Saturday, November 17, 2018
Housing at last! David's SLS program can finally begin! / ¡El nuevo programa de David puede comenzar!
(Post #2)
Congratulations, David!
After nearly two years of waiting on lists for "affordable housing", David's name finally rose to the top of a "Project Based Section 8" list and he's moving into his own home. Wow! So many stops and starts, and lessons learned along the way (which I shall share in my later Kindle publication).
In the meantime, he and I are training his new staff to take over for me on December 1st... at the same time as preparing him to move... and, of course, I will no longer qualify to live in our current housing, so I'm moving too...
As I said: "Wow!"
🙂
_______________________________________________________________________________
Después de casi dos años de espera en las listas de "viviendas asequibles", el nombre de David finalmente llegó a la cima de una lista de "Sección 8 basada en proyectos" y se mudará a su propia casa. ¡Guauu! Tantas paradas y comienzos, y lecciones aprendidas en el camino (que compartiré en mi publicación de libro posterior).
Mientras tanto, él y yo estamos entrenando a su nuevo personal para que se haga cargo de el el 1 de diciembre ... al mismo tiempo que lo preparamos para mudarse ... y, por supuesto, ya no calificaré para vivir en nuestro actual vivienda, así que también me mudo ...
Como dije: "¡Guau!"
(Post #2)
The Autism Spectrum ranges from "Level 1" (requiring some support) through "Level 3" (requiring very substantial support). My son, David M. Nisson, PhD, is at "Level 2" (requiring substantial support). He dreamed of earning college degrees in Experimental Physics, but only wealthy "Twice Exceptional" students could afford this. It's against my religious values to ignore "Talents", so, with my support, David went on to complete a Ph.D. at UC Davis Physics and contribute to the all-important world of scientific research. This blog serves both as a reference for the increasing numbers of parents following in my footsteps, and a warning that in addition to advocating for academic accommodations and arranging behavior programs, parents must also spend time studying medical issues that seem minor during childhood, and to
participate now in the reform efforts of crucial national agencies like SSA and HUD, and those of your city, county and state government to protect your sons' or daughters' futures.
Tuesday, August 21, 2018
A Model of a Coordinated Care treatment plan/ Un Modelo de un Plan de Tratamiento de Atención Coordinada
Many Autistic individuals have anxiety, (Kim, et al) and many anxiety sufferers in turn suffer from "acid reflux disease" or "GERD". (Javadi and Shafikhani) And, when you put these two together, you often get "PVFM".
My son, savant autistic software developer, David Nisson, PhD has struggled with these challenges for years. To defeat an enemy, we first must name it, so I call it the "Vicious Cycle of Co-Occurring Conditions".
_____________________________________________________________________________
Muchas personas autistas tienen ansiedad y muchas personas que padecen ansiedad a su vez sufren de "enfermedad por reflujo ácido" o "ERGE". Cuando juntas estos dos, a menudo obtienes "PVFM".
Mi hijo, desarrollador de software con autismo avancado, David Nisson, PhD ha luchado con estos desafíos durante años. Para derrotar a un enemigo, primero debemos nombrarlo, así que lo llamo el "Ciclo Vicioso de las Condiciones Co-Ocurrentes". Echa un vistazo a los diagramas que creé en esta página.
___________________________________________________________________________________
Diagram #1:
Is this happening to you, or to someone you know?
If so, you might want to keep reading::
My son, savant autistic software developer, David Nisson, PhD has struggled with these challenges for years. To defeat an enemy, we first must name it, so I call it the "Vicious Cycle of Co-Occurring Conditions".
_____________________________________________________________________________
Muchas personas autistas tienen ansiedad y muchas personas que padecen ansiedad a su vez sufren de "enfermedad por reflujo ácido" o "ERGE". Cuando juntas estos dos, a menudo obtienes "PVFM".
Mi hijo, desarrollador de software con autismo avancado, David Nisson, PhD ha luchado con estos desafíos durante años. Para derrotar a un enemigo, primero debemos nombrarlo, así que lo llamo el "Ciclo Vicioso de las Condiciones Co-Ocurrentes". Echa un vistazo a los diagramas que creé en esta página.
___________________________________________________________________________________
Diagram #1:
Is this happening to you, or to someone you know?
If so, you might want to keep reading::
Autistic adults David's age or older (he's 30) are burdened by having been raised in a time of ignorance regarding developmental disabilities. All young mothers complain about their babies' and toddlers' inability to communicate medical discomfort, and rejoice when their kids get old enough to finally describe what's bothering them, instead of just crying all the time.
But, when I was a young mother of an autistic kid, my friends and I complained about having to wait until later before our children could accurately describe medical symptoms to us, and to their doctors. We were left to guess at problems simply through observation. Today, the medical community understands and honors that, because physicians only see patients occasionally, the opinions of family members are crucial to doctors. However, David Nisson, was a child during the final age of doctors maintaining an authoritative attitude toward parents. This created a problem that wasn't resolved until he was 25 years old.
Since his earliest days on earth, David had a problem with his throat that caused him to have occasional, frightening-to-observe choking experiences, often after taking a sip of water. Of course, it never happened in the actual doctor's office. So, they didn't take me seriously. "Stop worrying so much". "You're just imagining things, Ms. Nisson". Those of you with gray hairs and crows feet remember the drill.
I'm not claiming those doctors were evil. Not at all. In fact, I will always be very grateful to the wonderful Dr. Robert Peterson of the former Roseville Pediatrics, who informed me about the Alta California Regional Center. Oh my goodness! The word helpful doesn't begin to describe how essential to David's success the support of ACRC has proven!
