my heart beats faster than I type

Autism Acceptance Month 2018

I have Autism.  I am Autistic.

I don’t struggle with Autism.

I struggle with places that are not sensory friendly.
I struggle to be in rooms with fans.
I struggle with others not accepting me for who I am in social situations.
I struggle with planning and sequencing my movements (executive functioning).
I struggle with abrupt changes to my routine or familiar spaces.
I struggle with overload.
I struggle with being expected to act like a “normal” adult without Autism, while also struggling with all of these things.

I do not struggle with Autism.  Autism is simply a part of who I am and helps me to think in unique ways that persons without Autism don’t.

I struggle with environment, society, and people.

My cultural environment was designed by people who don’t have Autism.  Society is structured by persons who aren’t Autistic.  People are taught by society that Autistic tendencies are wrong and unacceptable.

So what does Autism Acceptance mean?
What does Autism Acceptance look like?

It means understanding that I need sensory safe spaces to take a break “recharge”, or “regulate”, my nervous system so that it can continue processing a lot of sensory information.

This means, in environments that require me being fully present and attentive, understand that my sensory triggers need to be absent or low grade (with the addition of a safe space to go to for breaks) in order to participate.

It means other people need to sometimes explain to me the social rules and expectations for specific circumstances so that I can still participate without being misunderstood or embarrassed.

It means recognizing I will struggle to transition between tasks and may not be able to stop doing a task my attention is fully focused on just to focus on you.

It means understanding my struggle to transition between classes; gathering my things and putting them into my bag and leaving my desk to go to another class- just to unload and repack all of my things once more- is a massive effort for my brain and body.

It means considering that I may need to stay in one place so that this doesn’t occur or offering a helping hand (or verbal coaching) through these transitions.

It means ensuring I get a detailed heads up on any changes or modifications to my living space (or other safe, familiar, routine spaces/practices/rules) so that my brain is ready to accept and cope with these changes when they occur.

It means I need support and understanding while I learn to develop a way to both recognize and communicate that I need a break in a safe space before an overload meltdown can actually happen.

It means recognizing that I am normal, for an Autistic.  My struggles and behavior are entirely typical of an Autistic.  But you would likely have the same reactions to these things if only your brain processed information like mine.

So, these things are not Autism.  These things I struggle with can also be struggles for other people who aren’t Autistic.  Anyone can struggle with these things.  I just happen to struggle with all of these things while also being Autistic.

So, what is Autism Acceptance, again?

Accommodation, Communication, Understanding, Support….. those are Acceptance.

Disclaimer:
this is my blog.  I can do or say whatever the heck I want. If I want to post incomplete articles and finish them later, I’ll do just that.  Check back every now and then to see if I got around to finishing it. Comment if you want more info sooner/now/sometime this century.
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BREAKING NEWS: movie goers confused by silent film, demand an interpreter

 

Signing impaired movie goers are confused by the silent film A Quiet Place and demand an interpreter be provided so they can “hear” it.

Movie theaters object to this request for accommodation, stating that it ruins the purpose of the film being silent.

Movie goers state, “But we can’t hear anything and we don’t know sign language.” “This has been such a traumatic experience for us, all we want to do is watch a movie with our families but we don’t even know what’s going on.” “Why can’t they just speak?”

The local Deaf community is gathering up crisis counselors to assist and support these folks in their time of need and emotional vulnerability. Interpreters will be provided, as most of those who are affected are signing impaired and unable to communicate in any way other than with their mouths.

More at 7 tonight on Channel 23.

 

Disclaimer:
this is my blog.  I can do or say whatever the heck I want. If I want to post incomplete articles and finish them later, I’ll do just that.  Check back every now and then to see if I got around to finishing it. Comment if you want more info sooner/now/sometime this century.

THIS POST IS ENTIRELY SATIRE.  I LOVE YOU, DEAF COMMUNITY! ❤

Tourette Syndrome as a “Personality”

In this post, the terms “Tourettes”, “Tourette Syndrome”, “TS”, and “tics” are interchangeable.

I want to caution the Tourette Syndrome community against using the term “personality” or the concept “separate personality” to describe their tics.

I’m someone who deals with DID (Dissociative Identity Disorder), formerly known as Multiple Personality Disorder, and it’s frightening to see this concept tossed around so loosely without regard to the idea that some people actually do have multiple personalities; personalities with individual thoughts and opinions that aren’t random in the way that tics tend to be (random brain misfirings).  With DID/MPD, the personalities frequently are fully developed and whole persons who happen to be forced to share the same body.

