Meet Danniah, who is sometimes also known as "Peanut"
Danniah (pronounced "Dahnya" or "Donya") was born on April 18, 2007 at 8:00pm on the nose. A perfect little girl weighing in at 7lbs 13oz with a full head of dark hair, she blessed our world in more ways than we had ever imagined possible. How we love watching her grow! Her bright twinkling eyes and full belly laughs delighted everyone who came near her (still do!).
She was a happy baby, who was so alert, even as a two week old newborn. People would comment on how alert she seemed, with her beautiful blue eyes peering around the room and searching people's faces.
As happy and beautiful as she was, I couldn't help but feel that she was extremely sensitive... I had this sense that I needed to be really careful with her. When she was eight months old, she had trouble transitioning to table foods. She also seemed to react to foods with bloating, constipation and stomach pain. By the time she was a year old, when you would expect a baby to have easily transitioned to table foods, Danniah gagged and choked on everything that was not finely pureed. She could not move food from one side of her mouth to the other and she could not chew. She also did not sleep well.
She was a happy baby, who was so alert, even as a two week old newborn. People would comment on how alert she seemed, with her beautiful blue eyes peering around the room and searching people's faces.
As happy and beautiful as she was, I couldn't help but feel that she was extremely sensitive... I had this sense that I needed to be really careful with her. When she was eight months old, she had trouble transitioning to table foods. She also seemed to react to foods with bloating, constipation and stomach pain. By the time she was a year old, when you would expect a baby to have easily transitioned to table foods, Danniah gagged and choked on everything that was not finely pureed. She could not move food from one side of her mouth to the other and she could not chew. She also did not sleep well.
Turning 1
At her first birthday, Danniah was interested and social with all the guests...except when it was time to sing and have cake. She smiled gleefully as everyone sang happy birthday, but when presented with her "smash cake," she could only hum and smear frosting on the table. She would not make eye contact or invite others into her world-she was focused exclusively on smearing frosting. We began noticing that whenever something was in front of her, be it blocks or food, she would not make eye contact and include us in her world. We also noticed that the beautiful fund of sounds she had been using in her babble had diminished. Her beautiful, varied babble was replaced by a low guttural hum, that we later learned soothed her reflux pain and provided her with a vibration that was soothing to her.
At 13 months old we called in a feeding specialist to help with her food challenges. The occupational therapist was wonderful, teaching us how to do oral motor therapy at home. Over time, Danniah learned to chew and move food from one side of her mouth to the other. But the foods she would eat were extremely limited. She was not talking and although she was walking, her body was wobbly and seemed almost like jello. When she walked she kept her upper body stiff and she would never bend.
At 13 months old we called in a feeding specialist to help with her food challenges. The occupational therapist was wonderful, teaching us how to do oral motor therapy at home. Over time, Danniah learned to chew and move food from one side of her mouth to the other. But the foods she would eat were extremely limited. She was not talking and although she was walking, her body was wobbly and seemed almost like jello. When she walked she kept her upper body stiff and she would never bend.
Evaluations
Eventually, Danniah was put on compounded Prevacid after a full evaluation at the Aerodysphagia Team at Mass General Hospital. Within a week she was walking better, bending and twisting. She also started eating more, although the variety was greatly lacking.
Although she was social and had eye contact, she had significant fine motor, gross motor, language and play skill delays. She still did not sleep well. She would be up for several hours in the middle of the night almost every night. At 18 months we had her evaluated at the Mass General for Children's Ladders Program (now known as The Lurie Center for Autism). Initially we were given a Sensory Integration Dysfunction Diagnosis along with "developmental language delay, play skill delay, fine motor delay and hypotonia." We worked hard to understand Sensory Processing Disorder and meet her sensory needs.To learn more about what we did to meet her sensory needs you can read a blog I recently wrote about it. At the time the doctor was hesitant to give us a diagnosis on the spectrum because she "has excellent eye contact and wonderful social referencing."
As time went on, her eye contact fluctuated. She remained happy, affectionate, and interested in others, but also very delayed and nonverbal. She still could not stack blocks or follow even simple directions. By the time she was two the neurologist finally gave us the diagnosis of PDD NOS or Autism with Atypical Features (due to her good eye contact and social referencing).
Although she was social and had eye contact, she had significant fine motor, gross motor, language and play skill delays. She still did not sleep well. She would be up for several hours in the middle of the night almost every night. At 18 months we had her evaluated at the Mass General for Children's Ladders Program (now known as The Lurie Center for Autism). Initially we were given a Sensory Integration Dysfunction Diagnosis along with "developmental language delay, play skill delay, fine motor delay and hypotonia." We worked hard to understand Sensory Processing Disorder and meet her sensory needs.To learn more about what we did to meet her sensory needs you can read a blog I recently wrote about it. At the time the doctor was hesitant to give us a diagnosis on the spectrum because she "has excellent eye contact and wonderful social referencing."