No, the doctors weren't to blame, although I'm glad that society has changed so that they're no longer allowed to speak down to their patients. Rather, the problem was that the severe form of acid reflux disease known as "GERD" hadn't yet been studied; neither had "PVFM". In fact, only now are medical researchers and physicians learning to distinguish between asthma and PVFM (paradoxical vocal fold motion disorder). (Please share this article widely with others: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2599980/
So, David wasn't diagnosed with the separate diagnoses of "Panic Disorder"/"Anxiety Disorder" of "GERD" and of "PVFM" until adulthood. Just five years ago the well-informed MD's, Dr. Mark Ewens and Dr. Stephen Nowicki- foremost in their specialties- discovered that David's anxiety and throat-discomfort issues were a result of two separate illnesses: "Panic Disorder" and "GERD". It turns out that the name of the frightening-looking wheezing type episode observed most commonly when David drank water is called "laryngospasm", or "stridor". Fortunately, at long last, in his mid twenties, David was able to speak about his symptoms directly to his physician, Dr. Ewens. The doctor took David seriously, and referred him to an ENT specialist, Dr. Steven Wright, OD. Dr. Wright immediately recognized the problem as the newly discovered phenomenon called "PVFM". and formally diagnosed David with this disease. The fact that Dr. Wright knew about PVFM spoke volumes regarding his trustworthiness. What a well-informed, on-the-ball doc!
Right?
_________________________________________________________________________________
¿Te está sucediendo esto a ti o a alguien que conoces?
Si es así, es posible que desee seguir leyendo ::
Padres con hijos autisticos que tienen 30 años o mas estuvieran agobiados con la ignorancia de los doctores con respecto a las discapacidades del desarrollo. Todas las madres jóvenes se quejan de la incapacidad de sus bebés y niños pequeños para comunicar molestias médicas, y se regocijan cuando sus hijos son lo suficientemente mayores como para finalmente describir lo que les molesta, en lugar de solo llorar todo el tiempo.
Pero, cuando era una joven madre de un niño autista, mis amigos y yo nos quejamos de tener que esperar hasta más tarde antes de que nuestros hijos pudieran describirnos con precisión los síntomas médicos a nosotros y a sus médicos. Nos dejaron adivinar los problemas simplemente a través de la observación. Hoy, la comunidad médica comprende y honra que, dado que los médicos solo ven a los pacientes ocasionalmente, las opiniones de los miembros de la familia son cruciales para los médicos. Sin embargo, David Nisson, era un niño durante la edad final de los médicos que mantenían una actitud autoritaria hacia los padres. Esto creó un problema que no se resolvió hasta que tenía 25 años.
Desde sus primeros días en la tierra, David tuvo un problema con su garganta que le causó experiencias ocasionales y atemorizantes de observar, a menudo después de tomar un sorbo de agua. Por supuesto, nunca sucedió en el consultorio del médico real. Entonces, no me tomaron en serio. "Deja de preocuparte tanto". "Solo está imaginando cosas, Sra. Nisson". Aquellos de ustedes con canas y patas de gallo recuerdan el ejercicio.
No estoy afirmando que esos doctores fueran malvados. De ningún modo. De hecho, siempre estaré muy agradecido con el maravilloso Dr. Robert Peterson de la antigua Pediatría de Roseville, quien me informó sobre el Centro Regional de Alta California. ¡Oh Dios mío! ¡La palabra útil no comienza a describir cuán esencial para el éxito de David ha demostrado el apoyo de ACRC!
No, los médicos no fueron los culpables, aunque me alegro de que la sociedad haya cambiado para que ya no se les permita hablar con sus pacientes. Más bien, el problema era que la forma grave de la enfermedad de reflujo ácido conocida como "ERGE" aún no se había estudiado; ninguno tenía "PVFM". De hecho, solo ahora los investigadores médicos y los médicos están aprendiendo a distinguir entre asma y PVFM (trastorno paradójico del movimiento de las cuerdas vocales). (Comparta este artículo ampliamente con otros: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2599980/
Entonces, a David no se le diagnosticaron los diagnósticos separados de "trastorno de pánico" / "trastorno de ansiedad" de "ERGE" y de "PVFM" hasta la edad adulta. Hace apenas cinco años, los médicos bien informados, el Dr. Mark Ewens y el Dr. Stephen Nowick, principalmente en sus especialidades, descubrieron que los problemas de ansiedad y malestar de garganta de David eran el resultado de dos enfermedades separadas: "trastorno de pánico" y "ERGE". . Resulta que el nombre del episodio de tipo sibilante de aspecto aterrador que se observa con mayor frecuencia cuando David bebió agua se llama "laringoespasmo" o "estridor". Afortunadamente, por fin, a mediados de sus veintes, David pudo hablar sobre sus síntomas directamente a su médico, el Dr. Ewens. El médico tomó a David en serio y lo remitió a un especialista en otorrinolaringología, el Dr. Steven Wright, OD. El Dr. Wright reconoció de inmediato el problema como el fenómeno recién descubierto llamado "PVFM". y diagnosticó formalmente a David con esta enfermedad. El hecho de que el Dr. Wright supiera sobre PVFM dijo mucho sobre su confiabilidad de el. ¡Qué tan bien informado este doctor es!
¿Correcto?
__________________________________________________________________________
But then, the good doctor did something strange. He referred David for treatment of this throat problem to a speech and language pathologist.
"Wait a minute, Doctor. I don't understand. Did you say speech and language specialists can treat this PVFM thing? Speech and language? Like in the public schools?"
"Not 'specialist'. 'Pathologist'. He'll help David. Trust me".
Pero entonces, el buen doctor hizo algo extraño. Remitió a David para el tratamiento de este problema de garganta a un patólogo del habla y el lenguaje.
Yo dije: "Espere un momento, doctor. No entiendo. ¿Dijo que los especialistas en solo habla y lenguaje pueden tratar esta cosa PVFM? ¿Lenguaje? ¿Como en las escuelas públicas?"
El doctor dijo: "No 'especialista'. 'Patólogo'. El yudará a David. Confía en mí".