It’s fine to say that Tourettes, or your tics, are separate from you as a person- that the tics don’t reflect you or your personality.  It’s even okay to say tics seem to have a mind of their own.  It’s even okay to give your TS a different name.  But I would hesitate to refer to TS as a personality, because it isn’t.  Tourette Syndrome can’t make decisions for itself or have its own memories and feelings.  It’s just a neurological disorder.

My fear, in carelessly applying the term “separate personality”, is that the same phrase ends up being used to describe two totally different things.  In turn, this may cause people to assume that they can understand DID/MPD when they really can’t- no one can really know what it’s like to have DID unless they have it themselves.

I happen to have both TS and DID/MPD and so can verify that they are two entirely different experiences.  While my TS is separate from me and my decisions, it is not a separate personality.  And I can say this because I actually do know what it’s like to have separate personalities.  My personalities are whole individuals with human rights.

Take a moment with me to consider ADA law and its interpretations.  It isn’t the wheelchair a person uses that has the right to access a business or building, no.  It’s the person in the wheelchair that has those rights.  And, while a wheelchair can definitely be a part of a person, it isn’t a person itself.

A person with TS is just that, as well.  Tourettes is a part of them, but isn’t who they are, TS is not a person, and tics don’t have rights.  Tourette Syndrome can take over my body in every physical sense and it’s still not a person.

But, with DID/MPD, no matter who is in control of my body, that person in charge is a full citizen with individual rights.

Disclaimer:
this is my blog.  I can do or say whatever the heck I want. If I want to post incomplete articles and finish them later, I’ll do just that.  Check back every now and then to see if I got around to finishing it. Comment if you want more info sooner/now/sometime this century.

Support Group Review: Project HEAL (Philadelphia)

The exact location of this support group is confidential.  Contact the group monitor via email for the address and information.

Project HEAL only recently started their Philadelphia support group, “Communities of HEALing”, in place of their old West Chester group.  This move to Center City has made the group very accessible for persons who rely on SEPTA, PATCO, NJ Transit, and possibly even AMTRAK.  Those who have cars can choose their preferred method of parking in the area or just park & ride from the suburbs via public transportation.  The group location is a short walk from most of the transit stations and bus routes in Center City.  Even in the bitter cold, this walk will be manageable for most.

Communities of HEALing Philadelphia is open to any person with an Eating Disorder, regardless of gender or specific eating disorder type.  It is a very small group right now, as it is only about a month old.  It was a little unnerving, at first, trying to find the location.  The instructions that were emailed to me offered zero landmarks and didn’t mention any neighboring businesses for me to be aware of.  If you get the same response as I did, be sure to ask for these details as they will be helpful in locating the group.  There is no phone number to call for information, so email is about all there is to use.

A group leader will pop down into the lobby (which is more like a small foyer) near the entrance a few times to check for waiting participants in order to bring them upstairs via elevator to the group room.  The location is very modern, very comfortable, quiet, with the group itself taking place in a nice large conference room with gentle lighting.  Before group started, I was asked to sign in and the group leader reviewed the group rules with those in attendance.  Standard group etiquette was expected, with the typical ban of weights/calories/numbers/sizes, but it’s very low key and anyone can pipe up when they’re compelled to speak.  The group leader (the night I attended) was very pleasant and sociable- I do plan to attend again soon.

Do not attempt to attend unless you have registered.  Registration includes a standard contract for all Project HEAL Communities of HEALing support group participants, which outlines the confidentiality rules.  As of this publication, registration and attendance are both free, no charge.  After you have registered, you can request the group location from the group monitor using the same email with which you registered under, and let them know that you have digitally signed the necessary paperwork.

Contact: cohphiladelphia@theprojectheal.org
Website: http://theprojectheal.org/coh-open-support-groups/

Every Thursday 7 pm – 8:30 pm
Location: Center City, Philadelphia
FREE – Registration is required

How to find the group:  When you arrive at the location’s West entrance, stay on the first floor in the small lobby.  Someone will be down to get you before group starts.  There are no signs announcing the group and nobody who works in the building will know about Project HEAL meeting there.  Even if you’re 5 minutes late, someone should be down to see if anyone still needs to be brought up to the group.

Handicap access:  The building is handicap accessible with an elevator, however, there are no automatic doors.  It’s a modern building with low thresholds and decent width doorways.  I believe the hallways were free of carpeting, as well.  There is a wheelchair accessible bathroom or two in the wing where group takes place.

Accessible commute:  When traveling South along the exact street of the location’s entrance, you will want to utilize the sidewalk on the West side of the street.  The East sidewalk has a missing curb cut at one point and is too tall for the average wheelchair to “pop” over.

