Monday, January 14, 2013

Guest Blogger: Victoria's Favorite Apps


Hello my name is Christina Yauch. My daughter, Victoria, was diagnosed with Cri Du Chat Syndrome at a six month well visit in December 2010. Cri Du Chat is a very rare chromosomal anomaly and most doctors have never seen a case of Cri Du Chat.

Each year in the United States, approximately 50 to 60 children are born with 5p- Syndrome (five p minus), also known as Cat Cry Syndrome or Cri du Chat Syndrome. 5p- Syndrome is characterized at birth by a high pitched cry, low birth weight, poor muscle tone, microcephaly, and potential medical complications. "5p-" is a term used by geneticists to describe a portion of chromosome number five that is missing in these individuals. Children born with this rare genetic defect will most likely require ongoing support from a team of parents, therapists, and medical and educational professionals to help the child achieve his or her maximum potential. Years ago, it was common to place children with 5p- Syndrome in institutions with other severely mentally impaired individuals. During the early 1980s, research revealed that those raised in family settings with the benefit of early intervention programs made remarkable progress, far exceeding the expectations of doctors who first described the syndrome. Most individuals who have 5p- Syndrome have difficulty with language. Nearly all children with 5p- Syndrome have poor muscle tone when they are young. Other characteristics may include feeding difficulties, delays in walking, hyperactivity, scoliosis, and significant mental impairment. Both children and adults with this syndrome are usually friendly, happy, and enjoy social interaction. With early and consistent educational intervention, as well as physical and language therapy, children with 5p- Syndrome are capable of reaching their fullest potential and can lead full and meaningful lives. (Taken from 5p- Society Website)

Victoria has been using an iPad since she was about 8 months old. It has been a wonderful experience for the whole family. She uses the iPad to teach basic cause and effect skills and as a motivator during PT and OT sessions. She is also learning communication through choice making apps and the yes/no app. Victoria uses the Talkboard app to let us know she wants to eat or drink. We created a board with a picture of a bowl, a toy, and a photo of herself. If she is hungry, she taps the bowl and it repeats back to her "breakfast" I love the app because it's easy to use and adapt to your child's needs. We use the same app to involve Victoria in repetitive stories. I am also planning on making her a photo album with the entire family's photos using the My Family app. The My Family app allows you to add photos along with a recording of the name of the person in the picture. She can tap the photo to move through the album.

 

Victoria is doing extremely well with the iPad and I am very happy we introduced her to it so early. She had really progressed since the introduction of the iPad. It is so versatile, in that it can be used for entertainment, learning, communication, etc. I really like the fact that it can grow with the child. You can download the appropriate apps for your child's age and cognitive level. Victoria's favorite apps are listed below:

 


 


 


 


 


 


 


 


 


 


 


 


 


 


 



 


 


 

We have been devastated, humbled, and blessed since her diagnosis. Victoria is a beautiful, happy baby who lights up the room with her smile and giggles. She has taught everyone around her more in her short life of 20 months than most will teach their entire lives. She continues to progress and surprise us every day. Through her hard work and the hard work of her phenomenal therapists, Victoria is already surprising the medical community with her accomplishments. She is absolutely amazing and makes an impact on everyone who meets her. To learn more about Cri Du Chat Syndrome, please visit www.fivepminus.org .


 

7 comments:

  1. Great to see this post, thankyou! I've been reading this blog specifically to get app ideas for my own little girl with Cri du Chat, Amelia. Thanks for the pointers!

    For anyone in the UK, our equivalent of the 5p- group is http://criduchat.org.uk.

    ReplyDelete


  2. When we talk about online drumming, we mean that you can
    be in our studio during the recording session without
    leaving your home. How? Using our Interactive Virtual
    Online Session (IVOS) you can listen to Goran's studio
    drumming in real time in high quality stereo and talk
    with him. There is no need to go back and forth and waste
    days with revisions. You'll get the perfect take within
    20min. And there is no software to download or additional
    fee to pay. It is all incorporated into our online platform.

    online session drums
    online session drummer
    online drum tracks

    ReplyDelete
  3. Thank you for this list!! We use many of these apps and Peekaboo Barn is my son's favorite!! Some other apps that we love that may be helpful...Phonto allows you to add text to photos and we use it to share info with friends, school, etc. We also just bought Tap n See Zoo which we found from a link through this blog!! Our son has right sided open lip schizencephaly, epilepsy and vision impairments. Thank you so much for all this blog does!!!

    ReplyDelete
  4. This is such great information. Thanks for sharing your story. I'm sure that with the pace tablets are growing, more advanced apps will soon be available to help children develop even further. Do you have any updates on how Victoria is doing?

    ReplyDelete
  5. Good job with the post!
    This is something that I had never heard about. Thank you so much for sharing your story with us.
    www.studyart.com.au

    ReplyDelete
  6. Hi There! Nice blog to read about the iPhone App Development , Iphone apps developers etc. It’s Really Helpful for people who interested in iOS and Android Application Development. Thanks for sharing such useful information with us.

    ReplyDelete