Thursday, April 26, 2012

Defining and Measuring Psychiatric Disorders

The Health Communication, Health Literacy, & Social Science (#hchlitss) tweet chat welcomes Dr. Jason Schnittker (@JSSchnitt) as our guest on Thursday, April 26th at 8 p.m. ET / 5 p.m. PT.  Dr. Schnittker will focus on how and why psychiatric disorder are measured and defined.

Jason Schnittker is a sociology professor at the University of Pennsylvania.  His research interests are in medical sociology and social psychology, focusing on mental health, physical health, and the relationship between the two.  His current research is concerned with the effects of incarceration on the health of individuals, families, and communities, funded in part by a Robert Wood Johnson Foundation Investigator Award in Health Policy, described here (in collaboration with Chris Uggen of the University of Minnesota).  He is also interested in gene-environment relationships as they relate to health and well-being.  He has a long-standing interest in public beliefs about mental health and illness, especially regarding how the public thinks about the causes of mental illness.

For a current version of his vita, look here.

Wednesday, April 18, 2012

Medical words in media: doesn't = understanding

The Health Communication, Health Literacy, & Social Science (#hchlitss) tweet chat welcomes Kathy Kastner as our guest on Thursday, April 19th at 8 p.m. ET / 5 p.m. PT.  The tweet chat will focus on the use of medical jargon in the media and potential confusion jargon can cause.

So who is Kathy Kastner?  A little about Kathy in her own words:


Kathy Kastner: the back story

In my career as tv reporter/producer, I spent a lotta years producing ‘disease of the week’ stories. Topics were always intriguing: the cranio-facial surgeon who dedicated himself to ‘normalizing’ the faces of high intellect Down’s Syndrome kids; 21st Century Diseases: diseases of malnutrition replaced by diseases of over consumption, alternative diagnostic techniques, like analyzing hair., and Vaginal Birth after a Cesarean Section.

Format was a given, and will be familiar: something grabby to start – ambulance wailing, mother crying, young/old man/woman overcoming.  Healthcare professionals in an equally formulaic presentation: in examining room, talking with families, doing blood pressure/ stethoscope. The ubiquitous walking shot.

Almost always those healthcare professionals felt their worth was in their words, the more complicated the better. That showed “how much they knew”.  Jargon – spoken authoritatively – made me feel I should know. 

And that’s thing about media. Words like hypertension, narcotics, benign, code, full code are used with such regularity that it’s assumed viewers/readers know what they mean.

It was only when my life and career took a sharp turn that I saw things differently.
I got pregnant.  No longer could I slough off words like episiotomy and epidural.
When I asked, turned out I was asking for all the couples in the pre-natal class. After one of the classes, the instructor approached me saying ‘you’re in production. Could you direct me to someone to produce education that helps these expectant parents think past labour and delivery to the baby they’re going to take care of.” 

Thot about it for a minute.. Turned to my husband, who worked at MuchMusic – Canada’s MTV, and we decided we’d have a go, approaching it as ‘real people’.  And so was born The Parent Channel and Healthtv, two hospital-based tv networks designed not to scare you into watching, but soothe you into learning. Those grabby hooks: off-putting. Jargon: defeating. Walking shots: useless.

A whole different sensibility is required for health education. It is essential to ensure, from the get-go that words do not get in the way. An unfamiliar word brings listening to a halt, as the brain tries to do two different things: making sense of the word and making sense of what else is being said.

I’m collecting words, now. Simple ones, that’d fit the 6-8 grade requirements but still baffle.
For me, part of the e-evolution and revolution is having the guts and confidence to say – whatever your version - “You’ve lost me. I don’t know what that means.’

I’m glad I’m not producing disease of the week anymore. So much more fulfilling to determine real people's needs, and then try to fill ‘em. 

 Participants are also encouraged to read Kathy's blog posting: "Medical jargon: even single-syllable words can confound"

Monday, April 16, 2012

Parenting Children with Autism and Special Needs: Advocacy and Support with Katrina Moody

Here is the transcript for our April 12th tweetchat with Katrina Moody.
#hchlitss transcript
Healthcare Social Media Transcript

From:
Thu Apr 12 17:00:00 PDT 2012
To:
Thu Apr 12 18:15:00 PDT 2012
               
kdhoffman2         Welcome back to #hchlitss with our guest @KatrinaMoody #hchlitss

KatrinaMoody    @kdhoffman2 LOL - fun party! #hchlitss

rv_rikard             Now that March Madness is over...the #hchlitss is back and ready to ROCK! #hchlitss

KatrinaMoody    @kdhoffman2 Happy to be here! Hey everyone! #hchlitss

kdhoffman2         Welcome all to our #hchlitss lurkers, participants, friends! #hchlitss

rv_rikard             Welcome to all..please take a moment to introduce yourself! :) #hchlitss

KatrinaMoody    RT @kdhoffman2: Welcome all to our #hchlitss lurkers, participants, friends! #hchlitss

rv_rikard             @KatrinaMoody <-- Thank you for being our guest tonight! #hchlitss

nursefriendly      Andrew Lopez, RN from New Jersey :) #nurseup RT @rv_rikard: Welcome to all..please take a moment to introduce yourself! :) #hchlitss

yayayarndiva     RT @kdhoffman2@KatrinaMoody did a terrific post on her website http://t.co/DGiGZead to get us set 4 #hchlitss tweetchat in 10 mins.8pm ...

rv_rikard             RT @kdhoffman2: Welcome all to our #hchlitss lurkers, participants, friends! <-- wall flowers, trouble makers, partners in crime.. #hchlitss

yayayarndiva     RT @rv_rikard: We r BACK in 15 mins #hchlitss in 30 minutes with guest @KatrinaMoody on parenting, special needs, advocacy & lots more.. ...