Service dog access:  I had no concerns.

Disclaimer:
this is my blog.  I can do or say whatever the heck I want. If I want to post incomplete articles and finish them later, I’ll do just that.  Check back every now and then to see if I got around to finishing it. Comment if you want more info sooner/now/sometime this century.

The “Bug Bag”

Pick an old backpack and load it up with some essential supplies for emergencies.  This is a general packing list that should be suitable for both medical and psychiatric admissions, as well as other kinds of unexpected overnights (from evacuations and emergency shelters to something as benign as a weekend at a festival).  My term “Bug Bag” is short for “Bug Out Bag”.

Skip folding your clothes individually.  Instead lay all shirts on top of each other, fold in the sides, and roll them up into one smooth bundle.  Insert into bag.  Do the same with pants (I prefer to fold each pair in half and then stack, then roll).

  • Clothes
    • Shirts
      • 3 comfortable shirts that are easy to wash
    • Pants
      • I prefer pajama pants*, sweat pants*, and a pair of shorts
      • Psych hospitals will want you to remove any drawstrings.
    • Socks
      • 3 pairs should be plenty
    • Underwear (including bras and beaters)
      • 3 of each should be enough
      • Many times, one bra is plenty
    • Shoes
      • Flip Flops
        • Can be used as shower shoes and as slippers
        • Some psych hospitals might prefer the slip-on style be used as “thongs” are sometimes banned for safety.
      • Slippers
      • Sneakers*
        • Psych patients, ditch the laces.
    • Robe*
      • Psych hospitals will want any ties or belts removed.
  • Toiletries
    • Dental
      • Toothbrush
      • Toothpaste
      • Floss*
      • Mouthwash*
        • Packing a non-alcoholic mouth rinse is helpful for psych patients.
    • Bathing
      • 3-in-1 shampoo, body wash, conditioner is ideal
        • Original bottle with label is important for psych admits
      • Lotion
      • A loofa* or washcloth
        • The Supracor SpaCells facial sponge and bath mitt are my favorite for both psych hospital and camping because they dry quickly, aren’t banned, and the facial sponge is really small but can do it all.
        • I’ve also successfully used a small mesh laundry bag (zippered) as a travel wash cloth for the hospital.  It dries fast and can store my soap.
    • Menstrual products*
      • Maxi pads* and light days pads*
      • Tampons*
      • Diva Cup
      • Wipes
    • Nail care
      • Paper/foam nail file
      • Nail clippers*
    • Hair
      • Small plastic comb or brush
      • Hair ties or clips*
      • Shaver* or razor*
      • Tweezers*
    • Q-tips
  • Laundry
    • Quarters for the machines
      • Get a roll of quarters from any cashier or bank
      • Anticipate it costing anywhere between $1-$2 (or more) per load
      • Remember, sink washing is a thing.  Use those quarters for the dryer.
    • Detergent
      • A small/sample bag of Tide Pods should do the trick
      • A sample bottle of Tide (typically found at Target or Dollar Tree)
      • Travel packets of Tide
    • Fabric Softener
      • Totally optional for most people
      • Dollar Tree has sample bottles, worth about 5 full loads.
    • Dryer Sheets
      • Again, optional for most people
      • Just stuff a few in a pocket of your backpack
  • Health
    • It is helpful to keep a list of your current doctors with your medication list
      • Include the doctor’s name, phone number, and fax number.
    • Keep an updated medication list in your bag
      • Include prescription and non-prescription medications
      • Include any vitamins or supplements you may use
      • Include dosage, times typically taken, and what you take it for.
    • Ideally, hospitals like patients to bring all medications in labeled bottles.
      • This isn’t always possible for patients in an emergency, don’t sweat it.
      • Try to make a habit of keeping your meds in a single location at home so that a friend or family member can potentially bring them for you.
    • Keep a list of food allergies, intolerances, and medication allergies
  • Incidentals
    • USB battery or phone charger
    • Calling card
      • Typically, psych hospitals require patients to have one to call family.
      • You can find calling cards at Walgreens
      • It’s also possible to purchase a calling “card” online and print it.
    • Contact book
      • Typically, psych hospitals do not allow patients access to their phones.
      • Keep important numbers for friends and family in a small notebook
        • The notebook needs to be plain bound
        • No spiral binding and no elastic
    • Chapstick
    • Ear plugs
    • Books
    • Food
      • small non-perishable snacks are a good idea, especially for the ER or waiting room.
    • Warmth and comfort
      • A soft sweater that mimics your favorite blanket
        • Packs easy
        • Works for hospitals that don’t allow bedding.
        • Avoid hoods and drawstrings if a psych patient
      • A favorite pillowcase
        • Packs easy
        • Most hospitals don’t mind pillow cases
      • Thermal underwear
        • You know who you are.  Pack it.

