#AskMeWhatItIs
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- เผยแพร่เมื่อ 5 ก.ย. 2024
- This is the official video of the 2015 hashtag awareness campaign for Smith-Magenis Syndrome on World SMS Day, November 17th. #AskMeWhatItIs is intended to engage others in a dialogue about this rare and debilitating disorder. Parents and siblings are featured in this video sharing what they wish other people understood about Smith-Magenis Syndrome, including common characteristics, challenges and positive traits
. Help us spread the word and share with your friends and family. For more information, please visit: www.smsresearchfoundation.org
I still can't watch this without tearing up
The truth I find in this video is amazing, I feel as if no one knows how isolated we truly feel, everyone has an opinion on what I should do with my child, but literally, know one understands. thank you for this video , and we'll for making me cry.
This is amazing and beautiful and so valuable and so important for me right now. Thank you!
Thanks for creating this video. I learned a lot.
+Deborah Portnoy Thanks so much for taking the time to watch and comment!:-)
I love this. Our kids are absolutely amazing and have so much determination.
I am a proud momma to a boy with SMS.
+Chelsea Massey thank you! They really are :-)
I am so glad to have found this video, I am at lost with my daughter who suffers from SMS. This just encouraged me and feel like there're many people who are experiencing what I am going through.
💖💖💖💖💖
What do we do when they bigger
dschaechter1
I am a direct care provider that has been sharing life and caring for a 44yr old man with sms. It's very difficult. What i can share that might help is...routine...routine is very helpful. It is not the answer to solve the behaviors completely..behaviors and out bursts and aggression can still come out. But a structured routine helps i believe. The organization i am involved with started to use hwc( handle with care) to help with the aggression and behaviors. It involves verbal steps when in a crisis but also a physical restraint technic..do not be alarmed by the " restraint" part. It is the safest and most secure restraint technic i have ever seen or used. Their website has testimonial from teachers of special needs classroom with kids on the autism spectrum and they have said the hwc prt( primary restraint technic) is used as therapeutic for some want that sort of constraint therapy. It's hard. It is. But with routine , structure and the use of hwc during the behaviors helps have a basic and normal life. But it is tough, as ive said, the guy i help is 44 and still has outburst. Use the gym..help them get that energy out . hope my input helps.
when they get older they will become less agressive . still it will remain a human being that needs very much structure