Confiamos en él, y la vida de David ha sido excelente desde entonces. ¡El extraordinario patólogo del habla y lenguaje, Scott Jackson, cuya oficina se encuentra en Fairfield, California, es increíble! Las técnicas que este hombre le enseñó a David han funcionado como magia para detener esos espeluznantes episodios de "estridor" / "laringoespasmo" en el momento de comenzar. Esta es la clave para terminar el "Ciclo Vicioso" en el momento en que comienza. (Ver diagrama #2 arriba)
_________________________________________________________________________
But what about preventing the Vicious Cycle from starting in the first place?
Here's David's program:
1. He prevents the "GERD" from forming in his digestive system through carefully managed diet and exercise.
2. Anxiety also contributes to the GERD, so as with the PVFM, David's targeted his anxiety with help from the following team of psychological professionals.
(a) His autism/adhd specialist, Dr. Stephen Nowicki, worked with David on "CBT"-- a classic technique. Dr. Nowicki's help was irreplaceable and all-important. For those autistic people who have "just some anxiety" accompanying their autism, without it being the separate phenomenon of "Panic Disorder", basic "CBT" instruction is enough. However, for David, this wasn't enough.
(b) So, the wonderful "ACCESS" program at the UC Davis MIND Institute "put the icing onto the anxiety cake".
(c) As a followup to the ACCESS program, David was then blessed to spend a highly helpful year receiving further anxiety-management assistance from Garrett Gower, formerly of the MIND Institute.
(d) Today, David receives anxiety management assistance that is specifically in preparation for workplace success from the outstanding team at "Community and Employment Services" of the "Progressive Employment Concepts" program.
Some autistic people really do just have some mild anxiety and a few tummy troubles, which don't need separate diagnoses, and separate doctors. But, if these symptoms are dramatic, then I recommend requesting primary care doctors to refer you or your loved one to specialists who can check whether a separate diagnosis is called for. At one point, David had some symptoms indicating possible mild epilepsy, so David' doctor referred him to a neurologist, who took MRI's and did other diagnosing.
No epilepsy. Phew!
But, do you see how it was still better to have gotten the referral than not to do it?
In David's case, taking the step of creating a Coordinated Care team of specialists to target his anxiety, GERD, and PVFM has made all the difference for his happiness, his health, and therefore his success!
Do we frost the cake before, or after, placing it into the oven? First we bake that cake, let it cool, and then frost and decorate it. That may seem a silly analogy, but it's what my generation of parents did, and some young parents are still doing. In David's case, it wasn't until recently that we "baked" the PVFM, Anxiety, and GERD in "the oven" of a Coordinated Care team of specialists, before frosting it all with his IPP/ISP.
As always, it all comes back to the documents!
Once David and his IPP/ISP team understood about these co-occurring conditions, and then evaluated how they interact with David's autism, we were able to restructure his IPP/ISP goals.
But, when I was a young mother of an autistic kid, my friends and I complained about having to wait until later before our children could accurately describe medical symptoms to us, and to their doctors. We were left to guess at problems simply through observation. Today, the medical community understands and honors that, because physicians only see patients occasionally, the opinions of family members are crucial to doctors. However, David Nisson, was a child during the final age of doctors maintaining an authoritative attitude toward parents. This created a problem that wasn't resolved until he was 25 years old.
Since his earliest days on earth, David had a problem with his throat that caused him to have occasional, frightening-to-observe choking experiences, often after taking a sip of water. Of course, it never happened in the actual doctor's office. So, they didn't take me seriously. "Stop worrying so much". "You're just imagining things, Ms. Nisson". Those of you with gray hairs and crows feet remember the drill.
I'm not claiming those doctors were evil. Not at all. In fact, I will always be very grateful to the wonderful Dr. Robert Peterson of the former Roseville Pediatrics, who informed me about the Alta California Regional Center. Oh my goodness! The word helpful doesn't begin to describe how essential to David's success the support of ACRC has proven!
No, the doctors weren't to blame, although I'm glad that society has changed so that they're no longer allowed to speak down to their patients. Rather, the problem was that the severe form of acid reflux disease known as "GERD" hadn't yet been studied; neither had "PVFM". In fact, only now are medical researchers and physicians learning to distinguish between asthma and PVFM (paradoxical vocal fold motion disorder). (Please share this article widely with others: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2599980/
So, David wasn't diagnosed with the separate diagnoses of "Panic Disorder"/"Anxiety Disorder" of "GERD" and of "PVFM" until adulthood. Just five years ago the well-informed MD's, Dr. Mark Ewens and Dr. Stephen Nowicki- foremost in their specialties- discovered that David's anxiety and throat-discomfort issues were a result of two separate illnesses: "Panic Disorder" and "GERD". It turns out that the name of the frightening-looking wheezing type episode observed most commonly when David drank water is called "laryngospasm", or "stridor". Fortunately, at long last, in his mid twenties, David was able to speak about his symptoms directly to his physician, Dr. Ewens. The doctor took David seriously, and referred him to an ENT specialist, Dr. Steven Wright, OD. Dr. Wright immediately recognized the problem as the newly discovered phenomenon called "PVFM". and formally diagnosed David with this disease. The fact that Dr. Wright knew about PVFM spoke volumes regarding his trustworthiness. What a well-informed, on-the-ball doc!
Right?
_________________________________________________________________________________
¿Te está sucediendo esto a ti o a alguien que conoces?
Si es así, es posible que desee seguir leyendo ::
Padres con hijos autisticos que tienen 30 años o mas estuvieran agobiados con la ignorancia de los doctores con respecto a las discapacidades del desarrollo. Todas las madres jóvenes se quejan de la incapacidad de sus bebés y niños pequeños para comunicar molestias médicas, y se regocijan cuando sus hijos son lo suficientemente mayores como para finalmente describir lo que les molesta, en lugar de solo llorar todo el tiempo.