Anything starred (*) is an item that may be restricted for psych patients but are a good idea to pack for stays potentially longer than 2 weeks.

Disclaimer:
this is my blog.  I can do or say whatever the heck I want. If I want to post incomplete articles and finish them later, I’ll do just that.  Check back every now and then to see if I got around to finishing it. Comment if you want more info sooner/now/sometime this century.

Treatment Review: Vision of Hope (Lafayette, IN)

In this post, the use of “NANC” and “ACBC” are interchangeable terms for the same organization.  The use of the terms “resident” and “patient” are also interchangeable.

This post is for Vision of Hope at Faith Ministries East on 5652 Mercy Way in Lafayette, IN.

Ideas of things to answer:

  • When were you there:
    • July 2011 – January 2013
  • How many patients on average?
    • 24 residents
  • Does it treat both males and females? If so, is treatment separate or combined.
    • Female only.
  • How often do you see a medical doctor, psychiatrist, psychologist (therapist), nutritionist, etc?
    • Never.  There wasn’t even a nurse there except for the occasional meeting to discuss potential residents (new admits).
    • Counseling sessions with your biblical counselor is about once or twice per week.
  • What is the staff ratio to patients?
    • There were about 2 or 3 interns on staff per shift that directly dealt with the residents and then one head staff person in charge of the interns per shift.
    • Residents were split up into 2 groups, at times, and one intern would be assigned to each group.
    • Each counselor (senior staff) was responsible for counseling about 4-6 residents per week.
      • Per diem counselors were acquired directly from Faith Ministries’ counseling program across campus when Vision of Hope’s counselors were unable to take on additional clients.
  • What sort of therapies are used? (DBT, CBT, EMDR) etc?
    • Nouthetic Counseling (a form of biblical counseling) is the only “therapy” utilized.
    • All counselors were either NANC certified or in the process of being certified (and were under supervision).

Describe the average day:

