Giving Alaska a reason to talk.
Donation protected
As many of you know our daughter Alaska Athena Anastasia Johanson will be 3 on June 1st.
She has been diagnosed with a severe global developmental delay and is currently provisionally being treated for autism tendencies, while waiting on a permanent diagnosis at age 4. She has been in continuous therapy since 7 months old 4 times a week: 4 speech, 1 occupational therapy, and 1 physical therapy. She has had low muscle tone since birth making it impossible for normal developmental steps such as rolling over, sitting up, crawling, or walking. Finally, around 12-16 months she met all of those goals. The therapist told me not to worry that once her motor skills caught up that her language would soon follow, but unfortunately this has not been the case. She has never said mama or dada or any syllable. Not talking would seem typically unimportant because the average child would point, motion, grab, or at the very least cry. Alaska not only doesn’t talk or make any intentional coherent sounds but she also exhibits zero communication of any kind. She has never pointed, grabbed, motioned, or even made direct eye contact with anything she desired. She has never been able to successfully indicate to anyone that she was hungry, thirsty, or had a messy diaper. She almost never cries unless she physically hurts herself, usually from climbing on furniture. This lack of communication has changed how she is cared for, you have to assume she is always hungry, thirsty and has a wet diaper. As far as reacting to her own name it’s 50/50, she is more likely to turn around if you stomp your foot on the ground because she gets not only the startling sound but also the vibration. She is capable of melting any heart with as little as a smirk, half a smile and a millisecond of eye contact. Unfortunately at this point that’s all she has to give to most. She may even grunt with frustration while trying to get away. But it’s the ones who are able to place their personal feelings of immediate rejection aside and choose to try to understand she isn’t like us, she is special. If you do give her as many tries as it takes even if that takes all day, a week, or even a month, Alaska has always eventually come around to the point of reciprocation. If you’re ever lucky enough to get the entire smile, the gut laughter, the joy of tickles, the embrace of her hug and love your life will truly never be the same, her inability to fake emotions assure each and every person she embraces that her love and acceptance is real.
With all our efforts of therapy we have seen very little progress. We have been told by every doctor, specialist and therapist our best hope is to enroll Alaska into daycare with children her own age whom already talk that are also integrated with children with disabilities so her needs are met. This may strongly encourage her to talk or at the very least try to communicate with the other kids on a daily basis which will also help her at home.
Integrated daycare near Atlantic station has only one location: Bright Horizons. Weekly dues: $416.00. Requires participants to pay in full for the month by the Friday before the Monday they start.
At this time we can not afford this monthly expense but hope that all changes after Kiel gets his Bar results in June 2018.
Any help is greatly appreciated.
If you’re unable to donate pls share!
Respectfully, The Johansons.
https://www.brighthorizons.com/about-us/child-care-news/bright-horizons-offers-new-program-for-children-with-special-needs
She has been diagnosed with a severe global developmental delay and is currently provisionally being treated for autism tendencies, while waiting on a permanent diagnosis at age 4. She has been in continuous therapy since 7 months old 4 times a week: 4 speech, 1 occupational therapy, and 1 physical therapy. She has had low muscle tone since birth making it impossible for normal developmental steps such as rolling over, sitting up, crawling, or walking. Finally, around 12-16 months she met all of those goals. The therapist told me not to worry that once her motor skills caught up that her language would soon follow, but unfortunately this has not been the case. She has never said mama or dada or any syllable. Not talking would seem typically unimportant because the average child would point, motion, grab, or at the very least cry. Alaska not only doesn’t talk or make any intentional coherent sounds but she also exhibits zero communication of any kind. She has never pointed, grabbed, motioned, or even made direct eye contact with anything she desired. She has never been able to successfully indicate to anyone that she was hungry, thirsty, or had a messy diaper. She almost never cries unless she physically hurts herself, usually from climbing on furniture. This lack of communication has changed how she is cared for, you have to assume she is always hungry, thirsty and has a wet diaper. As far as reacting to her own name it’s 50/50, she is more likely to turn around if you stomp your foot on the ground because she gets not only the startling sound but also the vibration. She is capable of melting any heart with as little as a smirk, half a smile and a millisecond of eye contact. Unfortunately at this point that’s all she has to give to most. She may even grunt with frustration while trying to get away. But it’s the ones who are able to place their personal feelings of immediate rejection aside and choose to try to understand she isn’t like us, she is special. If you do give her as many tries as it takes even if that takes all day, a week, or even a month, Alaska has always eventually come around to the point of reciprocation. If you’re ever lucky enough to get the entire smile, the gut laughter, the joy of tickles, the embrace of her hug and love your life will truly never be the same, her inability to fake emotions assure each and every person she embraces that her love and acceptance is real.
With all our efforts of therapy we have seen very little progress. We have been told by every doctor, specialist and therapist our best hope is to enroll Alaska into daycare with children her own age whom already talk that are also integrated with children with disabilities so her needs are met. This may strongly encourage her to talk or at the very least try to communicate with the other kids on a daily basis which will also help her at home.
Integrated daycare near Atlantic station has only one location: Bright Horizons. Weekly dues: $416.00. Requires participants to pay in full for the month by the Friday before the Monday they start.
At this time we can not afford this monthly expense but hope that all changes after Kiel gets his Bar results in June 2018.
Any help is greatly appreciated.
If you’re unable to donate pls share!
Respectfully, The Johansons.
https://www.brighthorizons.com/about-us/child-care-news/bright-horizons-offers-new-program-for-children-with-special-needs
Organiser
Miranda Lynn Keller Johanson
Organiser
Atlanta, GA