KatrinaMoody    @rv_rikard Happy to be here! Who all's joining us? #hchlitss

schwartzbrown   Hi, Mindy here, social worker from NJ. Lost my brackets with UNC. #hchlitss

yayayarndiva     RT @rv_rikard@kdhoffman2 -- evening Kathleen :) #hchlitss

kdhoffman2         I am Kathleen Hoffman, health communication and literacy is my area of expertise & I host with fellow troublemaker @RV_Rikard #hchlitss

nursefriendly      :) Need to try this via Google Hangouts one day :) RT @KatrinaMoody@nursefriendly If only we could share through the screen! #hchlitss

yayayarndiva     @rv_rikard @kdhoffman2 Waving hello from.the left coast #hchlitss

KatrinaMoody    @rv_rikard Oh, & I'm Kat to my friends, wife, mom to 3 amazing guys with special needs, writer, advocate & blogger at @Kats_Cafe #hchlitss

KatrinaMoody    @nursefriendly I LOVE Google+ Hangouts! They're a blast! #hchlitss

rv_rikard             R.V. Rikard #Sociology Doctoral Candidate @ #NCState - my research focus is #healthlit and #health #disparities (#sdoh#hchlitss

kdhoffman2         Welcome @yayayarndiva @schwartzbrown @nursefriendly Waving backatcha #hchlitss

rv_rikard             @yayayarndiva <-- WOOT! Waving back from the east coast! #hchlitss


rv_rikard             RT @KatrinaMoody@nursefriendly I LOVE Google+ Hangouts! Theyre a blast! <-- AGREE!!! #hchlitss

mamasonbedrest                Good evening everyone!! #hchlitss

rv_rikard             @schwartzbrown @nursefriendly - Welcome!! #hchlitss

kdhoffman2         Welcome @mamasonbedrest #hchlitss

rv_rikard             @mamasonbedrest <-- Welcome to the chat! Great to see you! #hchlitss


nursefriendly      I'm seeing some familiar faces :) #nurseup #s4pm #hcsm RT @KatrinaMoody@nursefriendly I LOVE Google+ Hangouts! They're a blast! #hchlitss

rv_rikard             RT @KatrinaMoody: Oh, & Im Kat to my friends, wife, mom to 3 amazing guys with special needs, writer, adv & blogger at @Kats_Cafe #hchlitss

yayayarndiva     I am Mimi Poinsett mama pediatrician, Amazon Advocate #KnitAHoodie maker for #TrayvonMartin #hchlitss http://t.co/JuJ2tZFG

kdhoffman2         I want our guest 2 have as much time as possible so I'm going 2 get us started fairly soon.all lurkers & troublemakers intro self #hchlitss

nursefriendly      RT @yayayarndiva: I am Mimi Poinsett mama pediatrician, Amazon Advocate #KnitAHoodie maker for #TrayvonMartin #hchlitss http://t.co/JuJ2tZFG

yayayarndiva     RT @kdhoffman2: We're about to start #hchlitss tweetchat after a few weeks hiatus <==did I spell that right? #hchlitss

yayayarndiva     RT @rv_rikard: Now that March Madness is over...the #hchlitss is back and ready to ROCK! #hchlitss

kdhoffman2         Let's get this chat going: Q1: @KatrinaMoody To you what is autism awareness? #hchlitss

kaycey55              RT @yayayarndiva: I am Mimi Poinsett mama pediatrician, Amazon Advocate #KnitAHoodie maker for #TrayvonMartin #hchlitss http://t.co/JuJ2tZFG

rv_rikard             RT @kdhoffman2 Im going 2 get us started soon.all lurkers & troublemakers intro self <-- WOOT! #hchlitss

rv_rikard             RT @kdhoffman2: Lets get this chat going: Q1: @KatrinaMoody To you what is autism awareness? #hchlitss

KatrinaMoody    @kdhoffman2 Autism Awareness is about promoting understanding and respect for those w autism and families living w/ the dx #hchlitss

nursefriendly      #autism #autistic #specialneeds RT @kdhoffman2: Let's get this chat going: Q1: @KatrinaMoody To you what is autism awareness? #hchlitss

kdhoffman2         Welcome @kaycey55 to #hchlitss #hchlitss

KatrinaMoody    @kdhoffman2 And the hard answer ... autism awareness is also about understanding how to advocate for ourselves and our families #hchlitss

lewismal               Saw this happening. Declaring myself a lurker thrying to see what going here. Looks interesting. #hchlitss


rv_rikard             @kaycey55 <-- Greetings!! :) #hchlitss

kdhoffman2         RT @KatrinaMoody@kdhoffman2 Autism Awareness is promoting understanding & respect 4 those w autism &families living w/ the dx #hchlitss

KatrinaMoody    @lewismal Welcome! #hchlitss

kdhoffman2         Welcome @lewismal...hoping you do find it interesting #hchlitss

rv_rikard             @lewismal <-- All lurkers are welcome :) #hchlitss

rv_rikard             RT @KatrinaMoody: And the hard answer -autism awareness is also about understanding how to advocate for ourselves and our families #hchlitss

lewismal               Hi I'm Malcolm a health promotion officer from Australia, working on healthy child development. Father of a 4yr old with ASD #hchlitss

KatrinaMoody    How do others see autism awareness? How do they define it for themselves and/or someone they love? #hchlitss

KatrinaMoody    RT @rv_rikard@lewismal <-- All lurkers are welcome :) #hchlitss

kdhoffman2         RT @KatrinaMoody@kdhoffman2 & the hard answer .autism awareness is also abt understanding how 2 advocate 4 ourselves & families #hchlitss

kdhoffman2         RT @lewismal: Hi Im Malcolm hlth promotion officer from Australia, working on healthy child development. Father of a 4yr old w ASD #hchlitss

TheHelpGroup   RT @KatrinaMoody: How do others see autism awareness? How do they define it for themselves and/or someone they love? #hchlitss

nursefriendly      #health #autism RT @KatrinaMoody How do others see autism awareness?How do they define it for themselves and/or someone they love? #hchlitss

lewismal               Autism awareness = a type of mental health literacy see http://t.co/YFMnFzl5 Cool definition #hchlitss

rv_rikard             @KatrinaMoody: How do others c autism awrnss? How do they def 4 themslvs and/or smene they love? <- Are these ques hard to answer? #hchlitss

kdhoffman2         @KatrinaMoody I liked the way you described autism in your family...please share #hchlitss

