Date & Time of Visits to Date: 9/17 @ 1730 1900, 9/27 @ 1500 - 1600

Goals: 1. Get to know child & family and build rapport

2. Learn about childs disabilities, development, and care needs
3. Get idea of childs interests and things to do with them
4. Provide relief and free time for the parent
The child I am working with is a 7-year-old female who was born
with a rare, genetic malformation called Aicardi Syndrome. Aicardi
Syndrome is a disorder in which an infant is born with partial or
complete absence of the corpus callosum, epilepsy, and eye
abnormalities typically dealing with the retina. This disease is more
common in females and the severity of it varies person to person.
Some have severe epilepsy and do not survive past childhood, while
others can have only mild symptoms and live into adulthood. My child,
lets call her M.H., has seizures anywhere from 2-10 times a day lasting
1-12 minutes apart, ranging from infantile spasms to catonic drops.
Due to her lack of a corpus callosum, M.H. also has severe
developmental delays. She is still at a 1-year old intelligence level and
is unable to speak words, follow complex demands, feed herself,
control her continence, or do much else for herself. Regardless of her
weaknesses and disabilities, however, M.H. has several strengths.
Since last year she has learned how to walk. Even though she is unable
to speak words to express herself, she expresses herself very strongly
through her eye gazes. She absolutely understands what is going on
around her even if she is unable to interact as well and will let you
know with a giggle if she is a happy or a stern look if she doesnt feel
like doing something.
During the initial visit, we sat down with the mother and learned
more about M.H.s condition, her interests, their family dynamics, what
she was hoping to gain from our time there, and what our own goals
were. We met M.H. and interacted with her for a short period of time
just to familiarize ourselves so that we werent such strangers to her
this semester. She loves toys that make sounds and have buttons to
push so we played on the floor with these toys with her. She is whats
called a sensory seeker so she likes noises, bright lights or shiny
objects, and pressure sensations. The second visit was an afternoon
that they had just returned from church after apparently a long, busy
week. We could tell that M.H.s mom was worn out so we took over
watching M.H. and let her catch up on chores and then rest. You could
tell when we left that she was grateful for our time there to free up her
time. Since M.H. had been out of the house all morning, all she wanted
to do was play with her toys when she first got home so we played with
her on the floor again. After she grew bored, we took her over to the
window and watched the rain outside. It was strange interacting with
someone, who cannot speak back to you. I found myself having to

constantly remind myself that even though she is only staring back at
me she can understand most of what Im saying if I keep it simple.
Overall I felt good about our initial visit and first full on care visit.
Both were more focused on getting to know each other and learning
more about how to best play with and care for M.H. but I feel that I
need to learn more about how to best interact and be comfortable with
her on an expressive level. I would also like to learn more about her
condition and have been researching it as I find it very fascinating and
have never heard of it before now.
The SLOs I feel I have met with between these two visits include
the following:
7. Scholarship
Uses resources to promote learning and seeks out new learning
opportunities.
I have actively been seeking out more information to
better understand
the childs disability and how to best care for her.
6. Ethical and Professional Values
- Respects the child and familys privacy and confidentiality
I do not speak of respite care child or familys case
outside of their home (the care environment) and do not use
patient identifiers when
discussing them for academic purposes.
-

Follows JMU and agency dress code.

I have followed the dress code indicated for respite
care in that I am professionally but comfortably
dressed with closed toed shoes, no revealing clothing,
no excessive jewelry, etc.

Punctual
I have maintained and arrived on time to every respite
care visit.

4. Communication
Communicates and listens effectively to family and child,
incorporating
developmental considerations and diverse needs
At the initial respite care visit I spent time to get to know
the family,
their dynamics, and about their needs as well as the
childs.
3. Therapeutic Relationships

Provides developmentally appropriate play, communication, and

diversional
activities to children.
I understand the developmental levels of my respite care
child and play
with her based on her level of understanding and
attention.
Plans/Future Goals:
1. Learn more about Aicardi Syndrome
2. How to best interact with child with this syndrome, specifically
this child
3. Continue to provide relief and a break for the parents