Pero, cuando era una joven madre de un niño autista, mis amigos y yo nos quejamos de tener que esperar hasta más tarde antes de que nuestros hijos pudieran describirnos con precisión los síntomas médicos a nosotros y a sus médicos. Nos dejaron adivinar los problemas simplemente a través de la observación. Hoy, la comunidad médica comprende y honra que, dado que los médicos solo ven a los pacientes ocasionalmente, las opiniones de los miembros de la familia son cruciales para los médicos. Sin embargo, David Nisson, era un niño durante la edad final de los médicos que mantenían una actitud autoritaria hacia los padres. Esto creó un problema que no se resolvió hasta que tenía 25 años.
Desde sus primeros días en la tierra, David tuvo un problema con su garganta que le causó experiencias ocasionales y atemorizantes de observar, a menudo después de tomar un sorbo de agua. Por supuesto, nunca sucedió en el consultorio del médico real. Entonces, no me tomaron en serio. "Deja de preocuparte tanto". "Solo está imaginando cosas, Sra. Nisson". Aquellos de ustedes con canas y patas de gallo recuerdan el ejercicio.
No estoy afirmando que esos doctores fueran malvados. De ningún modo. De hecho, siempre estaré muy agradecido con el maravilloso Dr. Robert Peterson de la antigua Pediatría de Roseville, quien me informó sobre el Centro Regional de Alta California. ¡Oh Dios mío! ¡La palabra útil no comienza a describir cuán esencial para el éxito de David ha demostrado el apoyo de ACRC!
No, los médicos no fueron los culpables, aunque me alegro de que la sociedad haya cambiado para que ya no se les permita hablar con sus pacientes. Más bien, el problema era que la forma grave de la enfermedad de reflujo ácido conocida como "ERGE" aún no se había estudiado; ninguno tenía "PVFM". De hecho, solo ahora los investigadores médicos y los médicos están aprendiendo a distinguir entre asma y PVFM (trastorno paradójico del movimiento de las cuerdas vocales). (Comparta este artículo ampliamente con otros: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2599980/
Entonces, a David no se le diagnosticaron los diagnósticos separados de "trastorno de pánico" / "trastorno de ansiedad" de "ERGE" y de "PVFM" hasta la edad adulta. Hace apenas cinco años, los médicos bien informados, el Dr. Mark Ewens y el Dr. Stephen Nowick, principalmente en sus especialidades, descubrieron que los problemas de ansiedad y malestar de garganta de David eran el resultado de dos enfermedades separadas: "trastorno de pánico" y "ERGE". . Resulta que el nombre del episodio de tipo sibilante de aspecto aterrador que se observa con mayor frecuencia cuando David bebió agua se llama "laringoespasmo" o "estridor". Afortunadamente, por fin, a mediados de sus veintes, David pudo hablar sobre sus síntomas directamente a su médico, el Dr. Ewens. El médico tomó a David en serio y lo remitió a un especialista en otorrinolaringología, el Dr. Steven Wright, OD. El Dr. Wright reconoció de inmediato el problema como el fenómeno recién descubierto llamado "PVFM". y diagnosticó formalmente a David con esta enfermedad. El hecho de que el Dr. Wright supiera sobre PVFM dijo mucho sobre su confiabilidad de el. ¡Qué tan bien informado este doctor es!
¿Correcto?
__________________________________________________________________________
But then, the good doctor did something strange. He referred David for treatment of this throat problem to a speech and language pathologist.
"Wait a minute, Doctor. I don't understand. Did you say speech and language specialists can treat this PVFM thing? Speech and language? Like in the public schools?"
"Not 'specialist'. 'Pathologist'. He'll help David. Trust me".
We did trust him, and David's life has been golden ever since. Speech and Language Pathologist Extraordinaire, Scott Jackson, whose office is in Fairfield, California, is amazing! The techniques this man taught David have worked like magic to stop those creepy "stridor"/"laryngospasm" episodes within moments of starting. This is the key to ending the "Vicious Cycle" the moment it starts. (See diagram #2)
Yo dije: "Espere un momento, doctor. No entiendo. ¿Dijo que los especialistas en solo habla y lenguaje pueden tratar esta cosa PVFM? ¿Lenguaje? ¿Como en las escuelas públicas?"
El doctor dijo: "No 'especialista'. 'Patólogo'. El yudará a David. Confía en mí".
Confiamos en él, y la vida de David ha sido excelente desde entonces. ¡El extraordinario patólogo del habla y lenguaje, Scott Jackson, cuya oficina se encuentra en Fairfield, California, es increíble! Las técnicas que este hombre le enseñó a David han funcionado como magia para detener esos espeluznantes episodios de "estridor" / "laringoespasmo" en el momento de comenzar. Esta es la clave para terminar el "Ciclo Vicioso" en el momento en que comienza. (Ver diagrama #2 arriba)
_________________________________________________________________________
But what about preventing the Vicious Cycle from starting in the first place?
Here's David's program:
1. He prevents the "GERD" from forming in his digestive system through carefully managed diet and exercise.
2. Anxiety also contributes to the GERD, so as with the PVFM, David's targeted his anxiety with help from the following team of psychological professionals.
(a) His autism/adhd specialist, Dr. Stephen Nowicki, worked with David on "CBT"-- a classic technique. Dr. Nowicki's help was irreplaceable and all-important. For those autistic people who have "just some anxiety" accompanying their autism, without it being the separate phenomenon of "Panic Disorder", basic "CBT" instruction is enough. However, for David, this wasn't enough.
(b) So, the wonderful "ACCESS" program at the UC Davis MIND Institute "put the icing onto the anxiety cake".
(c) As a followup to the ACCESS program, David was then blessed to spend a highly helpful year receiving further anxiety-management assistance from Garrett Gower, formerly of the MIND Institute.