KatrinaMoody    Love! RT @lewismal: Autism awareness = a type of mental health literacy see http://t.co/pebbijHk Cool definition #hchlitss

lewismal               =knowledge and beliefs about mental disorders which aid their recognition, management or prevention. #hchlitss

rv_rikard             @TheHelpGroup <-- Greetings! Welcome to the chat! #hchlitss

kdhoffman2         Welcome @TheHelpGroup #hchlitss


KatrinaMoody    Though I would also term it as a type of neurological and developmental awareness #hchlitss


kdhoffman2         @KatrinaMoody please share your definition of autism awareness as you described it in your family #hchlitss

TheHelpGroup   @lewismal That is an excellent definition #hchlitss

KatrinaMoody    @kdhoffman2 Autism is part of the whole - every person is a piece of the puzzle that makes up our family, autism & all #hchlitss

NeonKnight44     RT @KatrinaMoody: Love! RT @lewismal: Autism awareness = a type of mental health literacy see http://t.co/pebbijHk Cool definition #hchlitss

lewismal               ability to recognize Autism; knowing how to seek good information; good help, how A develops overtime, value of Early Intervention #hchlitss

yayayarndiva     RT @kdhoffman2: Let's get this chat going: Q1: @KatrinaMoody To you what is autism awareness? #hchlitss

katherinekleon    Hi, Katherine Leon, in lurking mode tonight but grateful to learn more re: autism awareness #hchlitss

rv_rikard             @NeonKnight44 <-- Welcome to the chat! #hchlitss

KathyKastner     +1 RT @katherinekleon: Hi, Katherine Leon, in lurking mode tonight but grateful to learn more re: autism awareness #hchlitss

KatrinaMoody    @kdhoffman2 In our family Autism really is just a piece of the puzzle, and making those pieces fit is true advocacy/understanding #hchlitss


lewismal               Knowing how to put a person with ASD at ease so you can enjoy the interaction to mutual benefit. #hchlitss

rv_rikard             @katherinekleon <-- Good evening Katherine! :) #hchlitss


TheHelpGroup   @kdhoffman2 @rv_rikard I am probably just listening because I might get pulled away, but glad to find you! Great topic #hchlitss

rv_rikard             @KathyKastner <-- Good evening Kathy - good to see you! #hchlitss

rv_rikard             Q2: @KatrinaMoody What tools to you know for parents in advocating for their autistic child's health? #hchlitss

KatrinaMoody    We have three boys on the spectrum and hubby is an Aspie, so the varying facets of Autism are an important part of understanding #hchlitss

KathyKastner     @rv_rikard And you too,. Glad you''re back on air #hchlitss

rv_rikard             @TheHelpGroup <-- just in case you are pulled away -- thank you for being with us! #hchlitss

lewismal               Autism awareness could include knowing that extended breastfeeding might be protective, produce life better outcomes for ASD kids #hchlitss

yayayarndiva     @KatrinaMoody @kdhoffman2 Autism Awareness also Autistics Self Advocacy #hchlitss

kdhoffman2         RT @KatrinaMoody: Have three boys on the spectrum &hubby is an Aspie,varying facets of Autism R an important part of understanding #hchlitss

katherinekleon    RT @KatrinaMoody @kdhoffman2 Autism Awareness is about promoting understanding & respect for those w/autism & families living w/dx #hchlitss

rv_rikard             RT @KathyKastner: And you too,. Glad youre back on air <-- @kdhoffman2 and I are *very* happy to be back!!! :D #hchlitss

KatrinaMoody    @rv_rikard Tools for advocacy, for your own child w/autism, include a generalized understanding of the disorder and role in ... #hchlitss

rv_rikard             @KatrinaMoody -- what is Aspie? #hchlitss

lewismal               Autism Awarenss: Knowing how to navigate the system. How to advocate, how to present your concerns observations. #hchlitss

nursefriendly      RT @lewismal: Knowing how to put a person with ASD at ease so you can enjoy the interaction to mutual benefit. #hchlitss

nursefriendly      RT @rv_rikard: Q2: @KatrinaMoody What tools to you know for parents in advocating for their autistic child's health? #hchlitss

kaycey55              RT @yayayarndiva#KnitAHoodie in honor of #TrayvonMartin #duduza sized #PeaceBeActive #hchlitss http://t.co/IyVFQIM9

KatrinaMoody    Understanding autism from a parent's POV is different than understanding it from an Aspie (someone w/Aspergers) POV #hchlitss

KatrinaMoody    @lewismal Very good way to put this ... it's also having the cahunas to stand up for what you believe is right for your child #hchlitss

lewismal               How to get services & professional to work together to produce better outcomes for kids with Autism #hchlitss

nursefriendly      RT @yayayarndiva@KatrinaMoody @kdhoffman2 Autism Awareness also Autistics Self Advocacy #hchlitss

kdhoffman2         RT @KatrinaMoody: Understanding autism frm a parents POV is different than understanding it frm an Aspie (someone w/Aspergers) POV #hchlitss

nursefriendly      RT @lewismal: Autism Awarenss: Knowing how to navigate the system. How to advocate, how to present your concerns observations. #hchlitss

KatrinaMoody    More tools for advocating 4 your child w/autism - Understanding the IEP and educational , the medical and specialists, work 2gther #hchlitss

katherinekleon    RT @lewismal: Autism Awarenss: Knowing how to navigate the system. How to advocate, how to present your concerns observations. #hchlitss

lewismal               T2 A good general education seems help particularly for mothers. #hchlitss

KatrinaMoody    @lewismal This is a hard one, but communication is key, as is making sure that YOU are the first expert when it comes to them all #hchlitss

KatrinaMoody    Biggest tool for advocacy - knowing when to get help! Sometimes you need some1 who understands things better, it's okay to ask! #hchlitss

yayayarndiva     Autism Awareness comes in many colors @bluehijabday @thereal_msbrooks @lynnesoraya do it daily on twitter #hchlitss

kdhoffman2         RT @KatrinaMoody: More tools 4advocating 4 your child w/autism - Understnding IEP &educational, medical &specialists, work 2gther #hchlitss

lewismal               T2 A good family income or public $$ or practical supports allow family to use what supports might be there . #hchlitss

