Carlena Lowell

SEI 513 Case Study

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Case Study
Carlena Lowell
SEI 513
Spring 2014












Carlena Lowell
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*All names have been changed in order to maintain confidentiality.
Child and Family Background
Tim is a 33 month old boy who lives with his mother, Sarah; father, Will; and 7-
year-old sister, Emily. Tim was referred to Child Development Services in early April
2012 by the Maine Childrens Cancer Program due to concerns with his motor
development and feeding. Sarahs pregnancy with Tim was complicated by a maternal
appendectomy. Tim was delivered on time via a scheduled cesarean section.
Tim received shots at his two month check-up. Within a couple of days, his legs
swelled, he stopped eating, he had projectile vomiting, and he began to lose weight. As
a result, Sarah and Will took him to the emergency room. He was admitted to the
hospital and diagnosed with failure to thrive. At about four months of age, he developed
nystagmus in one of his eyes, and was admitted to Maine Medical Center where a MRI
was completed. The results of the MRI showed a tumor on his optic nerve; he was
diagnosed with pilomyxoid astrocytoma (PMA). PMA is a type of pediatric cancer
causing tumors to grow in the brain, particularly on the optic nerves, and on the spine.
At the time of the CDS evaluation, Tim had eleven tumors on his brain and spine. He
had undergone surgery 13 times, one of which included the placement of a shunt.
When referred to CDS, Tim had already begun receiving weekly chemotherapy, and
continues to receive it today. He takes several medications to counter nausea and acid
reflux including Zofran, Ativan, Miralax as needed, and Ranitidine. He receives daily G-
CSF (granulocyte-colony stimulating factor) shots while in chemotherapy. Since his
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diagnosis he has had a gastrostomy-jejunostomy tube (G-J tube) for continuous
feeding.
Tim was recently diagnosed as blind from an ophthalmologist; shortly thereafter,
the family began working with a Teacher of Blind and Visually Impaired Children (TVI),
Mary, from Catholic Charities of Maine, as well as an Orientation and Mobility Instructor
(OMI), Leah, from the Division for the Blind and Visually Impaired. Tim also continues
to receive CDS Part C services, and was recently found eligible for Part B services.
The familys primary service provider (PSP), a Physical Therapist (PT), has remained
the same since the beginning of services. The plan also includes consultation visits
from the Occupational Therapist (OTR/L) and the Speech Language Pathologist (SLP)
on the team. The family finds support from both Sarahs and Wills parents and Sarahs
sister incredibly helpful.
Initial Child Status/Functioning
CDS Evaluation
Tim was evaluated by CDS in late April 2012. The Battelle Developmental
Inventory-II was administered, and the multidisciplinary team consisted of a SLP and
OTR/L. The following results reflect the original scores from this evaluation; however,
the strengths and needs were obtained more recently through interview with the parents
and the PSP.
Adaptive. Tims developmental quotient for this area was 65, which is 2.33
standard deviations below the norm. The percentile rank was 1.
Strengths. Tim will push his arms through openings in shirts once the shirt is
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over his head. He uses a G-J tube for continuous feeding.
Needs. Tim has a G-J tube and is not currently eating or drinking.
Social Emotional. Tims developmental quotient for this area was 95, which is
.33 standard deviations below the norm. The percentile rank was 37.
Strengths. Tim demonstrates curiosity at a novel toy. He displays definite
preferences and enjoys physical play. He smiles in response to a verbal or physical cue
and laughs when tickled. He is able to make his wants known, primarily through
vocalizations and gestures. He is able to identify certain people by their voices; he
seeks Sarah out by continually saying mama to identify where in the room she is.
Needs. Tim does not currently interact with same aged peers.
Communication. Tims developmental quotient for this area was 67, which is
2.20 standard deviations below the norm. The percentile rank was 1.
Strengths. Tim localizes to sound and vocalizes recognition of familiar people.
He responds to auditory games and vocalizes in response to music. He understands
no. He signals adults to gain an object. He is able to make intentional requests to
adults. He is able to say mama, dada, nana, yaya (Papa), and hi, as well as
several other words. He also makes a sound for truck and waves bye.
Needs. Tim does not yet give or show toys or imitate simple play with an object.
He does not yet follow one step directions. He does not yet request food or drink, but
because of the G-J tube he is not ever hungry. He does not yet name five familiar
objects.
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Physical. Tims developmental quotient for this area was 79, which is 1.73
standard deviations below the norm. The percentile rank was 8.
Strengths. Tim is now walking! He is able to navigate his environment with the
use of a push toy, and is able to walk between a piece of furniture and a person for
about five feet. He attempts to retrieve toys through physical touch. He is able to pull
himself from seated to standing position. He is able to transfer objects from hand to
hand. He will signal he wants to be picked up by putting his arms in the air.
Needs. Tim does not yet hand toys back on request. He does not yet navigate
stairs.
Cognitive. Tims developmental quotient for this area was 58, which is 2.80
standard deviations below the norm. The percentile rank was less than one.
Strengths. Tim preforms continuous action with toys and attempts to restart