  • What were meals like?
    • Meals were “family style” in a dining room.
      • There were several tables and an intern would sit at (almost) each table to supervise Phase 1 residents.
      • I remember being assigned seats at times and not at other times.
      • Whichever group of residents didn’t cook/prepare the meal would be responsible for cleaning the kitchen and dining room after each meal.
      • Breakfast was split into two groups/shifts where half of the residents would get breakfast as Group A and then shower after.  The other half of the residents were Group B and would shower before breakfast.
        • This not only organized the shower schedule, it also prevented Group B members from possibly purging.
        • Group B was responsible for cleaning up breakfast every day, Group A was responsible for setting up breakfast and starting the coffee.
    • You had to “clean your plate” (finish everything you were served).
    • Half of the residents each day would cook the meals for the entire house (about 40 people) with one intern supervising meal prep.
    • Meals were decided by the Household Manager (who was equally responsible for finances, house chores, schedules, and nutrition… but had no dietetics degree).
    • There were optional snacks throughout the day.
      • Sometimes underweight residents were required snacks.
      • I remember there being a snack before workout, an hour before lunch (before leaving to clean the Community Center and Gym), and a snack around night meds.  There may have been one more.
  • What sorts of food were available or served?
    • Just normal family food.  Somewhat southern but mostly traditional American platters.
    • Everyone got the same thing.
    • Seconds were optional.
    • Dessert was optional and offered about twice per week.
  • Did they supplement? How did that system work?
    • No.
  • What is the policy of not complying with meals?
    • Consequences, Consequences Homework, Probation (involving more consequences, being dropped a level, more homework, and having counseling sessions taken away), and being asked to leave the program- in that order.
    • Consequences can include losing the “privilege” of being able to speak.
  • Are you able to be a vegetarian?
    • No.  Vegetarianism is not allowed and Kosher is not accommodated as it goes against their religion.
    • Food allergies were hardly accommodated without specific medical documentation.
  • What privileges are allowed?
    • Residents were allowed cameras but the cameras had to be locked in sharps/contraband when not in use.
    • All residents exercise at the gym each day.
      • Exercise usually consisted in walking in circles at 6 am for an hour on a track.
      • Underweight residents were restricted to sitting during workout but were required to still be awake while watching.
    • Phase 1 residents were allowed iPods (no internet) at night, during morning workout, and on weekends.  Sometimes iPods were allowed during week day house chores, as well.
    • Phase 2 residents were allowed to have their cell phones at all times.
    • Phase 2 residents were allowed to use the classroom computers upstairs or check out their personal laptops from the secretary during the day.
      • Computer use was only allowed if they were specifically approved to do so by their counselor and had it put it on their approved daily schedule.
        • If a resident missed their planned computer time, they were not allowed to use the computer that day.
      • What a resident specifically did on the computer also had to be approved.
        • If a resident wanted to watch videos on YouTube, she had to write exactly which videos she wanted to watch and have her counselor sign off on it.
          • Ex: “Christian music videos” might not have been specific enough get approved but “music videos by Jeremy Camp and MercyMe” would likely have been approved.
    • Phase 2 residents were required to have a job nearby that paid.  It was about a 3/4 mile walk to the nearest bus station.  A couple of jobs were available on campus (through the church’s daycare or gym).  Very few residents were exempt from this requirement.  Residents who were disabled (couldn’t legally earn money) would get volunteer jobs.
    • Phase 2 residents could apply to local colleges to do some classes.
    • Phase 2 residents were allowed to use the gym cards to access the exercise equipment (and maybe also the pool?) at the Community Center next door.
  • Does it work on a level system?
    • Yes.
      • Phase 1: is a minimum of 6 months for all residents and is the most restrictive.
      • Phase 1b: is where you are still in Phase 1 and do everything a Phase 1 resident does but you also go out to job interviews.
        • The sole purpose of this level is to get a job so you can be in Phase 2.
      • Phase 2: is where you’ve completed Phase 1 and now have a job.  Your day consists of working at your job, eating some meals at Vision of Hope, counseling homework, working out, and sleeping at Vision of Hope.
      • Phase 3: is where you no longer live at Vision of Hope.  You either move back home, move somewhere else, move in somewhere locally, or some ladies would apply to stay at the Sunshine House (which was a Christian transitional living program in the area but was not affiliated with Faith Ministries).
        • Counseling would occur either long distance by phone/Skype/email or on campus (for those who chose to stay in the Lafayette area).
      • Graduation: is when you complete Phase 3 and have a special ceremony.  It can take years to graduate the program.
  • How do you earn privileges?
    • The only way to progress from Phase 1 to Phase 2 is by “getting saved” (even if you were a Christian before joining their program, you’ll likely have to re-convert or do salvation homework to prove you’re “actually saved”) and making it through the minimum 6 months of Phase 1.
    • Do your homework.
    • Don’t sin (not limited to, but including eating disorder, self harm, or addictive behaviors).
    • Be submissive.
  • What sort of groups do they have?
    • Curriculum groups include decades of recordings from Faith Church sermons and worksheets you have to fill in while listening.  The curriculum recycled about every 6-8 months.  This group is usually an hour per day.
    • Book groups are an hour or so of group study on particular Christian books that function as the textbooks for this group.
      • Examples of books used are: “Momentary Marriage” by John Piper, “Girls Gone Wise” by Mary Kassian, “Heaven” by Randy Alcorn, “Soul Physicians” by Robert Kelleman, and several books written by members of Faith Ministries (namely, Amy Baker).
    • Devotionals/Study Hall… you just do your homework and study your bible and journal about it.  There were specific devotional worksheets required.  Interns would typically assign a bible passage for everyone.
    • Worship… an intern would select lyric videos on YouTube and project them onto the wall and we’d sing along.  The good interns let us take requests.  The musically talented interns would use their own instruments (one even had a harp).
    • GNO “Girls’ Night Out” on Fridays were the weekly field trip.  Every other week it would be a free activity (like a hike or visiting someone’s house to make fudge).  The odd weeks would be a paid activity (paid for by the ministry or by a sponsor) such as ice cream, Chipotle, photo scavenger hunts, bowling, roller blading, or the annual school play (there was a private Christian school on campus).
    • Girls’ Night In on Saturdays was typically doing nails, a craft, a game, maybe something fun in the kitchen, or a movie.
    • Wednesday night “FCI” (Faith Community Institute) bible study classes at the church which involved going to the church and joining a “class” with the other parishioners.  Each course lasted quite awhile, a couple of months maybe?  Phase 1 girls had to join the same course and attend with a VOH intern.
    • ABF “Adult Bible Fellowship” every Sunday morning.  Phase 1 girls usually had to go to an ABF with a VOH intern there, unless they got special permission or a VOH volunteer to supervise them.
  • What was your favorite group?
    • Probably worship because it was fun.
  • What did you like the most?
    • Not having to worry about insurance cutting out.  The only people who determined my length of stay there were myself and the staff at the program.
    • Really comfortable house.
  • What did you like the least?
    • The inflexibility of the program.  They don’t treat us as individuals with needs.  Just as people with sin.  Everything and anything is considered “sin” and will be punished as such.
    • Being denied medical care even when I offered to pay for it myself.  I couldn’t even access a phone to call an ambulance myself.
  • Would you recommend this program?
    • In general, no.
    • There is no dietitian on staff to prescribe meal plans to residents and Phase 1 residents never get to learn how to eat.  Phase 2 residents were assigned exchanges but by a staff member with a finance degree, not a dietetics degree.
    • If someone is truly interested in this program because it is in line with their own religious beliefs, I highly recommend going to a secular program first to become medically stable (either with psych meds, detox for substance, or refeeding for eating disorders) and then going to this program.  There is no medical support at Vision of Hope and the program has even denied seeking medical care for certain residents who clearly required it (myself as both witness of this and as victim of this) and even asked for it.
  • What level of activity or exercise was allowed?
    • Lots and lots of physical chores in the house, in the church, on campus, in the school, in the community center, and on the grounds.
    • Workout every morning.
      • Exercise usually consisted in walking in circles at 6 am for an hour on a track or around the pond.
        • Despite being specifically advertised that we would use the gym equipment and pool facilities, we never got to use them.
        • One time we got to use the pool, but it was a Church event and essentially a one time deal.
      • Underweight residents were restricted to sitting during workout but were required to still be awake while watching everyone else walk around the track.