KatrinaMoody    @yayayarndiva absolutely - practicing autism awareness beats talking about it any day! #hchlitss

rv_rikard             MT @KatrinaMoody: Biggst tool 4 advocacy - knwing whn 2 get help! Smtims u need sme1 who undrstnds thngs better, its okay to ask! #hchlitss

rv_rikard             RT @yayayarndiva: Autism Awareness comes in many colors @bluehijabday @thereal_msbrooks @lynnesoraya do it daily on twitter #hchlitss

KatrinaMoody    @lewismal I think part of that is understanding the supports in place U can tap into, like community resources, early intervention #hchlitss

yayayarndiva     Autism Awareness comes evidenced based @thinkingautism @shannonrosa @lizditz @stevesilberman @ejwillingham #hchlitss

lewismal               @katrinamoody Yes need to stand up. Advocate effectively Assertive but without getting aggressive or narky. #hchlitss

rv_rikard             RT @yayayarndiva: Autism Awareness comes evidenced based @thinkingautism @shannonrosa @lizditz @stevesilberman @ejwillingham #hchlitss

yayayarndiva     Autism Awareness comes understanding #sdoh #healthdisparities #hchlitss

kdhoffman2         Q3: Can you describe the reality of advocating for kids with special needs when talking with specialists and doctors? #hchlitss

KatrinaMoody    @yayayarndiva Hopefully everyone has folks they look up to in continuing instruction on Autism #hchlitss

rv_rikard             RT @yayayarndiva: Autism Awareness comes understanding #sdoh #healthdisparities <-- ABSOLUTELY! #hchlitss

nursefriendly      RT @yayayarndiva: Autism Awareness comes in many colors @bluehijabday @thereal_msbrooks @lynnesoraya do it daily on twitter #hchlitss

nursefriendly      RT @yayayarndiva: Autism Awareness comes evidenced based @thinkingautism @shannonrosa @lizditz @stevesilberman @ejwillingham #hchlitss

lewismal               @thehelpgroup Mental Health Literacy definition has driven a lot of Austrian policy & program development #hchlitss

KatrinaMoody    @kdhoffman2 The reality...The rest of the world goes on, while U R caregiver, therapist, nurse, teacher, & parent #hchlitss

KatrinaMoody    @kdhoffman2 I work from home after years of trying and failing to hold down a full-time job, even a part-time job. I'm mom first. #hchlitss

yayayarndiva     At times assertiveness is misconstrued for snarkiness, aggressiveness #hchlitss

AlisynGayle         RT @rv_rikard: RT @kdhoffman2: Welcome all to our #hchlitss lurkers, participants, friends! <-- wall flowers, trouble makers, partner ...

KatrinaMoody    @kdhoffman2 You have to see yourself as your child's best and brightest expert, always #hchlitss

lewismal               Q3 Both myself & wife have much experience so we navigate the system with relative ease. #hchlitss


yayayarndiva     Autism Awareness comes w awareness that children with special needs might or might not have autism- many conditions #hchlitss

KathyKastner     @KatrinaMoody Might I ask: where do you get your support.. andfrom what sources your knowledge #hchlitss

lewismal               Q3 Many other including health professionals are frustrated for years tryoing to get #hchlitss

rv_rikard             @AlisynGayle <-- Welcome! :) #hchlitss

lewismal               Opps last tweet cut short #hchlitss

rv_rikard             RT @KathyKastner@KatrinaMoody Might I ask: where do you get your support.. andfrom what sources your knowledge #hchlitss

schwartzbrown   In US, if autism were seen as purely a mental health diagnosis, kids would be in big trouble in terms of services #hchlitss

kdhoffman2         @lexismal @KatrinaMoody I believe it is incredibly hard to not be "aggressive" Assertiveness is definitely mistaken 4 aggression #hchlitss

KatrinaMoody    @KathyKastner 3 on the spectrum, plus my hubby, & I'm a local advocate & parent mentor, plus publish on my site as well #hchlitss

lewismal               Q3 Many others including health professionals are frustrated trying to get a diagnosis & early intervention services. Takes years. #hchlitss

KatrinaMoody    YES! RT @schwartzbrown: If autism were seen as purely a mental health diagnosis, kids wld be in big trouble in terms of services #hchlitss

KatrinaMoody    @kdhoffman2 You sometimes try so hard not to be seen as aggressive that you forget TO be assertive, though #hchlitss

KatrinaMoody    @lewismal Absolutely - the standards have been updated, but not the resources for diagnosis #hchlitss

katherinekleon    our elementary inclusive. Kids accept, no questions. Brave parents assert to educate teachers/parents in areas school system fails #hchlitss

yayayarndiva     Autism Awareness means we share the tent with others with special needs,abilities, identification, are not entangled by language #hchlitss

lewismal               Q3 The system is Broken. We expect struggling families often with low resources to navigate a system even profs can't navigate. #hchlitss

KatrinaMoody    @katherinekleon this is great - a collaborative effort works well for parents and kids! #hchlitss

lewismal               I'm not lurking much. Hope you like my inputs. #hchlitss

KatrinaMoody    True! RT @lewismal: The system is Broken. We expect struggling families often w low resources 2 navigate a system even profs cant #hchlitss

kdhoffman2         MT @yayayarndiva: Autism Awareness & sharing tent<=@KatrinaMoody's children have rare disease as well...caused blindness #hchlitss

lizditz    #hchlitss See @shannonrosa on awareness vs advocacy, understanding & support http://t.co/pLDoWoIT (re #autism but app. to other cond.)

yayayarndiva     Autism Awareness means some lives all across the spectrum, some defy diagnosis others don't get services unless squeaky wheel #hchlitss

KathyKastner     @KatrinaMoody And with all that to take care of, you have time for a hugely informative rtweetcha :) #hchlitss

KatrinaMoody    .@yayayarndiva By language do you mean label? Or stereotype?? #hchlitss

rv_rikard             @lizditz <-- Welcome to the chat! :) #hchlitss

KatrinaMoody    @KathyKastner I try. Kids are in bed and it's quiet, that's when mommy plays! #hchlitss

KymGrosso         RT @lizditz#hchlitss See @shannonrosa on awareness vs advocacy, understanding & support http://t.co/pLDoWoIT (re #autism but app. to ...

