Understanding
Okur-Chung Neurodevelopmental Syndrome
An OCNDS Parent’s Experience at an Intensive Therapy Program at the Star Institute for Sensory Processing
By Keri Ninness
As we began to really prepare for Thomas to go to Public school for kindergarten, we asked his therapists where they saw his biggest areas of need. We then assessed where in our home his functioning was most impaired. While Thomas doesn’t have a full on Sensory Processing Disorder diagnosis, he has many traits of a child with it. Sensory seeking behavior, inability to regulate, auditory processing difficulties, poor postural position, poor fine motor skills, poor motor planning, all had us considering summer intensives. A friend who is an OT suggested her place of work, the Star Institute for Sensory Processing (Star) in Denver . Founded by Dr. Lucy Jane Miller (author of Sensational kids, The Out of Sync Child and various other publications) Star is leading the field in terms of research and diagnostics for kiddos with sensory challenges.
We had a thorough and impressive phone consultation with Andrea Stoker, manager of Star, and determined that a month of intensive therapy would benefit Thomas. Star was extremely helpful in coordinating all of the logistics and so accommodating as they knew I would be leaving our other 3 children for a month.
We arrived and underwent pre-testing and later highly advanced SP3D testing. We determined that what I believed all along were autism like traits were in fact more consistent with dyspraxia and postural disorder . We tweaked our focus from (our highly beneficial) ABA therapy to more OT and PT to help with ideation (so he didn’t get as rigid /inflexible with his ideas for a game or a play date), interventions for when he is dysregulated, and further assistance with his feeding difficulties. Star also discovered some ocular motor challenges and arranged for us to see a vision therapist at highly acclaimed Hellerstein Vision Center.
Thomas and I had daily one hour sessions of strategic play. While tiring for Mama, I learned how to expand and organize his ideas with statements like “I wonder if…” and “it seems like you want to…” Many days there were additional sessions for Thomas and also extraordinarily helpful parent sessions. I cried at most of these as it was abundantly clear that the goals for these sessions was to help me find more joy in parenting Thomas, something I wasn’t sure was possible. But a month later, we left with exactly that- more joy. I now have a toolbox full of interventions for meltdowns and moments of dysregulation . I know to limit the number of choices available to him and how a social story is vital to his day. More importantly, Thomas learned what to do when he feels angry or has big feelings . He has increased moments of self regulation and has a much increased emotional vocabulary. In addition, their constant use of the term “your body” made Thomas so much more aware of what his body was doing and needed which has helped in the ever present potty training struggles. Since Star, he frequently says “my body needs to go tee tee.” Initiating a restroom trip never happened before Star. Finally, the use of an integrated listening system has drastically increased his ability to tolerate accessory noise which I believe has been the biggest contributor to his successful start to kindergarten.
A large portion of Star’s kiddos are on the autism spectrum and there are additional programs for social skills. We utilized the OT component but friends also did their speech program, their highly regarded feeding program and their acclaimed bike camps teaching our often coordination challenged Kiddos how to ride.
All in all this was a massive undertaking that yielded promising results. I learned to truly play with and enjoy my son . What he learned wouldn’t fit on a page. We will hopefully return for a booster session next summer.
As an aside, there are Winter sessions as well as only weeklong summer sessions (which mostly just involves utilizing their testing and diagnostics for educational purposes at home.) There are also many grants available to offset the cost and our insurance company covered a portion as out of network benefits .
I’m happy to talk to anyone interested but highly recommend calling Andrea and just scheduling an intake. They do turn down families who aren’t appropriate for the program and truly want positive outcomes for your family.
As we began to really prepare for Thomas to go to Public school for kindergarten, we asked his therapists where they saw his biggest areas of need. We then assessed where in our home his functioning was most impaired. While Thomas doesn’t have a full on Sensory Processing Disorder diagnosis, he has many traits of a child with it. Sensory seeking behavior, inability to regulate, auditory processing difficulties, poor postural position, poor fine motor skills, poor motor planning, all had us considering summer intensives. A friend who is an OT suggested her place of work, the Star Institute for Sensory Processing (Star) in Denver . Founded by Dr. Lucy Jane Miller (author of Sensational kids, The Out of Sync Child and various other publications) Star is leading the field in terms of research and diagnostics for kiddos with sensory challenges.
We had a thorough and impressive phone consultation with Andrea Stoker, manager of Star, and determined that a month of intensive therapy would benefit Thomas. Star was extremely helpful in coordinating all of the logistics and so accommodating as they knew I would be leaving our other 3 children for a month.
We arrived and underwent pre-testing and later highly advanced SP3D testing. We determined that what I believed all along were autism like traits were in fact more consistent with dyspraxia and postural disorder . We tweaked our focus from (our highly beneficial) ABA therapy to more OT and PT to help with ideation (so he didn’t get as rigid /inflexible with his ideas for a game or a play date), interventions for when he is dysregulated, and further assistance with his feeding difficulties. Star also discovered some ocular motor challenges and arranged for us to see a vision therapist at highly acclaimed Hellerstein Vision Center.
Thomas and I had daily one hour sessions of strategic play. While tiring for Mama, I learned how to expand and organize his ideas with statements like “I wonder if…” and “it seems like you want to…” Many days there were additional sessions for Thomas and also extraordinarily helpful parent sessions. I cried at most of these as it was abundantly clear that the goals for these sessions was to help me find more joy in parenting Thomas, something I wasn’t sure was possible. But a month later, we left with exactly that- more joy. I now have a toolbox full of interventions for meltdowns and moments of dysregulation . I know to limit the number of choices available to him and how a social story is vital to his day. More importantly, Thomas learned what to do when he feels angry or has big feelings . He has increased moments of self regulation and has a much increased emotional vocabulary. In addition, their constant use of the term “your body” made Thomas so much more aware of what his body was doing and needed which has helped in the ever present potty training struggles. Since Star, he frequently says “my body needs to go tee tee.” Initiating a restroom trip never happened before Star. Finally, the use of an integrated listening system has drastically increased his ability to tolerate accessory noise which I believe has been the biggest contributor to his successful start to kindergarten.
A large portion of Star’s kiddos are on the autism spectrum and there are additional programs for social skills. We utilized the OT component but friends also did their speech program, their highly regarded feeding program and their acclaimed bike camps teaching our often coordination challenged Kiddos how to ride.
All in all this was a massive undertaking that yielded promising results. I learned to truly play with and enjoy my son . What he learned wouldn’t fit on a page. We will hopefully return for a booster session next summer.
As an aside, there are Winter sessions as well as only weeklong summer sessions (which mostly just involves utilizing their testing and diagnostics for educational purposes at home.) There are also many grants available to offset the cost and our insurance company covered a portion as out of network benefits .
I’m happy to talk to anyone interested but highly recommend calling Andrea and just scheduling an intake. They do turn down families who aren’t appropriate for the program and truly want positive outcomes for your family.