As time went on, her eye contact fluctuated. She remained happy, affectionate, and interested in others, but also very delayed and nonverbal. She still could not stack blocks or follow even simple directions. By the time she was two the neurologist finally gave us the diagnosis of PDD NOS or Autism with Atypical Features (due to her good eye contact and social referencing).
Knowledge is power.
Once we had the diagnosis, we turned our lives upside down and inside out looking for treatments. Once we started some of the more mainstream treatments, we saw our affectionate, happy little girl begin to get aggressive and at times disinterested in us. As she got older and as other kids her age developed complex language that she could not follow or participate in, she lost interest in them as well.
At the same time we began learning more about some of her medical issues (GI problems, food allergies and intolerances, mitochondrial dysfunction, pancreatic enzyme deficiencies, fragrance and chemical sensitivities...). It became very clear to us that we had a pretty uncomfortable and increasingly disconnected child who could not communicate reciprocally with us.
At the same time we began learning more about some of her medical issues (GI problems, food allergies and intolerances, mitochondrial dysfunction, pancreatic enzyme deficiencies, fragrance and chemical sensitivities...). It became very clear to us that we had a pretty uncomfortable and increasingly disconnected child who could not communicate reciprocally with us.
Fast Forward
There were many sleepless nights and heart wrenching days as we worried about how to get our daughter back. Would she ever talk? Will she be okay? Is she in a lot of pain? How can we help her?
We have been blessed with several dedicated doctors who have expertly guided her medical treatment, which has helped a great deal. We scoured the internet, talked to many parents and researched and read and read and read some more. We began meeting people who recovered their children, which gave us profound hope. In my heart of hearts I believe full recovery is possible for Danniah.
We tried several things that brought gains including jump-starting her language (she was nonverbal until she was three years old). But we were clearly stuck. Exhausted, worried, burnt out and tired of seeing Danniah unhappy with ABA and FloorTime strategies at home, we finally found Son-Rise! Son-Rise breathed some desperately needed oxygen and life into us. As soon as I began talking to people at the Autism Treatment Center of America I just knew we had found the right program. Sitting in Start-Up this past February was life changing. In so many ways, Son-Rise took the principles that I had integrated into my life pre-autism and helped me adapt them to life with autism. The best part? Danniah responded right away!
I went to Start-Up two months before Sam went and began implementing the Son-Rise lifestyle as soon as I got home. I used the techniques that I'd learned to foster language development and was absolutely giddy to see Danniah move from one word requests to four and five word requests in the course of just one week! She began spelling words with foam letters, singing whole songs and her speech was clearer and easier to understand. The real validation came at her school, when the teachers there noticed gains in her language and over all sense of happiness. She was more relaxed and more flexible. Our little girl is beginning to really blossom!
We are so excited to see what's next as we implement the Son-Rise Program more fully!
Stay Tuned for updates!!
We have been blessed with several dedicated doctors who have expertly guided her medical treatment, which has helped a great deal. We scoured the internet, talked to many parents and researched and read and read and read some more. We began meeting people who recovered their children, which gave us profound hope. In my heart of hearts I believe full recovery is possible for Danniah.
We tried several things that brought gains including jump-starting her language (she was nonverbal until she was three years old). But we were clearly stuck. Exhausted, worried, burnt out and tired of seeing Danniah unhappy with ABA and FloorTime strategies at home, we finally found Son-Rise! Son-Rise breathed some desperately needed oxygen and life into us. As soon as I began talking to people at the Autism Treatment Center of America I just knew we had found the right program. Sitting in Start-Up this past February was life changing. In so many ways, Son-Rise took the principles that I had integrated into my life pre-autism and helped me adapt them to life with autism. The best part? Danniah responded right away!
I went to Start-Up two months before Sam went and began implementing the Son-Rise lifestyle as soon as I got home. I used the techniques that I'd learned to foster language development and was absolutely giddy to see Danniah move from one word requests to four and five word requests in the course of just one week! She began spelling words with foam letters, singing whole songs and her speech was clearer and easier to understand. The real validation came at her school, when the teachers there noticed gains in her language and over all sense of happiness. She was more relaxed and more flexible. Our little girl is beginning to really blossom!
We are so excited to see what's next as we implement the Son-Rise Program more fully!
Stay Tuned for updates!!