I was so impressed and interested to listen to Carly’s Voice- I would love to follow her on facebook and twitter to better understand how people with Autism feel and think and they way she explained it would never be found in a text book and says so much! Thank you Carly you are an inspiration and an important advocate for future knowledge of this condition- you have a gift!

 
Icon_missing_medium advocatefora... 1 post

I am very impressed by Carly’s ability to communicate her wants, needs, and opinions through her ipad/tablet. I was curious to know how a tablet or an ipad is developed so that my 3 Autistic children would be able to communicate the same way. Are there any apps for autistic children/teens?

 
Moderatoricon_medium TheDoctorsBo... 1472 posts

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