actions by movement. He shakes and bangs toys. He is beginning to navigate puzzle
type toys, as well as dual (Braille-picture) books. He is able to push some buttons on
toys to activate them. He is able to identify more than five body parts.
Needs. Tim is not yet understand basic prepositional concept.
Ophthalmologist Examination
On October 4, 2013 Tim had an examination with an ophthalmologist. The
report stated, On examination, the patient had no ability to fix and follow with either
eye. Pupils were 4 mm and did not appear to be reactive on either side. Anterior
segment examination was unremarkable. A fundus exam showed significantly pale
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optic nerves bilaterally. This patient has a history of a brain tumor that has left him
blind. The optic nerves are significantly pale and atrophic.
Initial Needs Assessment from the TVI
The initial referral visit and needs assessment was completed by Mary in
December 2013. The following are excerpts from Marys report:
[Tim] has the benefit of a very supportive family, an older sister, and a dog
(which provides surprise contacts and jostling as well as different tactile experiences).
His parents report [Tim] touches many things but does not like cold things (like frosty
windows) or the Christmas tree. He has various push toys which he uses to go all over
the house (he is walking). When he gets stuck he says stuck, then moves around the
obstacle. Wonderful! He reportedly likes toys, especially noisy ones.
In observing [Tim] (who was a bit over-tired), it is obvious that he has some
good receptive skills and emerging verbal skills. He said hi and his family members
names appropriately. He was curious about the stranger (me) and came close to listen
to my voice and recoiled a bit at the touch of my hand in his as an unfamiliar one. He
then said hi in response to my greeting. [Tim] used his hands and feet (bare) to
explore things in his path. At one point he got his trailing tube line wrapped around his
ankles and neatly stepped out of the loop in order to continue cruising.
When I asked if they had any questions yet for me, [Sarah] asked if [Tim] might
be able to attend public school. I have every expectation that he will do so, certainly
that is the usual nature of my jobto make it possible for him to be successfully
educated in his home school.
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Maine, along with several other states throughout the country, has implemented
a service determination rating scale for each child referred to ESBVIC. The scale helps
to ascertain what type and how much service will be provided by the ESBVIC program.
It is scored in points and ranges from 0-16 points with 0-1 point not requiring any
service. [Tims] service determination rating is a total of 16 points.
Orientation and Mobility Initial Assessment
The initial assessment was completed by Leah in January 2014. The following
are excerpts from Leahs report:
[Tim] is a very affectionate two year old boy. He loves to be held and to know
who is in the room with him. He cruises around rooms and explores his environment.
He recently began to walk through open space unaided. He does so tentatively and is
most motivated to do so when walking towards the voice of a family member. I
observed him walking about five feet in a straight line through open space to his mother.
He has a variety of push toys that he has been using to walk through open
space. He prefers the heavier, sturdier ones. His family expressed interest in him
having a device that would be less cumbersome for him to use so that he could
negotiate out of corners with greater ease. On 2/20 I loaned them an adaptive mobility
device called The Pusher. It is a simple rectangular device made from PVC pipe that
can be used to feel the ground/floor and protect the user from colliding into obstacles.
When I introduced the device to [Tim] he did not tolerate walking with it. His mother
reports that she regularly exposes him to it with the hope that he will eventually want to
use it as a mobility device. I will continue to work with them on using this and other
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mobility devices. On 3/14 I brought to his home a Melissa and Doug metal shopping
cart. [Tim] immediately reached for the red handle and pushed it. This toy shopping
cart is a sturdy mobility device with front wheels that move like a regular shopping so
that it can be turned easily to get around obstacles. He can also use it to transport
objects around the house. His mother reports that he knows his way around their house
and knows how to locate familiar objects. However, [Tim] sometimes lacks motivation
to get up and look for objects that are out of reach and not in a familiar location. For
example, if a toy he is playing with rolls or is tossed out of reach he does not usually try
to search for it.
[Tim] can touch the following major body parts on his body on request: mouth,
nose, ear, eye, head, leg, foot, knee, hair, and bottom. He also will perform some
actions on request such as clap hands, jump, dance, and sit down. He can open, go
through, and close doors on his own. He can climb on and off furniture at home. He
can walk up and down steps holding onto someones hand.
It is not clear to this instructor how much residual vision or light perception [Tim]
may have. Recently it has been noted by his family that his pupils dilate in response to
light and he has appeared to be bothered by bright sunshine. When I turned on a
flashlight in a dark closet, [Tim] turned in the direction of the light. He also reached out
to touch an illuminated object that was near him but not touching him. On other
occasions I have observed him reach out and touch other objects that were not making
any sound. His Nana says that it appears he makes eye contact with her when she
holds him.

