Thursday, February 18, 2010

Adventures in special needs – A Nordic ski resort

At one point in my life if I felt I needed a challenge I’d ride my bike a few thousand miles, or explore a foreign land.

Now I can dwarf those experiences with a simple four day outing to a Nordic ski resort.

I’m still recovering from this challenge. It was successful, but it did push the envelope.
We started a few months ago with one neurotypical child and two on the “autism spectrum” (a somewhat meaningless concept, but we don’t yet have a better classification). One child had done some snowboarding with limited success and had refused any skiing of any sort. Another had done some downhill skiing and decided, after a single face plant, that downhill skiing was insane. A third had very nervously descended a bunny hill.

We ended with all three navigating intermediate cross country ski trails in the wilderness (really) of northern Wisconsin.

The unique challenges here included:
  • Three children, two parents. This stuff isn’t easy even for neurotypical children and it was very rare to have all three in a reasonably good mood at the same time.
  • Weather. These children are used to winter, but an autistic meltdown can take a long time to resolve. Sitting around at 10F for an hour can be a problem, and they don’t necessarily respond to cold in a rational way.
  • Clothing. See weather. Spectrum kids and adults can be resistant to logical dressing.
  • Gear. Actually, this was easy. Cross country skiing fear is much more comfortable than downhill or even snowboarding gear.
  • Unfamiliar environment, atypical stimuli: Northern scrub forest, harsh winds, knowledge that there really are wolves and cougars in the woods (even if they usually stay out of sight) – all troublesome. One child has a very strong need to always know exactly where he is in relation to the home base and to all family members – the first time on a trail was extremely scary. (The second time was easy however – his location memory is exceptional).
  • Different schedules: One child takes hours to come online and peaks in the afternoon. Another rockets at dawn and is done by noon.
The full story of how we made the transition for all three over about two months would take a book to tell. It required genuinely Machiavellian manipulation of sibling relationships and a wide variety of motivators.

There are some quick lessons, however, that one might apply to a variety of similar special needs adventures.
  1. Food: As a result of the climate, exertion, and anxiety the children needed to eat five times a day. If they were short on food they all melted down. We needed to keep them fueled with solid, high fat, high protein meals.
  2. Everyone melted down sometime, including the neurotypical child. Interestingly they rarely melted down all at once, perhaps because there was a strong sense of group solidarity. Each child felt their parents had gone insane and they needed to look out for one another.
  3. Choose a friendly resort in decline with a very good pool. The downsides of the resort people having limited knowledge of what worked and what didn’t was outweighed by the warm water swimming pool. The need to serve to the smoking, drinking, and spending snowmobiling market meant our kids oddities went unnoticed.
  4. Our mobile phones were useless, but we had modern digital “walkie-talkies”. These things are cheap and absolutely amazing. REI has very good ones.
  5. It would have been better to have had a third person along, but it was doable.
  6. You need to be fully on your game. Get lots of sleep. Plan carefully and be ready to abandon every plan. Have contingencies for your contingency plans, and be ready to abandon those. Know when to retreat and when to advance.
  7. Find a local expert and review all the trails in depth. In our case one parent woke early to scout out trails in advance and plan routes – that worked well. Get the best possible maps. Have a compass.
  8. Carry a big pack to hold clothes, jackets, reserve materials, etc.
  9. Be ready to stop a passer by and send them for help. We never had to do this, but you have to be psychologically ready to bail.
  10. Establish a routine very early. Our was: TV and breakfast while Dad scouted routes. Swim. Eat again. Skiing. Eat again. Game room/rest/computer use. Eat. Ski/Other. Eat. Swim. Video.
  11. Bring chocolate on the trail.
  12. Lower the room temperature before dressing. Open a window and discretely turn off the heat. This is a big help.
  13. Overdress. They need to be warm at the start. Clothes can be removed and placed in the backpack.
  14. The kids snow pants were too heavy. We’d have done better with lighter wind pants over the nylon loose stretchy pants our boys favor. Invest in clothing.
There’s much more, but those are the ones I can remember. The most disabled child who we thought least likely to succeed turned out to be a wizard – he skied circles around us wearing only a long sleeve shirt when the wind chill was probably 10F. Everyone succeeded, all our goals were met, and the parents will eventually recover.

Update 2/1/2012: Years later we've done this several times. The biggest issue lately was with our neurotypical daughter, who gets anxious about downhills and loathes falling behind her brothers. Which is to say, we were totally victorious. Until I reread this by accident, I'd forgotten how hard it was to get this initial success.

Behavior motivation: text message controls

One of my charges combines substantial cognitive and psychological disabilities with a profound insensitivity to common motivators.

Yes, this is challenging.