      • Sometimes we got to play basketball or do circuit training.
    • GNO activities like hikes or visiting a lake.
  • What did people do on weekends?
    • GNO on Friday night.
    • GNI on Saturday night.
    • A laid back Saturday morning group where we’d listen to a recreational book such as Hinds’ Feet on High Places or A Pilgrim’s Progress.
    • Extra chores on Saturdays, deep cleaning style.
    • Church all morning on Sundays plus Church Family Day once per month on Sunday nights.
  • Do you get to know your weight?
    • No, but sometimes you’d be told if you’ve been stable.
  • How fast is the weight gain process?
    • No idea.  Some people took ages to visibly gain anything.
  • What was the average length of stay?
    • A year and a half or longer.  Sometimes years.
  • What was the average age range?
    • Mid-teens to early thirties.  But I don’t recall what the oldest cut-off age was.
  • How do visits/phone calls work?
    • One 15 minute phone call per week on one of two phone call nights.
      • Special cases would get a second phone call or a 30 minute call.
      • A staff person would listen in on all phone calls and take notes on what you said, which were forwarded to your counselor.
    • There were visiting arrangements available after your first month was over.
    • After about 2 months you could get “checked out” for the weekend by family, if approved.
    • I recall some residents being allowed to sit with family members at church, if their family attended.
    • A resident was allowed to go to a different church on Sundays with her family because it was “good enough” by Vision of Hope’s standards for Christianity.
  • What kind of aftercare do they provide? Do they help you set up an OP treatment team?
    • None.  No.
    • If you stay in their program, you keep whatever counselors that get assigned to you while you’re in the program (including Phase 3).
    • If you finish the program, you don’t need counseling anymore but can stay in touch.
    • If you quit, or are “asked to leave”, they do next to nothing for you.
      • Those who did not complete the program were essentially shunned for a period of 6 months after leaving.  VOH had a “zero contact” policy during this time for both staff and residents. (No phone calls, letters, or messages to those who left the program.)
    • If anything, they’ll “pray for you”.  That’s your aftercare.
  • Are there any resources for people who come from out of state/country?
    • Not really.  Most people came from out of state.  Quite a few were from other countries.  You just show up on the day/time you’re supposed to show up and how you get there is up to you.
  • Other?
    • We cleaned the community center and gym almost every day.
    • After I left, they also added daily house chores.
    • There were room checks every morning for cleanliness and bible verse drills while waiting for checks.
    • Room searches occurred infrequently but were rather thorough.  There were only a couple of things that ever got overlooked while I was there.
    • We were put to work every single day.  It was like we were working to pay off our “free treatment”.
      • I’m all for “giving back” to a program that literally housed me for free (at the time, room and board were free) and I didn’t even mind the work existing (because I was happy to “give back”, which is how I personally viewed it) until after I left the program and realized that it had zero therapeutic value and the time could have been better spent doing actual therapy.  It was just teaching us to be drones.
      • Two persons each week were assigned to do “House Laundry”, which included various linens and used cleaning rags/dish rags.
      • We were frequently utilized for menial tasks such as stuffing envelopes, to ask donors for more donations, as well as making and signing tons of cards for various purposes.
      • We would be utilized for other fundraising opportunities, setting up the Race for Hope, setting up the banquet, giving speeches/testimonies, speaking a public hearings on behalf of the church, gift wrapping for an annual holiday ministry, serving at the Living Nativity and Stewardship Celebration, volunteering for the ACBC conference, and running a table at the Subaru factory’s Halloween festival (which was weird considering VOH doesn’t recognize or support Halloween…. it took a lot to even get them to let us do Valentines).
      • In the mornings we would clean the church’s gym/workout equipment (at the community center which was essentially like a YMCA).
      • In the afternoons we would alternately clean the Christian school or the church sanctuary (depending on the day).
        • This included cleaning bathrooms, locker rooms, and handling cleaning chemicals and equipment.
      • I remember doing a lot of window washing, water fountain sanitizing, vacuuming, and mopping at the community center, as well, throughout the week.
      • We were responsible for shoveling Mercy Way drive ways and sidewalks.  If the snow fell overnight, shoveling would replace our morning workout.
      • We were responsible for outdoor chores once or twice a week.
        • Mowing the grounds at Vision of Hope and around the pond (huge property) with gas powered push mowers (even the underweight residents).
        • Weed whacking.
        • Weed pulling all of the garden beds on the Mercy Way side of campus and around the pond.
        • Watering all of the giant flowering pots.
    • You were required to ask family and friends for donations for the annual Race for Hope fundraiser 5k and the annual banquet.
    • Laundry was assigned at specific times for each resident once per week.  If you missed your laundry day, or if you had a schedule conflict, you’d have to try to swap with another resident.  If you couldn’t swap or pull favors (“hey can you put some of mine in with yours?”), then you were either SOL or had to wash by hand in the basin and hang dry.
    • Speech and expression were highly censored.
      • Speech:
        • No cursing.
        • No talk about past or current sins (including past history of eating disorder behaviors, addictions, promiscuity, and self harm).
        • No “glorifying sin”…. hard to explain but essentially don’t talk about anything that isn’t G rated.
        • Some residents would lose the “privilege” to speak at all.
        • Some residents would be required to say the same phrases over and over, regardless of whether they agreed with those phrases.
          • Example:  “Yes ma’am, I will obey joyfully and whole heartedly.”
        • Phone calls were strictly monitored by a staff person who would listen in on phone calls and take notes on what you said, which were forwarded to your counselor.
      • Writing:
        • All mail and phone calls were monitored.  Residents were not allowed to receive mail until the counselor had opened, read, and signed off on it.  Outgoing mail also had to be unsealed and approved, iirc.
        • Vision of Hope implemented “thought journals” for some residents, where a resident would be required to write all of her thoughts down every 15 minutes.  These then would be reviewed by her counselor.
      • Physical expression:
        • The church campus itself banned dancing, but Vision of Hope would allow it.
        • There was a strict “no touching” policy for all staff and residents.  To the point of having to ask for permission to braid or curl someone’s hair.
        • No sharing of belongings was allowed.  No hand-me-downs, either.
          • Unwanted belongings could be donated to the “Blessings Closet” where other residents could “buy” those items with Blessings Bucks earned by memorizing scripture.
          • Lost and Found items also went to the Blessings Closet and had to be “bought” back by their rightful owner.
      • Reading:
        • All reading materials had to be approved by your counselor.  Anything that wasn’t fundamentalist Christian or required for school would not be approved.
        • Materials from other religions (including Catholicism) were likely not approved.
      • Music:
        • Only approved Christian music was allowed.
      • Clothing:
        • Vision of Hope had a very strict and very detailed dress code.  Residents were expected to dress conservatively and modestly, and as if they were at their job.
          • Sweatpants, yoga pants, jogging pants, etc were not permitted during the day and would even be taken away if caught wearing them.
          • Jeans were allowed but couldn’t be revealing.
            • Vision of Hope didn’t allow their residents or interns to wear jeans to church services.  But the church itself didn’t have a rule against jeans.
          • Blankets were banned outside of bedrooms during the day and so wearing layers was encouraged.  Winters were cold and summers brought some frigid air conditioning.
            • I would secretly wear sweatpants under my long skirts and dresses in order to cope with the climate indoors.
          • Spaghetti straps, camisoles, necklines that showed chest or cleavage, short shorts, plumber butt pants, and more were banned.
            • If you were caught wearing these items without a modest layer underneath or over it, you would be asked to change your clothes and the offending item would be locked away until discharge.
            • I bought the entire collection of Cami Secret modesty guards and it was worth every penny.  I was able to continue wearing all of my shirts and dresses without risking confiscation.
              • The nickel in the buttons gave me a rash, but still worth it.
              • Honestly, it might have been more worth it to have never done this program at all.
            • One time VOH hosted a clothing swap where no Blessings Bucks were required and all clothes were available to whomever needed them and anyone could give away their unwanted clothing to someone else who could use them.
              • This was in response to a lot of residents complaining about their clothes getting confiscated due to being “too revealing” after the resident had gained weight.
    • The only information we could access about the outside world was through a daily local newspaper (The Journal & Courier) and the rare occasion where the TV would be allowed on for local news.
      • Sometimes we’d get to peek at the televisions in the gym while cleaning, which were frequently tuned to CNN.