(d) Today, David receives anxiety management assistance that is specifically in preparation for workplace success from the outstanding team at "Community and Employment Services" of the "Progressive Employment Concepts" program.
Some autistic people really do just have some mild anxiety and a few tummy troubles, which don't need separate diagnoses, and separate doctors. But, if these symptoms are dramatic, then I recommend requesting primary care doctors to refer you or your loved one to specialists who can check whether a separate diagnosis is called for. At one point, David had some symptoms indicating possible mild epilepsy, so David' doctor referred him to a neurologist, who took MRI's and did other diagnosing.
No epilepsy. Phew!
But, do you see how it was still better to have gotten the referral than not to do it?
In David's case, taking the step of creating a Coordinated Care team of specialists to target his anxiety, GERD, and PVFM has made all the difference for his happiness, his health, and therefore his success!
Do we frost the cake before, or after, placing it into the oven? First we bake that cake, let it cool, and then frost and decorate it. That may seem a silly analogy, but it's what my generation of parents did, and some young parents are still doing. In David's case, it wasn't until recently that we "baked" the PVFM, Anxiety, and GERD in "the oven" of a Coordinated Care team of specialists, before frosting it all with his IPP/ISP.
As always, it all comes back to the documents!
Once David and his IPP/ISP team understood about these co-occurring conditions, and then evaluated how they interact with David's autism, we were able to restructure his IPP/ISP goals.
Here's an image of David's "Vicious Cycle" of Co-Occurring Conditions. Is this happening to you, or to someone you know?
____________________________________________________________________
Pero, ¿qué hay de evitar que comience el ciclo vicioso en primer lugar?
Aquí está el programa de David:
1. David evita que se forme la "ERGE" en su sistema digestivo de el a través de una dieta y ejercicio cuidadosamente administrados.
2. La ansiedad también contribuye a la ERGE, por lo que con el PVFM, David evita su ansiedad con la ayuda del siguiente equipo de profesionales psicológicos.
(a) Su especialista en autismo / TDAH, el Dr. Stephen Nowicki, trabajó con David en "TCC", una técnica clásica. La ayuda del Dr. Nowicki fue insustituible y muy importante. Para aquellas personas autistas que tienen "solo un poco de ansiedad" que acompaña a su autismo, sin que sea el fenómeno separado del "trastorno de pánico", la instrucción básica de "TCC" es suficiente. Sin embargo, para David, esto no fue suficiente.
(b) Entonces, el maravilloso programa "ACCESS" en el UC MIND Institute de UC Davis "puso la guinda del pastel de ansiedad".
(c) Como seguimiento del programa ACCESS, David tuvo la bendición de pasar un año muy útil recibiendo más asistencia para el manejo de la ansiedad por parte de Garrett Gower, anteriormente del Instituto MIND.
(d) Hoy, David recibe asistencia para el manejo de la ansiedad que está específicamente en preparación para el éxito en el lugar de trabajo del equipo sobresaliente en "Community and Employment Services" del programa "Progressive Employment Concepts".
Algunas personas autistas realmente tienen un poco de ansiedad leve y algunos problemas estomacales, que no necesitan diagnósticos separados y médicos separados. Pero, si estos síntomas son dramáticos, entonces recomiendo solicitar a los médicos de atención primaria que lo remitan a usted oa su ser querido a especialistas que puedan verificar si se requiere un diagnóstico por separado. En un momento, David tenía algunos síntomas que indicaban una posible epilepsia leve, por lo que el médico de David lo remitió a un neurólogo, que tomó una resonancia magnética e hizo otros diagnósticos.
Los resultos son sin epilepsia ¡Buenas Noticias!
Pero, ¿ves cómo aún era mejor haber obtenido la referencia que no hacerlo?
En el caso de David, dar el paso de crear un equipo de especialistas de Atención Coordinada para enfocarse en su ansiedad, ERGE y PVFM ha marcado la diferencia para su felicidad, su salud y, por lo tanto, su éxito.
¿Ponemos las decoraciones el pastel antes o después de colocarlo en el horno? Primero horneamos ese pastel, lo dejamos enfriar, y luego lo decoramos. Puede parecer una analogía tonta, pero poniendo las decoraciones primer es lo que hizo mi generación de padres, y algunos padres jóvenes todavía están haciendo. En el caso de David, no fue hasta hace poco que "horneamos" correctamente el PVFM, la ansiedad y la ERGE en "el horno" de un equipo de especialistas de atención coordinada, antes de poner las "decoraciones" en su IPP / ISP.
Como siempre, ¡los documentos controlan todas las decisiones por nuestras familias y nuestros hijos! (IPP/ISP documentos de ellos con Regional Center)
Despues que la familia e el equipo de David comprendieron estas condiciones concurrentes y luego evaluaron cómo interactúan con el autismo de David, pudimos reestructurar los objetivos de IPP / ISP.
Una imagen del "Ciclo vicioso" de David de condiciones concurrentes esta en diagrama #3.
¿Te está problema sucediendo esto a ti o a alguien que conoces?
Diagram #3 --
____________________________________________________________________
Pero, ¿qué hay de evitar que comience el ciclo vicioso en primer lugar?
Aquí está el programa de David:
1. David evita que se forme la "ERGE" en su sistema digestivo de el a través de una dieta y ejercicio cuidadosamente administrados.
2. La ansiedad también contribuye a la ERGE, por lo que con el PVFM, David evita su ansiedad con la ayuda del siguiente equipo de profesionales psicológicos.
(a) Su especialista en autismo / TDAH, el Dr. Stephen Nowicki, trabajó con David en "TCC", una técnica clásica. La ayuda del Dr. Nowicki fue insustituible y muy importante. Para aquellas personas autistas que tienen "solo un poco de ansiedad" que acompaña a su autismo, sin que sea el fenómeno separado del "trastorno de pánico", la instrucción básica de "TCC" es suficiente. Sin embargo, para David, esto no fue suficiente.