On the one hand, he has substantial limits. In a modern post-industrial society, he is profoundly disabled. In this he has a lot of company – in our emerging world many neurotypical males with an IQ below 120 have unknowingly joining the world of the effectively disabled.

On the other hand, he often performs far below his maximal abilities. Sometimes that’s because his peak performance is very dependent on environmental factors such as medications, time of day, sleep reserves and satiety. Quite often, though, it’s because he doesn’t respond well to any behavioral motivators, including extinction, operant methods/positive reinforcers, negative reinforcers (time out, privilege loss) and peer groups. That’s not to say they don’t work at all – it’s just that there’s a great disconnect between behavioral tool and response. Instead of power steering, you turn the car by dragging a foot.

When he is motivated, his learning and performance increase dramatically – sometimes into the normal range or even beyond. I remember one hockey practice where fast skaters got to stop sooner than slow skaters. He vaulted from the bottom 20% to the top 10% – without seeming to work all that hard. He then returned to his usual easy pace. When he’d misplaced his prized mobile phone the child who can’t remember anything recited a Temple Grandin-style video-recall linear recitation of everything he’d done with the phone – from the morning to the last moment he touched it.

So we’re always looking for new motivational tools to close the motivation gap and bring his behaviors closer to his maximal abilities. Anything he shows a strong interest in is fodder for behavioral motivation.

The most recent motivator comes from a combination of his technology love and the AT&T parental controls on his mobile phone account. He has grown very fond of texting.

One the one hand, we really want to encourage his texting. It is by far his most common form of written expression. He texts a teenage neighbor, who is kind enough to reply. He texts his school mates. He texts me.

On the other hand, anything he likes that much is a lever.

The way we currently use the texting leaver is we pay $15 a month (vastly cheaper than far less effective reading/writing tutoring) for 1,500 messages. This is well below his current use of about 500 texts a month. I then use the AT&T parental controls ($5/month) to set a cap. If he meets various various behavioral goals, such as working on math homework, he never sees the cap. If he’s not motivated, he runs out of text messages.

It’s just one more lever. We have to be careful not to overuse it, but every one we add helps move us forward.

See also:

(Honestly – these are good. On putting this list together I realize I’d forgotten some effective approaches I’ve used in the past.)

Thursday, February 04, 2010

The sad story of the autism vaccination scam

Rahul Parikh, on the occasion of Lancet withdrawing the fraudulent Wakefield Autism/immunization paper, reflects on its legacy.

It's a sad story. Wakefield, who ought to be in prison, prospers. Parents agonize over immunization. Misguided publicity hounds perpetuate fraud. Children suffer from preventable illnesses. Credulous advocacy groups waste time and money chasing a lie.

There's no justice. It will take another decade to get this fraud behind us.

Tuesday, February 02, 2010

Residential occupational training for special needs adults - Eastern New Mexico Special Services

Eastern New Mexico university offers a residential training program for adults with special needs. They are part of the western educational region, so it’s local tuition for neighboring states.

Special Services - Occupational Training Program

The Special Services Department provides services to students with disabilities. We maximize educational and career opportunities, assist disabled students with integration into the university community, and accommodate those students with services needed to allow full participation in all programs. Our certificate program is designed for students who, with appropriate training, are able to obtain positions in competitive employment. We currently have a three semester program, with a second year being developed. This second year will focus on independent living skills and employment.

Entrance Requirements:

A vocational evaluation less than 2 years old. (Either call our office to schedule, or obtain one privately).
Complete documentation and full disclosure of medical/developmental disabilities.
18 years of age or older.
Ability to self-medicate with no assistance.
Independently awaken to alarm/attend classes regularly and on time.
Maintain appropriate hygiene/laundry/dorm room.
Demonstrate effective communication skills and appropriate behavior.
Meet minimum entrance requirements for the selected study discipline.
We have a zero tolerance for any drug/alcohol use and students will adhere to the Standards of Behavior as outlined in the campus handbook.

Certificate of Occupational Training Courses:

Vocational classes and practicum’s/Job seeking skills/resumes
Independent Living I, II, III and labs. Advanced IL for second yr.
Recognizing Conflict/Conflict Management
Physical Education (adapted)
CPR/First Aid
Driver’s Education (optional) with lab
The College Experience

The Special Services Occupational Training Program leads the student to a Certificate of Occupational Training (COT). There are several career programs available (see course catalog). Vocational training emphasizes hands-on instruction, including 12-20 hours per week of on-campus classroom, lab, and off-campus practicum experiences. The technical skills taught in each career field prepares the student for competitive employment in that discipline.