LGBT:
You will essentially go through conversion treatment for gender and sexuality issues to conform with being a cis-female heterosexual.  Even asexuals are not entirely safe from this as residents are taught that sex is a requirement to honor G-d in one’s marriage and to honor one’s husband.

Handicap Access:  There was one deaf resident when I was there who was oral/auditory.  There weren’t any special accommodations given to her, other than for subtitles on videos and ensuring that she had a hearing roommate for emergencies (fire evacuations).  My blind friend tried to apply to Vision of Hope back in 2011 and they denied her access to their program because they were unwilling to utilize braille resources or accommodate her screen reader laptop (with which they could have emailed her digital texts so her computer could read them to her).  There was one disabled patient that required mobility equipment there who was accommodated for the most part but was mostly on bed rest until she left.
The house was two stories with no elevator (unless they’ve converted the downstairs and upstairs closets into one since I left, you’ll have to ask) and three staircases.  A majority of the groups are upstairs in the classroom.  The upstairs is entirely carpeted.
The downstairs has both tile and carpet.
I recall one bedroom suite had a fully handicap accessible bathroom.  I believe this suite was on the first floor.
The main entrance to the building had steps but the side entrance is mostly wheelchair accessible.  The back porch is not accessible.
The dining room and downstairs living room are both accessible.  The “public” toilets downstairs and upstairs are not accessible.

