A Parent Journal
Although not required, we recommend including in your application a brief
parent’s journal describing your child’s first 18 years. Remember, you are
trying to give a vivid picture to Social Security of how Prader-Willi Syndrome
affects your child’s life. Some elements to include are:
- When was your child first diagnosed and
- Give an overview of your child’s life
related to the disability in each stage of life. How did it impact
your child at school? Medically? At home? In the community?
- If your child has attempted to work, why
was that attempt unsuccessful or difficult?
- If your child ever participated in, or
sought, specific employment training describe what worked well and what
- Provide a list of cognitive impairments (IW,
auditory processing challenges, etc.) and give examples from daily life.
- Provide a list of behavioral problems and
give examples from daily life.
- Describe your child’s social
interactions. What kind of social life does your child have? How does
PWS make your child more isolated?
- List your child’s daily living activities
(bathing, brushing teeth, getting dressed, and preparing meals) and
explain in detail what difficulties your child has with each. This
includes daily living activities your child is unable to do at all.
- List any medical problems your child has.
- List any psychiatric symptoms your child
- Describe the challenges your child faces
in maintaining weight and managing food intake and food seeking.
- Discuss your child’s future. Do you see
your child being able to work full-time and independently earning enough
money to live in their own apartment with no supervision? If not, share
why this isn’t possible for your child and why Social Security
Supplemental Income and Medicaid are so important to your child’s
We are attaching a sample journal written by one of our parents to give you
an idea of how one parent described their child’s situation. But, there is no
right or wrong way to prepare this journal. The key is to be as honest and
specific as possible. If you would like us to review your journal before you
submit it to Social Security, just let us know. We suggest you submit the
journal attached to your Prader-Willi Syndrome Disability Evaluation form for
A Sample Parent’s Journal
(Note: This parent’s
child was diagnosed later in life. Names and some circumstances have been
changed to protect the identity of the writer and child.)
Name of Child:
Name of Parent: Carla Doe
Social Security Number: 000-00-0000
My daughter is 39 years old. She has experienced difficulties
developmentally, socially, behaviorally, psychologically, and cognitively since
she was born. Throughout her early life doctors posited several theories to
explain her difficulties though a definitive diagnosis was not established until
2002 when a genetic test determined that she had Prader-Willi Syndrome. This is
a rare genetic disorder. The major features include: cognitive impairment,
behavioral disturbance, and a severe excessive eating disorder.
Betty is littered with impairments and disabilities; no single one (except
the excessive eating) would automatically limit her ability to work within the
usual settings. All the various problems taken together present an overwhelming
picture of difficulty in ordinary circumstances. These difficulties have been
present since birth and through Betty’s schooling. Betty’s elementary years
were spent in a private school; the high degree of control and consistency in
this environment provided a reasonable learning experience for her. Her first
year of high school was very difficult and resulted in a placement in a
residential school for two years. Betty returned to her public high school for
her senior year with the support of a dedicated resource person. After high
school, Betty applied for a Threshold Program for girls with developmental
delays. Her application was denied because Betty’s cognitive ability was too
high and her social and interpersonal skills were too poor. Betty entered a
practical nursing program but because of her behavior and manner was quickly
asked to leave the program.
For one year, Betty worked part-time for a local grocer cleaning produce.
When her hours were reduced, she refused to continue the job. Betty had
difficulty coping with co-workers behavior towards her. She also gained
significant weight during this period and it became obvious to me that a grocery
store was not an appropriate place for Betty to spend time without constant
I inquired about possible training for Betty with several agencies. The
story was consistent. Her cognitive functions were too high for programs
designed for the mentally retarded and her social and psychological abilities
were considered too poor to be eligible for educational or vocational training
for the learning disabled.
Betty now helps her cousin with housekeeping and childcare and volunteers at
Sunday school at church.
The following is a list of many, but not all, of Betty’s difficulties. The
list is generated from my experience and many hours of discussion with Betty’s
teachers, psychologists, and doctors. I have included in Betty’s application
all of the documentation I have available.
Betty’s cognitive impairments include:
- Severe auditory processing disability
- Language processing and expression
- A numeric memory of “1”
- Severe difficulties with short-term memory
- Sequential processing deficits (info
intake, processing, and response production problems)
- Rigid thinking; little flexibility without
lots of help
- A borderline IQ
- Balance and coordination are weak
Betty’s behavioral problems include (but are not limited
- Inability to initiate or sustain day to
day personal hygiene without help
- Limited sensibilities of “appropriate
- Little interpersonal ability beyond
“meeting and greeting”
- Has no friends. She likes to be around
people but rarely talks to others.
- Has no sense of time or the ability to
manage a task inside of time expectations.
Betty’s has problems with daily living skills including:
- Can bathe herself but cannot do the task
in less than 2 hours.
- Can wash and dry clothes but takes 2-3
hours to sort 1 load of laundry, wash, dry, fold
- Can sort weekly recyclables but takes
several hours; must do parts in rigid, absolute patterns
- Prepares simple meals (microwavable,
scrambled eggs) but has little order, process from start through
clean-up can take hours.
- Takes diabetic blood tests but cannot
maintain schedule without constant prodding; takes 30 minutes to take
test and document; cannot remember results; cannot establish causal
relationship between blood levels and behavior; requires external
management with minimal success.
Betty has psychological challenges including:
- Deceitful concerning food and diabetic
- Unreliable reporting of eating and taking
- Cannot verbally express feelings
- Acts out
- Angry; cannot tolerate being an object of
scorn, ridicule, accusation; this is a problem in school and work
settings. Her only coping mechanism is to withdraw or freeze.
Betty has an excessive eating disorder. The insatiable
appetite of someone with Prader-Willi Syndrome is due to a genetic defect where
the hypothalamus never receives the message that the person is full. Because of
this defect, a person with Prader-Willi Syndrome requires constant supervision
or they will eat themselves to death. This is a lifelong and life threatening
Betty has had Type II Diabetes for 10 years. Managing her
eating requires constant vigilance and creativity. Her environment must be
designed to keep food from her. If food is available, she cannot concentrate or
focus on anything but the food. She simply cannot manage this by herself.
Betty’s health is deteriorating slowly. Her blood pressure
is borderline. Diabetes management is uneven. There are some ongoing questions
about her heart function and possible gallstones.
Since I was laid off from my job almost three years ago, I
have had the time to better manage and control Betty’s day to day environment.
I have not tried to replace my former position or salary because of Betty’s
needs in this area.
I believe I provide a sub-optimum solution to Betty’s daily
problems. Since the diagnosis of Prader-Willi Syndrome I have come to
understand the needs of my daughter more fully. She and I both agree that it
would be better for her to live within an environment designed to support her
needs. Approval for Social Security Supplemental Income would make this