(b) Entonces, el maravilloso programa "ACCESS" en el UC MIND Institute de UC Davis "puso la guinda del pastel de ansiedad".
(c) Como seguimiento del programa ACCESS, David tuvo la bendición de pasar un año muy útil recibiendo más asistencia para el manejo de la ansiedad por parte de Garrett Gower, anteriormente del Instituto MIND.
(d) Hoy, David recibe asistencia para el manejo de la ansiedad que está específicamente en preparación para el éxito en el lugar de trabajo del equipo sobresaliente en "Community and Employment Services" del programa "Progressive Employment Concepts".
Algunas personas autistas realmente tienen un poco de ansiedad leve y algunos problemas estomacales, que no necesitan diagnósticos separados y médicos separados. Pero, si estos síntomas son dramáticos, entonces recomiendo solicitar a los médicos de atención primaria que lo remitan a usted oa su ser querido a especialistas que puedan verificar si se requiere un diagnóstico por separado. En un momento, David tenía algunos síntomas que indicaban una posible epilepsia leve, por lo que el médico de David lo remitió a un neurólogo, que tomó una resonancia magnética e hizo otros diagnósticos.
Los resultos son sin epilepsia ¡Buenas Noticias!
Pero, ¿ves cómo aún era mejor haber obtenido la referencia que no hacerlo?
En el caso de David, dar el paso de crear un equipo de especialistas de Atención Coordinada para enfocarse en su ansiedad, ERGE y PVFM ha marcado la diferencia para su felicidad, su salud y, por lo tanto, su éxito.
¿Ponemos las decoraciones el pastel antes o después de colocarlo en el horno? Primero horneamos ese pastel, lo dejamos enfriar, y luego lo decoramos. Puede parecer una analogía tonta, pero poniendo las decoraciones primer es lo que hizo mi generación de padres, y algunos padres jóvenes todavía están haciendo. En el caso de David, no fue hasta hace poco que "horneamos" correctamente el PVFM, la ansiedad y la ERGE en "el horno" de un equipo de especialistas de atención coordinada, antes de poner las "decoraciones" en su IPP / ISP.
Como siempre, ¡los documentos controlan todas las decisiones por nuestras familias y nuestros hijos! (IPP/ISP documentos de ellos con Regional Center)
Despues que la familia e el equipo de David comprendieron estas condiciones concurrentes y luego evaluaron cómo interactúan con el autismo de David, pudimos reestructurar los objetivos de IPP / ISP.
Una imagen del "Ciclo vicioso" de David de condiciones concurrentes esta en diagrama #3.
¿Te está problema sucediendo esto a ti o a alguien que conoces?
Diagram #3 --
(Post #3)
The Autism Spectrum ranges from "Level 1" (requiring some support) through "Level 3" (requiring very substantial support). My son, David M. Nisson, PhD, is at "Level 2" (requiring substantial support). He dreamed of earning college degrees in Experimental Physics, but only wealthy "Twice Exceptional" students could afford this. It's against my religious values to ignore "Talents", so, with my support, David went on to complete a Ph.D. at UC Davis Physics and contribute to the all-important world of scientific research. This blog serves both as a reference for the increasing numbers of parents following in my footsteps, and a warning that in addition to advocating for academic accommodations and arranging behavior programs, parents must also spend time studying medical issues that seem minor during childhood, and to
participate now in the reform efforts of crucial national agencies like SSA and HUD, and those of your city, county and state government to protect your sons' or daughters' futures.
Saturday, August 11, 2018
Complications delaying David's Adult Program/Complicaciones que retrasan el programa para adultos de David
(Post #4)—
Lo siento que no tengo tiempo hoy para traducir a espanol hoy.
_________________________________________________________________
In my post of July 31, I expressed my disappointment at living for weeks on end out of packed boxes, prepared to move overnight at a moment's notice into our promised new apartment that still hasn't materialized.
Funny how disappointment goes, though...sometimes bad things happen for a good reason...
David and I received some interesting news from the manager at the premiere low income housing development of our city, upon whose wait list David has sat since 2017. I thought the wait for one of their high quality two bedroom units would be at least another two-to-three years, but according to the manager, David's name will rise to the top sometime in 2019.
That's great!
However, it leaves us with significant decisions to make regarding our where to live until then.
- To review, our current apartment is not a "great sell" to those we had hoped would replace me as David's roommate, so we were planning to move to a nice, modern home, pleasant enough to attract the pickiest** of potential roommates.We're certain that by late summer 2019, David will find someone who qualifies financially to be happy sharing an apartment with him. As soon as that lease is up, I move out, and the new roommate moves in.
- There's a catch, though. That new apartment in the non-premiere (but better than current housing) situation has a year-long lease. If the premiere apartment comes available before that lease is up, we pay exorbitant costs in lease-break fees.
- Month to month agreements are nearly unheard of in Davis, but our current apartment is on a month to month agreement. If we stay here until the premiere place becomes available, we can move out when we wish without paying fees.
Good lessons for David that, in life, every dream has its cost.
** While it's true that we lost a couple potential roommate because they were too "picky" to live in David's current, less-comfortable apartment (wall heater instead of central heat, etc). Hundreds of UC Davis students would pay truckloads of money for any place to live in our too-small city, but tax credit housing is denied to full time students. Some low-income, non-students wanted to live here, too, despite this apartment's issues, but the FHA has so many restrictions, and they failed to qualify.
(Because "affordable housing" is not allowed in Davis for full time college students, David and I were forced into outrageously expensive market price housing during David's graduate school years. To afford it, I slept in the living room of a one bedroom apartment. Personally, for all its faults, I love our crummy, old apartment because, at fifty-eight years old, I cherish having my own room).