The community center/gym is generally wheelchair accessible except for the upstairs walking track.  The church and Christian school are generally wheelchair accessible with one elevator available on the school side to access the upstairs bible fellowship groups.

Service Dog Access:  I did not have a service dog when I went to this program.  Churches and ministries such as Vision of Hope are not required to abide by ADA law.  There was a teacher at the Christian school on campus who had a guide dog, which implies that Faith Ministries has worked with service dog handlers at least once before.  Now that Vision of Hope charges for room and board (not treatment), they might be required to adhere to the Fair Housing Act (which requires certain landlords to allow assistance animals in no-pets housing), but I can’t say for sure that they actually fall under this.  You would need to ask.  And you would need to be prepared for the possibility that your service dog/assistance animal may not be able to accompany you to certain areas on campus.

Disclaimer:
this is my blog.  I can do or say whatever the heck I want. If I want to post incomplete articles and finish them later, I’ll do just that.  Check back every now and then to see if I got around to finishing it. Comment if you want more info sooner/now/sometime this century.

Assistance from Service Dogs for People with Eating Disorders

GuidingGolden  provided a really thorough blog post examining the benefits of a service dog for persons with eating disorders.  I encourage everyone to read it from start to finish- there’s a lot in there on how and what to train a dog to do.

Here’s a really important quote from their post, regarding the status of being disabled in order to qualify for a service dog at all:

“It’s important to emphasize that a diagnosis is not synonymous with a disability. While two people may receive the same diagnosis, that doesn’t mean they are both affected by the criteria an individual must meet to receive such a diagnosis in the same manner. The manifestation of a diagnosis for one person may be significantly life-limiting, while the other is able to manage symptoms and care for himself or herself independently. This is not exclusive to eating disorders; it is applicable to any medical condition, whether it is psychiatric, neurological or physical in nature.”

Dog Day

National Eating Disorders Awareness Week 2013

We are currently in the midst of National Eating Disorder Awareness Week 2013 (Feb 24-March 2nd). The message NEDA (National Eating Disorders Association) is promoting is, “Everyone knows someone.” The unfortunate reality is that this holds true with far more prevalence than most people are aware; According to NEDA, “30 Million Americans will suffer from an eating disorder during their lifetime.” Don’t think you know someone with an eating disorder? If you know me, you do. I’ve lived with an eating disorder for the past ten years.

In honor of ‘NEDA Week 2013,” I’d like to dedicate this post to exploring the potential for assistance that service dogs may offer to those struggling with eating disorders.

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A Brief Review of the Role of Service Dogs
Service dogs are dogs who receive individual training to do work or perform tasks which mitigate their handlers’ unique…

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