KatrinaMoody    Good point: RT @yayayarndiva: Some lives across the spectrum, some defy diagnosis others dont get services unless squeaky wheel #hchlitss

yayayarndiva     I have a 15 son w bipolar disorder/auditory processing disorder- on spectrum depending upon which specialist, school is talking:) #hchlitss

KatrinaMoody    Good share! RT @lizditz#hchlitss See @shannonrosa on awareness vs advocacy, understanding & support http://t.co/TEMTvaB1 #hchlitss

KathyKastner     Is there any education for parents avail or are parents educating their 'team' #hchlitss

KatrinaMoody    @yayayarndiva Ah, yes - we've been there, I see that! #hchlitss

rv_rikard             @KymGrosso <-- Welcome!! #hchlitss

yayayarndiva     @KatrinaMoody Language- label, stereotype, self identification, group identification- very heterogenous, often in contrast #hchlitss

lewismal               I think it would be helpful how teach families how to navigate they system and how to get it help u solve problems that matter. #hchlitss

KatrinaMoody    @KathyKastner Good question ... there are many resources for parent learning, some Fed and some State #hchlitss

kdhoffman2         @KatrinaMoody it is incredibly hard to live with the way you are treated when your child is "different" #hchlitss

yayayarndiva     My son has been teetering off and on the spectrum- dueling diagnosticians, dueling school, mental health, social service programs #hchlitss

katherinekleon    MT @yayayarndiva: Autism Aware means some lives all across spectrum, some defy diagnosis, others, no services unless squeaky wheel #hchlitss

KatrinaMoody    @yayayarndiva very true ... at the end of the day, it is the one dx'd who matters, none of the labels, language used, etc. #hchlitss

yayayarndiva     I am a Pediatrician, Patient Navigator and family kwon do Amazon Advocate #hchlitss

lewismal               This website is one of the Aust Govs major awareness/family education investments Autism/ASD http://t.co/MZW32zbE Good resources #hchlitss

KatrinaMoody    .@kdhoffman2 It is isolating, at least for many parents, esp. w/3 kids w/ special needs - not easy to find others who understand #hchlitss

yayayarndiva     navigation= between mental health, school districts, medical health, social programs and more -Been There Done That and more #hchlitss

rv_rikard             RT @lewismal: This website is 1 of the Aust Govs major awareness/family educ investments Autism/ASD http://t.co/I1YZgG2I Good res #hchlitss

KathyKastner     @KatrinaMoody Glad 2 hear abt resources. And what abt any online support? forums, FB #hchlitss

KatrinaMoody    @yayayarndiva We dealt with that earlier on with all of our boys, still a bit with our youngest now. It's frustrating #hchlitss

katherinekleon    @KatrinaMoody - at all grade levels, push to have kid-led meetings to address ideas and questions. They always know best! #hchlitss

yayayarndiva     Autism Awareness is community engagement- interface with first responders, juvenile justice, faith communities #PeaceBeActive #hchlitss

rv_rikard             RT @KathyKastner@KatrinaMoody Glad 2 hear abt resources. And what abt any online support? forums, FB <-- GOOD QUESTION! #hchlitss

lewismal               Parent denial of problems is a key issue. Years can be lost by "He will grow out of it" attitude #hchlitss

kdhoffman2         RT @yayayarndiva: navigation= 'tween mental health, school districts, med hlth, soc. programs & more -Been There Done That & more #hchlitss

KatrinaMoody    @KathyKastner I created my site as a safe spot for parents to be 'real' about living w a special needs family ... but other resrcs #hchlitss

yayayarndiva     @KathyKastner of course @thinkingautism @thecoffeeklatch Thinking Person's Guide to Autism #hchlitss

KatrinaMoody    @KathyKastner I connect with lots of others on Twitter, Facebook, and Google+, always open to new connections #hchlitss

KatrinaMoody    @yayayarndiva Great resource there! #hchlitss

kdhoffman2         @KatrinaMoody Q4: What do special needs parents need most? #hchlitss

lewismal               Better education of child health nurse, playgroup leaders, Early education staff could help with early recognition & helpseeking #hchlitss

KatrinaMoody    @lewismal the denial stage is a hard one to experience, deal with, and move past, and some parents live 4 yrs at that stage #hchlitss

yayayarndiva     Autism Awareness means walking w my 15 yo son through juvenile justice system, residential schools, AWOL, sheriffs, police #hchlitss

KatrinaMoody    @kdhoffman2 Special Needs Parents need empathy, understanding, and sometimes a good kick in the pants *grin* - we just need others #hchlitss

rv_rikard             @kdhoffman2 <-- Whoops, sorry I did not shoot off Q4 -- I'm really learning a great deal tonight!! WOW!!! #hchlitss

KatrinaMoody    Special needs parents need others to BE THERE through the ups and the downs. #hchlitss

KatrinaMoody    RT @yayayarndiva: Autism Awareness mns walking w my 15 yo son thrgh juvenile justice system, residential schools, AWOL, sheriffs.. #hchlitss

yayayarndiva     Parents also need support during transition ages- teen years through adulthood- disjointed system of care for young adults #hchlitss

rv_rikard             RT @KatrinaMoody Special Needs Parents need empathy, understanding, and sometimes a good kick in the pants *grin* - we need others #hchlitss

kdhoffman2         MT @yayayarndiva: Autism Awareness means walking w my 15 yo son thru juvenile justice system, residential schools,sheriffs, police #hchlitss