Occupational Training Areas:

Auto Mechanics
Certified Child Care Attendant
Floral Design
Food Services
Certified Nursing Assistant/Home Health
Office Skills
Refrigeration and Air Conditioning Maintenance
Sanitation, Building Maintenance, and Grounds Keeping
Veterinary Assistant

Special Topics:

Animal Healthcare
Stocking and Merchandising
Dorm Life & Independent Living

Students are provided opportunities to build positive social skills and demonstrate appropriate social behaviors by living at Sierra Vista Village. Although supports are in place to assist our students with the social challenges of living on-campus, all students are considered adults and are expected to adhere to university policy and standards of behavior. Our department has staff available between 7:00 a.m. – 10:00 p.m. Monday through Friday to assist students in their transition to dorm life, learning domestic skills, and making good decisions now that they are living independently.

Students and parents must remember: our educational program is geared toward students with disabilities; however, all students are adults, and must be able to live in the dorms and attend all classes and work sites with no assistant. Each student is expected to take responsibility for their educational and personal success or failure, and demonstrate maturity and behaviors appropriate for a college campus.

Although second year students are allowed to live in the apartments on campus; first year students live in the dorms.

Independent Living classes and labs are required courses for the COT program. In addition to labs, students choose a one hour elective from the following as part of the lab requirements:

Sign Language
Support from the Special Services Department:

Academic and tutoring support is provided as needed.

Computer Labs are open for students to use
Limited health concerns are seen by our Certified Family Nurse Practitioner.
Campus Security 24/7
Social Events

Resident activities are held, such as movies, dances, B-B-Q’s, and day trips. We also have Special Olympics and the snow skiing club.

Residence Hall

Our students gain independence as they display responsibility. Staff supervision is active until curfew and, as with any college student; our student’s are expected to adhere to dormitory rules and regulations:

Curfew: 10:00 p.m. M-TR - 12:00 a.m. FR-SAT
Sign in/out log
Weekend check out
Weekly room inspections
No opposite sex visitation in rooms
No private transportation for the first semester

Our career training allows students to learn marketable vocational skills, as well as practical life and independent living skills. We pride ourselves on the (avg.) 75% employment placement of graduates. Graduates leave our campus with verification of training (COT), certifications, valuable life experiences, and positive personal growth.

Verification of Training

COT from Eastern New Mexico – Roswell, an accredited university.
Checklist showing technical skills mastered in the chosen discipline.

The web site has additional materials …

Google suggests an article marketing a vocational assessment program for additional background  …

Marla Wittkopf is the vocational evaluator with the Special Services Department at Eastern New Mexico University-Roswell (ENMU-R) in the state's southeastern area. Marla has been with ENMU-R for seven years and is a tenured faculty member at the institution. The Special Services Department is part of the Developmental Studies Division, and ENMU-R is a branch of ENMU-Portales. This past academic year, Marla tested 115 students, most of whom subsequently enrolled in the Special Services Occupational Training Program.

The mission of Special Services is to provide occupational and social skills training for  students with disabilities who come from across the United States. Although the program can accommodate students without disabilities, the great majority of them have various disabilities. Many have learning disabilities, and throughout their lives they've been constantly told about all the things they can't do.  "It's neat to see their reactions when we help them realize all the things they can do," said Marla.

The program offers students vocational evaluations, counseling, and training within a work setting of their choice in the Roswell community. If program graduates decide to remain in the Roswell area, Special Services staff are often instrumental in aiding them in finding  employment in their chosen occupations.

The Special Services program is unique in the country in that Special Services students live in dormitories on campus, just as students without disabilities do. "They get the real college experience that way, and it also challenges them to learn important new skills," said Marla. "Their days are broken up into two parts, classroom work in the afternoons, and practicum job site training in the mornings. Living away from home in a dorm setting is a big, big change for most of them, and they take classes to help them adjust to living on their own. They take such courses as independent living, conflict resolution, and adaptive physical education."

At graduation, students are awarded certificates of completion that list all of the work skills they have mastered--at least 75% of the job's specified skills. Seventy percent of those who begin the program graduate, and about 75% of the graduates are successfully placed in jobs after they complete the program. "And often the three semester program builds their self-confidence to the point that they want to continue their formal education," said Marla. "It serves as a springboard for students who want and are able to earn their Associate's degree."…

… Many of the students enter the program with specific occupational goals in mind, and it's often the case that their goals are unrealistically low or unrealistically high. "It's not unusual for them to come in saying they want to be physicians or lawyers. Pro3000 and the work samples help them see very clearly where their abilities are compared to the occupational requirements…

… "Many of our students come in having been beaten down all their lives, people always telling them all about what they can't do. Of course they're discouraged," Marla said. "I stress to them that everybody has their own, personal ways of doing things, and we all have areas of strengths. There's no one 'right way' of doing things. We help students discover what they can do. We also provide assistive devices and adaptive procedures  (accommodations) where needed. We view those as the equivalents of the reasonable accommodations employers are required to provide disabled workers under the Americans with Disabilities Act….