(Post #4)
The Autism Spectrum ranges from "Level 1" (requiring some support) through "Level 3" (requiring very substantial support). My son, David M. Nisson, PhD, is at "Level 2" (requiring substantial support). He dreamed of earning college degrees in Experimental Physics, but only wealthy "Twice Exceptional" students could afford this. It's against my religious values to ignore "Talents", so, with my support, David went on to complete a Ph.D. at UC Davis Physics and contribute to the all-important world of scientific research. This blog serves both as a reference for the increasing numbers of parents following in my footsteps, and a warning that in addition to advocating for academic accommodations and arranging behavior programs, parents must also spend time studying medical issues that seem minor during childhood, and to
participate now in the reform efforts of crucial national agencies like SSA and HUD, and those of your city, county and state government to protect your sons' or daughters' futures.
Tuesday, July 31, 2018
Waxing Philosophical - a Lesson on the Ancient Deity "Dis"/¡Qué filosófico!
(Post #5)—
Lo siento que no tengo tiempo hoy para traducir a espanol hoy.
___________________________________________________
And now to wax spiritual about our latest (political) event--
There we were, happy to finally, finally be moving forward toward the day that I can return to teaching because David will finally, finally, FINALLY have a roommate, so as to begin his Supported Living Services program. (On My Own).
We had even received a letter confirming which apartment would be ours.
Then, it happened.
Disappointment in an email. Through a complication resulting from housing regulations, our apartment was lost. So, here we remain, living in boxed-up Limbo. How disappointing.
Disappointment is impossible to avoid at times, isn't it? Yet Christians like me, and other followers of God, are supposed to turn our disappointments into opportunities to "bend one's will to that of The Lord".
Well, today, it's got me beat. I just can't get over it...
And now to show why it is that we really, really MUST find a way to get me back into my English-teaching classroom:
Let's cheer me up with a vocabulary lesson! Root words-- my favorite!
Ever wonder how spirituality relates to the root words in "disappointment"?
Well, here goes. Let's begin with the word "Dis":
Thanks, Virgil! This helps me forgive myself for having inadvertently wandered through Disappointment's Door, losing my normal optimistic composure. And, Virgil's poem helps me see how that ancient deity lives on in modern English. Today, the word dis is synonymous with not.
Some examples are:
So, when we discourage people instead of encouraging them; when we dislike them instead of trying to see something likeable; when we allow disappointment to distract us from counting our blessings, we are, in a sense, accidentally worshiping the God of Negativity.
Next, let's look at the other part of the word disappoint which is, of course, appoint.
No, not in the appointed office, governmental appointment sort of meaning, although English speakers have used it that way for hundreds of years.
In the word "disappoint", we mean appoint in the sense of setting an appointment- in David's and my case an appointment for 5:00 pm, July 16th, 2018 to sign a lease. Not simply for a new apartment, but for a new lease on life!
(To understand why it's more than just an apartment, please read my post of July 27 entitled"Will you need to cash out your retirement to help your adult son or daughter?").
Today's disappointment stings, but I also know that, as Teresa of Avila wrote, "All things pass".
Across a vista of nearly six decades, I look back on the journey of my life, at previous disappointments that worked themselves out in the long run, and I witness that the power of "Dis" was just an illusion. The God who is healing this world and all in it, the God of love- of tikkun olam- allows the breaking of appointments and other suffering for a good reason. Somehow, there's a better apartment than the one for which we got all packed up. Or, perhaps not. Perhaps the good God has other plans I can't see now because I'm merely human:
"Patience achieves everything." - Teresa of Avila
(Post #5)
Then, it happened.
Disappointment in an email. Through a complication resulting from housing regulations, our apartment was lost. So, here we remain, living in boxed-up Limbo. How disappointing.
Disappointment is impossible to avoid at times, isn't it? Yet Christians like me, and other followers of God, are supposed to turn our disappointments into opportunities to "bend one's will to that of The Lord".
Well, today, it's got me beat. I just can't get over it...
And now to show why it is that we really, really MUST find a way to get me back into my English-teaching classroom:
Let's cheer me up with a vocabulary lesson! Root words-- my favorite!
Ever wonder how spirituality relates to the root words in "disappointment"?
Well, here goes. Let's begin with the word "Dis":
- "Dis" is the ancient Roman name for that creature whom the Greeks called "Hades", the king of hell- the God of Negativity and Pessimism. In The Aeneid, Virgil wrote:
Thanks, Virgil! This helps me forgive myself for having inadvertently wandered through Disappointment's Door, losing my normal optimistic composure. And, Virgil's poem helps me see how that ancient deity lives on in modern English. Today, the word dis is synonymous with not.
Some examples are:
- like/ dislike
- encourage/ discourage
- ease/ disease
So, when we discourage people instead of encouraging them; when we dislike them instead of trying to see something likeable; when we allow disappointment to distract us from counting our blessings, we are, in a sense, accidentally worshiping the God of Negativity.
Next, let's look at the other part of the word disappoint which is, of course, appoint.
No, not in the appointed office, governmental appointment sort of meaning, although English speakers have used it that way for hundreds of years.
In the word "disappoint", we mean appoint in the sense of setting an appointment- in David's and my case an appointment for 5:00 pm, July 16th, 2018 to sign a lease. Not simply for a new apartment, but for a new lease on life!
(To understand why it's more than just an apartment, please read my post of July 27 entitled"Will you need to cash out your retirement to help your adult son or daughter?").
Today's disappointment stings, but I also know that, as Teresa of Avila wrote, "All things pass".