NAMIMass           @KathyKastner There are many advocacy orgs that educate parents, NAMI, Nat'l Federation for Families of Children's MH, etc #hchlitss

kdhoffman2         RT @KatrinaMoody: Special needs parents need others to BE THERE through the ups and the downs. #hchlitss

yayayarndiva     I often need a nap, hot chocolate, knitting and time to do more than be an advocate #hchlitss

KatrinaMoody    @yayayarndiva Great point, transition times are so difficult, with so many voices vying to be heard #hchlitss

lewismal               Q4 Parents need responsive services most. Resources to pay for EI also very helpful. A bit if help with housework & respite #hchlitss

rv_rikard             @NAMIMass <-- Welcome!! :) #hchlitss

KatrinaMoody    @NAMIMass Excellent! I was going to put a list together to post ... NAMI is awesome - trained locally w/them! #hchlitss

KatrinaMoody    @yayayarndiva AMEN! Time to be ME - something often overlooked for special needs parents! #hchlitss

NAMIMass           @rv_rikard Hi sorry I'm late, got involved with something, lost track of time #hchlitss

yayayarndiva     For me co parenting with son's dad who has another autistic child and a gifted child- distance and cross cultural #hchlitss

KatrinaMoody    @yayayarndiva PS - I like naps! They are awesome too, LOL #hchlitss

KathyKastner     @NAMIMass Thank you and lovely to 'meet' you here. Org is so amazing #hchlitss

lewismal               Our network of good friends/family very important. Many accept our sons odds behaviors. Sometime they delight. #hchlitss

yayayarndiva     Me in Sonoma County, da boi in Stockton, da dad/sibs in San Jose...tricounty living for us all:) #hchlitss

KatrinaMoody    @lewismal Great points, there are some resources out there, but sometimes they aren't well-known, & sometimes not enough! #hchlitss

rv_rikard             RT @NAMIMass: Hi sorry Im late, got involved with something, lost track of time <-- not a problem at all!! It is awesome 2 c u :D #hchlitss

KatrinaMoody    @lewismal We have a few staunch friends and family as well! #hchlitss

kdhoffman2         @yayayarndiva There is so little available after child is out of school..res. into residential sits 4 severely affected.. #hchlitss

yayayarndiva     Me an African American born in US, my son's dad from Ethiopia- add cultural differences, perspectives on child rearing vary:) #hchlitss

KatrinaMoody    @yayayarndiva :-) Balancing it all must be challenging sometimes! #hchlitss

lizditz    For children: Wrightslaw for special education law is one of the most important resources #hchlitss

yayayarndiva     @kdhoffman2 trust me I am a looking and da boi due to come home with me in 5-9 months #hchlitss

NAMIMass           @KatrinaMoody This is always a problem of making resources known and what options are available. #hchlitss

rv_rikard             RT @lizditz: For children: Wrightslaw for special education law is one of the most important resources #hchlitss

yayayarndiva     @KatrinaMoody Balance no: riding the wave and detaching from chaos yes:) #hchlitss

lewismal               Autism: how being poor is bad for kids with autism and society big time http://t.co/S49Oc8rT Gr8 new research. #hchlitss

KatrinaMoody    @kdhoffman2 absolutely -- there are waiting lists over 20 yrs long for waiver services here in Indiana ... LOVE Wrightslaw! #hchlitss

yayayarndiva     RT @lizditz: For children: Wrightslaw for special education law is one of the most important resources #hchlitss

NAMIMass           @lizditz Oh yes, Wrightslaw is a excellent source for special ed law and other resources #hchlitss

lizditz    Agree that post-school resources for special needs not enough, many programs not a good fit need more development #hchlitss

yayayarndiva     RT @NAMIMass@KatrinaMoody This is always a problem of making resources known and what options are available. #hchlitss

kdhoffman2         Most of healthcare for people with disabilities is funded by medicaid which is poorly funded in many states #hchlitss

KatrinaMoody    @yayayarndiva LOL - I like that analogy - riding the way! #hchlitss

KatrinaMoody    RT @lewismal: Autism: how being poor is bad for kids with autism and society big time http://t.co/rymrcxx7 Gr8 new research. #hchlitss

KatrinaMoody    THis! RT @kdhoffman2: Most of healthcare for people with disabilities is funded by medicaid which is poorly funded in many states #hchlitss

NAMIMass           In the U.S. Most school districts also have SPEDPACS which can also put people in touch resources #hchlitss

rv_rikard             RT @kdhoffman2 Most of healthcare for people with disabilities is funded by medicaid which is poorly funded n many states <- AMEN! #hchlitss

yayayarndiva     Add my partner, el jibaro from Puerto Rico to the mix- my "nuclear family" cuts across 6 languages and two continents #hchlitss

rv_rikard             RT @NAMIMass: In the U.S. Most school districts also have SPEDPACS which can also put people in touch resources #hchlitss

lizditz    I live in a school district predominantly low income, the community schools movement is helping http://t.co/B26vTOoo #hchlitss

KatrinaMoody    @NAMIMass Yes, also, district liasons usually have access to higher needs services for families of kids in trouble #hchlitss

KatrinaMoody    @yayayarndiva Never complaining about the language barrier here again *grin* #hchlitss

mindthecompany               RT @kdhoffman2: RT @KatrinaMoody: Special needs parents need others to BE THERE through the ups and the downs. #hchlitss

yayayarndiva     Medi-Cal and SSI for da boi...my underemployment, wiping out of all my savings, retirement and loss of a house... #hchlitss

KatrinaMoody    RT @lizditz: I live in a school district predominantly low income, the community schools movement is helping http://t.co/NK1FBvbb #hchlitss

lewismal               Autism awareness = realizing that more tax payer funded Early Intervention services will save $$ long term. Also morally right. #hchlitss

KatrinaMoody    @lizditz also, pulling in community resources can help a lot! #hchlitss

kdhoffman2         Another fact is that the funds from Medicaid & the special waivers DO NOT cover the cost of care... #hchlitss

rv_rikard             @mindthecompany - Welcome!! #hchlitss

KatrinaMoody    @yayayarndiva I hear that, no savings here, live on disability, SSI & my income from working online! #hchlitss

lizditz    oh oopsie @NAMIMass: our district is the only one that has Special Ed PTA ( SPEDPACS ) #hchlitss