Across a vista of nearly six decades, I look back on the journey of my life, at previous disappointments that worked themselves out in the long run, and I witness that the power of "Dis" was just an illusion. The God who is healing this world and all in it, the God of love- of tikkun olam- allows the breaking of appointments and other suffering for a good reason. Somehow, there's a better apartment than the one for which we got all packed up. Or, perhaps not. Perhaps the good God has other plans I can't see now because I'm merely human:
- Does the Holy Spirit want me to quit feeling sorry for myself as the reason for this housing delay is that I have too much money in retirement set aside for David's Special Needs Trust? How many parents my age were unable to save anything at all for their disabled offspring?
- Or, is God using this "tribulation" to improve my plot for the book I'm writing? (one needs conflict to write a good story);
- Is God providing David and me an opportunity to pay our dues and earn our stripes, as we struggle alongside others fighting this final American Revolution? (... the Disability Revolution!!)
- This event is helping me to feel greater compassion for the too-many families running from nearby wildfires. After all, our stuff is in boxes; their stuff is burned.
(Post #5)
The Autism Spectrum ranges from "Level 1" (requiring some support) through "Level 3" (requiring very substantial support). My son, David M. Nisson, PhD, is at "Level 2" (requiring substantial support). He dreamed of earning college degrees in Experimental Physics, but only wealthy "Twice Exceptional" students could afford this. It's against my religious values to ignore "Talents", so, with my support, David went on to complete a Ph.D. at UC Davis Physics and contribute to the all-important world of scientific research. This blog serves both as a reference for the increasing numbers of parents following in my footsteps, and a warning that in addition to advocating for academic accommodations and arranging behavior programs, parents must also spend time studying medical issues that seem minor during childhood, and to
participate now in the reform efforts of crucial national agencies like SSA and HUD, and those of your city, county and state government to protect your sons' or daughters' futures.
Friday, July 27, 2018
¿Tendrá que retirar su retiro para ayudar a su hijo o hija adulto?/ Will You Need to Cash Out Your Retirement to Help Your Adult Son or Daughter?
Post #6
Lo siento que no tengo tiempo hoy para traducir a espanol hoy.
___________________________________________________________________
If you can understand the issues in the following post, then you pass the test of knowledge regarding post-college housing acrobatics.
If not, I recommend getting started on learning about these issues ASAP:
One of the compliance officers of the affordable housing agency where my autistic son and I now share an apartment was trying to find us a newer apartment with central heat and air***** that can financially accommodate David's and my "outside the box" financial household. (Bear in mind, we may seem "outside the box" because we are pioneers. However, you, dear Reader, should pay attention, because my I am only the first drop in a tidal wave of people like you with autistic sons and daughters):
- * Just because an autistic adult has college degrees is no guarantee of a job after college. Like many, many, MANY autistic adults, currently, David has only $910.72 in SSI monthly benefit to pay toward rent (very low income) and no assets.
- * In contrast, my income is approximately $1940/mo, and my assets create problems for housing qualification. Here's that problem: I took time off from teaching to help my autistic son earn college degrees, and have been living with him until he gets set up in his all-important SLS program. Rather than cashing out my PERS, STRS, and the small inheritance I received from my mother, I placed it into the "Mary Nisson Living Trust", which will convert to David's Special Needs Trust upon my death. A Special Needs Trust allows an SSI recipient to inherit funding without ruining his or her SSI or Medi-Cal. However, under current housing laws, Special Needs Trusts do not help housing.
After much calculating and researching, the compliance officer notified David and me that were were approved for an apartment with central heat and air. (See below for reason central heat/air is crucial). *****.
Then, after double-checking the compliance officer's work, her boss, the Compliance Manager noticed an error. She explained to David and me that the compliance officer had accidentally thought the apartment she was considering for David and me is a "TCAC" program apartment, for which our finances would have qualified despite my high asset amount.
Then, after double-checking the compliance officer's work, her boss, the Compliance Manager noticed an error. She explained to David and me that the compliance officer had accidentally thought the apartment she was considering for David and me is a "TCAC" program apartment, for which our finances would have qualified despite my high asset amount.
However, the Manager discovered that the apartment we had been offered is actually a RHCP apartment. So, David and I could not sign that lease, after all.
Why had no one in the IDD world, or the Land of Affordable Housing directed me to "TCAC" earlier? David and I would have been applying for those other housing situations had we known that they were the type of housing for which our "goofy" finances qualify. They were not on the Yolo County Housing Authority lists, nor on other agency's lists, but I now have them. Here's that link:
TCACmap
(Scroll down to the "list of projects" link to see all projects).
The wait list on their current projects is years, but David's completing those app's anyway. As always, please continue to search for someone to replace me as David's roommate. (Davis, California).
Thanks,
~ Mary
***** Please remember that the purpose of moving to an apartment with central heat and air, rather than having someone replace me as David's roommate in our current "home", is not that David and/or I dislike our wall heater. The reason is that David will be living with non-family, and there's no privacy here because the heating here is provided by a hallway unit, so the residents must sleep with doors open throughout winter.
For the sake of starting up the SLS, David would be fine sleeping with his door open, as long as his roommate has no criminal background and is psychologically under control.
How about you, or your autistic son? (Best not to have a woman living here, as there's no nighttime privacy).
Want to be David's roommate?
End Post #6
The Autism Spectrum ranges from "Level 1" (requiring some support) through "Level 3" (requiring very substantial support). My son, David M. Nisson, PhD, is at "Level 2" (requiring substantial support). He dreamed of earning college degrees in Experimental Physics, but only wealthy "Twice Exceptional" students could afford this. It's against my religious values to ignore "Talents", so, with my support, David went on to complete a Ph.D. at UC Davis Physics and contribute to the all-important world of scientific research. This blog serves both as a reference for the increasing numbers of parents following in my footsteps, and a warning that in addition to advocating for academic accommodations and arranging behavior programs, parents must also spend time studying medical issues that seem minor during childhood, and to
participate now in the reform efforts of crucial national agencies like SSA and HUD, and those of your city, county and state government to protect your sons' or daughters' futures.
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