KatrinaMoody    Exactly! RT @kdhoffman2: Another fact is that the funds from Medicaid & the special waivers DO NOT cover the cost of care... #hchlitss

NAMIMass           I suggest to parents to be the squeaky wheel and don't be afraid to speak up/speak out for their child, contact their legislators #hchlitss

yayayarndiva     In CA- repeal of AB3632 and county realignment with da boi not quite eligible for Regional Center Services= Bermuda Triangle #hchlitss

KatrinaMoody    @lizditz I don't think we have it here, I"ll need to look up more info ... any links? #hchlitss

NAMIMass           Legislators control Medicaid purse strings so if they don't know the extent of what is needed on a regular basis, i.e., tell them! #hchlitss

KatrinaMoody    @NAMIMass We've gone to legislators before, also to State Depart. of Ed ... the squeaky wheel works sometimes! #hchlitss

kdhoffman2         MT @KatrinaMoody@yayayarndiva no savings, live on disability, SSI & my income from working online<==caring is full time job #hchlitss

lizditz    #hchlitss it has been hard to grow our Special Education PTA many parents don't want to be publicly identified as having a special needs kid

KatrinaMoody    @yayayarndiva Brings up another point - understanding local legislation that affects you and how to be proactive there #hchlitss

lewismal               Twitter & other social media can be a key support for families caring for people with autism link any condition. #hchlitss

NAMIMass           Here is the Mass. Assocn. of Sped Pacs http://t.co/jDyQqiPp #hchlitss

KatrinaMoody    @kdhoffman2 Absolutely, I have 3 boys with mult. dxs, Autism, Epilepsy, Cerebral Palsy, Low Vision ... Caring 4 them IS full-time #hchlitss

yayayarndiva     My personal income barely hit $10K last year, underemployed crone pediatrician with too many degrees, too many mtgs for da boi:) #hchlitss

kdhoffman2         There is a desperate need 4 legislators to understand that parents w/kids w/special needs are not John Tavolta w/loads of cash #hchlitss

KatrinaMoody    @NAMIMass Thanks! Will follow the link and see if there is something similar for Indiana! #hchlitss

AndrewGoodmanF            RT @lizditz "I live in a school district predominantly low income, the community schools movement is helping" http://t.co/3jZkTP0F #hchlitss

yayayarndiva     @KatrinaMoody Proactive with legislation= hahahahha! Surely you jest:) #hchlitss

lizditz    #hchlitss SPEDPAC = Special Education Parents Advisory Committee I know Mass does, I think some other East Coast states do too

KatrinaMoody    @yayayarndiva I so totally hear that! My degree went out the window, can't afford it anyway #hchlitss

KatrinaMoody    @lizditz Definitely following up on that for around here! #SPEDPAC #hchlitss

lizditz    #hchlitss Special Education PTAs are supported by National PTA org; can help...and not quite be a good fit.

lizditz    #hchlitss Special Education PTAs are supported by National PTA org; can help...and not quite be a good fit.

yayayarndiva     @lizditz we have a limping barely effective advisory committee in Sonoma County with SCOE #hchlitss

kdhoffman2         MT @lizditz: it'sbeen hard 2 grow our Special Ed, PTA many parents dont want 2 b publicly identified as having a spl. needs kid #hchlitss

KatrinaMoody    @yayayarndiva *Laughs* I've sent letters to legislators and been available for committe discussions on Restraint & Seclusion #hchlitss

yayayarndiva     With Special Education PTAs sometimes dueling diagnoses #hchlitss

KatrinaMoody    RT @kdhoffman2: MT @lizditz: Is this common? I've noticed some parents don't like having their kids id'd as having special needs #hchlitss

lewismal               If parents got 15 mins a day support from social media and did 30 mins a week online advocacy it could help. Finding time hard #hchlitss

kdhoffman2         @KatrinaMoody I'm glad you mentioned Restraint & Seclusion...you blogged on your experiences... #hchlitss


yayayarndiva     @KatrinaMoody As my son broke my nose at age 10- I have an interesting perspective on restraint and seclusion:) #hchlitss

yayayarndiva     @lewismal are you a parent who works this social media schedule or suggesting this model to us parents:) #hchlitss

kdhoffman2         @KatrinaMoody w/Restraint & Seclusion, most res.programs don't have training on dealing w/those w/autism...very frightening #hchlitss

yayayarndiva     Restraint, incarceration - when my da boi at 12 assaulted me, mental health worker insisted I call the police... #hchlitss

KatrinaMoody    Yes, Restraint & Seclusion is a loaded issue, needs versus overused and dangerous RT @kdhoffman2@KatrinaMoody Im glad you #hchlitss

KatrinaMoody    @kdhoffman2 A lot of instructors aren't trained, or the aides arent - very scary when it comes to our kids, since many can't tell #hchlitss

yayayarndiva     10 weeks in juvenile hall for da boi at 11- scramble for services via Judge and Me cause everybody else moving at a snails pace... #hchlitss

lewismal               @yayayarndiva I'm lucky. I can find that time most days but it is hard. Fall asleep often ASAP. #hchlitss

yayayarndiva     @KatrinaMoody for me my son going to juvenile hall= saved my life, turned his life around w 2 yrs residential school.... #hchlitss

KatrinaMoody    @yayayarndiva At 4 my son could break a door off the hinges ... he just recently broke daddy's foot ... he's now 7 #hchlitss

yayayarndiva     crisis brought me, da dad, da sibs, el jibaro and da boi together- w blended extending family of choice for all #hchlitss

KatrinaMoody    @yayayarndiva that flows into another problem, the juevinile justice system #hchlitss

yayayarndiva     @KatrinaMoody In CA- most are well trained, but circumstances can be dangerous for all concerned... #hchlitss

NAMIMass           Restraint and Seclusion is an issue before US Congress but moving very slowly #hchlitss

KatrinaMoody    @yayayarndiva sometimes the most difficult things are the ones most needed #hchlitss

KatrinaMoody    @NAMIMass They also tried to bring it up locally, been shot down at Fed level once, and back again ... it's a loaded issue #hchlitss

kdhoffman2         We could have another discussion about the number of children w/sight issues, dyslexia, etc. in juvenile justice sys. #hchlitss

KatrinaMoody    @NAMIMass Also there is restraint and seclusion in emergency situations, and then in "to make it easier" situations #hchlitss

yayayarndiva     Orange County teen is missing after release from jail - Los Angeles Times http://t.co/0ETdxTH0 transition age story #hchlitss

KatrinaMoody    @yayayarndiva Read that earlier ... sad :( #hchlitss

yayayarndiva     RT @nwi Autistic teen dies after being shot by Cal City police http://t.co/vzyo4rDE #hchlitss

KatrinaMoody    @kdhoffman2 Couldn't we though - researched it for a while and some of the facts were staggering! #hchlitss

KatrinaMoody    @yayayarndiva very sad :( #hchlitss

NAMIMass           @KatrinaMoody Yes but deescalation techniques exist to address most situations but people either don't know them or don't use them #hchlitss

esfaceblack          RT @yayayarndiva: RT @nwi Autistic teen dies after being shot by Cal City police http://t.co/vzyo4rDE #hchlitss

yayayarndiva     Charlie Manley | Autistic, Down’s Syndrome Teen Found Dead in Gold Coast High-Rise Trash Chute: http://t.co/E3bKor67 #hchlitss

yayayarndiva     Family and police clash after officers fatally shoot an autistic teen in his home http://t.co/0FW5RgIX via @HuffingtonPost #hchlitss

janetbwd               RT @yayayarndiva: RT @nwi Autistic teen dies after being shot by Cal City police http://t.co/vzyo4rDE #hchlitss

rv_rikard             Folks, we have reached 9 pm and a few closing announcements......... #hchlitss

KatrinaMoody    @NAMIMass this was what we made our district reconsider ... they weren't utlizing de-escalation techniques, just restraining #hchlitss

lewismal               Children w issues in juvenile justice sys. New research review on Language issues & juvenile justice http://t.co/FrqS81dO #hchlitss

yayayarndiva     Autistic Teen Dies After Jumping from Moving Ambulance http://t.co/ykyD9H1q #hchlitss

rv_rikard             1st - many many thanks to @KatrinaMoody for being our guest!!! We appreciate you sharing your experience with us!! #hchlitss

KatrinaMoody    RT @lewismal: Children w issues in juvenile justice sys. New res. review on Lang. issues & juvenile justice http://t.co/bgaEDTuZ #hchlitss

KatrinaMoody    @rv_rikard What a GREAT chat! #hchlitss

NAMIMass           Glad I remembered to join the discussion, even if late. Thank you @KatrinaMoody #hchlitss

lewismal               Good chat. Thanks all. Glad I dropped in What does this hashtag stand for? #hchlitss

kdhoffman2         Could we have some final thoughts? #hchlitss

KatrinaMoody    @rv_rikard I was honored to be a part of the discussion! #hchlitss

rv_rikard             2nd - a transcript of the tweet chat will be made avail at http://t.co/bRBTkp5X #hchlitss

rv_rikard             @lewismal - Health Communication, Health Literacy, & Social Science! #hchlitss

KatrinaMoody    RT @rv_rikard: 2nd - a transcript of the tweet chat will be made avail at http://t.co/SBx4R9o7 #hchlitss

yayayarndiva     Thanks @katrinamoody don't forget the mama pediatrician of da boi who loves skittles and wears a hoodie #hchlitss

kdhoffman2         Thank you for being our guest @KatrinaMoody and for sharing some of your experiences w/advocacy w/us! #hchlitss

yayayarndiva     More abt me The Snapdiva Returns http://t.co/Vdc0ftAc, new post coming today #hchlitss

KathyKastner     Learned tons. thanks.RT @KatrinaMoody@rv_rikard What a GREAT chat! #hchlitss

yayayarndiva     RT @kdhoffman2: Thank you for being our guest @KatrinaMoody and for sharing some of your experiences w/advocacy w/us! #hchlitss

KatrinaMoody    @kdhoffman2 Honored to be here! #hchlitss

KatrinaMoody    @yayayarndiva marked it to read later! #hchlitss

kdhoffman2         I'd like to thank all our participants for their involvement and passion on this subject. #hchlitss

rv_rikard             2nd if u r on #Google+ pls circle Health Communication and Health Advocacy https://t.co/lxHto3pK #hchlitss

yayayarndiva     Love it too!RT @KathyKastner: Learned tons. thanks.RT @KatrinaMoody@rv_rikard What a GREAT chat! #hchlitss

KatrinaMoody    At the end of the day, advocacy means looking out for your kids and yourself, know that it's okay to be overwhelmed, ask for help! #hchlitss

rv_rikard             AND Health Literacy on #Googlehttps://t.co/nANoTOYY #hchlitss

kdhoffman2         Please be sure to check out http://t.co/DGiGZead for more information on advocacy! #hchlitss

KatrinaMoody    I think I followed you all - I enjoyed chatting with you all! {group hugs} (Yes, I'm silly that way) :D #hchlitss

KatrinaMoody    RT @rv_rikard: AND Health Literacy on #Googlehttps://t.co/as5O0fYw #hchlitss

KatrinaMoody    RT @kdhoffman2: Please be sure to check out http://t.co/RPOytilc for more information on advocacy! #hchlitss

rv_rikard             3rd - many many thanks to my partner in crime -> @kdhoffman2#hchlitss

kdhoffman2         MT @KatrinaMoody:At end of day, advocacy means looking out 4 your kids & yourself, know that its ok 2 b overwhelmed, ask for help! #hchlitss

KatrinaMoody    Don't forget you can continue the discussion here: http://t.co/6mMVKLBE #hchlitss

KatrinaMoody    RT @rv_rikard: 3rd - many many thanks to my partner in crime -> @kdhoffman2#hchlitss

kdhoffman2         And many thanks backatcha @rv_rikard#hchlitss

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