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Family Concerns, Priorities, Needs, and Resources
The family is concerned about Tims ability to eat. At this point, Tims oral
feeding is their number one priority to work toward. Tim currently wears his G-J tube
22-23 hours a day. Within the last six months, Tims doctor from the Maine Childrens
Cancer Program suggested trying to wean down the amount of time Tim had his G-J
tube in. The family tried this for a few months. Prior to beginning this, Tim was
receiving less than 100 ml of food per hour. The plan was to increase the amount of
food per hour, and decrease the amount of time he required the G-J tube. The ultimate
goal was 150 ml per hour for 12 hours per night.
About two months ago, the food intake was around 130 ml per hour for about 16
hours. Tim began getting nauseous at night, to the point of vomiting every night. Sarah
and Will decided to decrease his food intake back down to around 115 ml per hour and
increase the hours again. Once they did that, the nightly nausea subsided. This was
discussed during a team meeting at the end of March. Sarah and Will planned to talk to
Tims doctor the following Tuesday during his chemotherapy session.
In addition, there is a plan in place for CDSs OTR/L to do a consultation visit to
discuss oral feeding. When Tim does attempt to eat or drink orally, he experiences
much difficulty with swallowing. In the past, Sarah and Will would give him a bite or sip
of something, and then put his pacifier in his mouth for him to be able to swallow. There
is also question of how much Tims chemotherapy drugs affect his sense of taste, and
how motivated one is to eat if ones sense of taste is negatively skewed due to drugs. If
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the scope of Tims feeding issues is beyond our OTR/Ls expertise, we plan to make a
referral to a feeding specialist in the area.
At this point the family prefers to have services take place in the home, given
Tims weakened immune system. This has fit nicely with the Part C approach to early
intervention services, as is a home-based approach. The TVI and OMI also work in the
home. We recently met for Tims transition from Part C to Part B conference. Prior to
meeting, the Part B transition coordinator met with our site directors and determined
that Tim was automatically eligible for Part B services under Multiple Disabilities, and
did not need to have further evaluations done unless Sarah and Will wanted to. Also,
they determined that for Tims first year of Part B, services could continue to take place
in the home, given his medical fragility. At the meeting we did discuss Tims attendance
of a Pre-K program once he turns four-years-old. Sarah and Will agreed that would be
something they want to look into (this had been a question the TVI was asked about at
their initial assessment). Sarah expressed concern with Tims severe attachment to
her; he has never been away from her, and shows great anxiety when he is not near
her. Sarah seemed a bit regretful of this, we reassured her she did what she needed to
do in Tims first few years of life, which was be with him all the time.
The family has a large support system that includes Wills mother and two
siblings. Sarah works at a hair salon owned by Wills family; Tim goes to the salon with
her on the days she works. Tim is covered by Maine Care. The family also receives a
great deal of professional supports including, the Maine Childrens Cancer Program,
Maine Medical Center, the ophthalmologist, the Division for the Blind and Visually
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Impaired, Catholic Charities of Maine, and CDS. They have also found the community
they live in to be of great support during difficult times in the past few years.
Goals for Intervention
Tim and his family are working toward outcomes and goals from CDS, the TVI,
and the OMI. Over the years, Tim has met multiple CDS outcomes; the following are
the current outcomes. In addition to these outcomes, all of Marys and Leahs goals
were rewritten in Part C language and added to the IFSP.
The CDS Outcomes
1. At mealtimes Tim will take food off the spoon with his mouth and swallow without
needing the pacifier so that he can get off the feeding tube.
2. When offered a sippy cup Tim will take it and put it in his mouth so that he gets
used to it and will eventually drink from it.
3. During playtime at the hair salon and when going outside at home, Tim will walk
down at least two stairs with assistance from a caregivers hand and a railing or
wall so that he can learn to navigate stairs (independently crawling up and down
stairs is on the PTs Plan of Care).
The TVIs Goal
1. Given dual picture books (Braille/Print with tactile illustrations), Tim will tactually
interact with the illustrations and Braille dots while being read to by family
members and service providers for at least 3 minutes during at least 10 reading
sessions as observed by family members and service providers by June 2014.
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2. Given dual books, Tim will turn at least one page successfully when asked to do
so during at least 10 reading sessions as observed by family members and
service providers by June 2014.
3. Given texture blocks/puzzles, Tim will match at least one block to its location with
only verbal cues three times by June 2014, as observed by family members and
service providers.
4. Given three familiar dual books, Tim will explore them and select a preferred
book to be read to him in at least three trials by June 2014, as observed by family
members and service providers.
5. Given two common objects to manipulate, Tim will select the named object in 3
of 5 trials by June 2014 as observed by family members and service providers.
6. When presented with a new or less familiar tactile experience (play dough,
whipped cream, sand paper, mud, etc.), Tim will touch it with minimal prompting,
at first with hand under hand support, and later without, on at least 5 occasions
by June 2014 as observed by family members and service providers.
7. Given a familiar dual book, Tim will locate the named illustration (e.g. the balloon)
correctly 5 times by June 2014 as observed by family members and service
providers.
The OMIs Goal
1. Tim will search for and find desired objects with minimal assistance in 3 out of 5
trials.

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Intervention Process
Tim and his family have been involved with CDS Part C services for 22 months.
During that time, the PSP has employed the coaching model to their early intervention
services. She has worked closely with the entire Part C team to provide the family with
the possible support. Over the course of the familys time with CDS, they have received
consultation visit services from the OTR/L, as well as the SLP on the team. The entire
early intervention team also meets to discuss Tims progress every three months. The
family has also received service coordination services through CDS the entire time.
The Part C service coordinator was involved in referring the family to Catholic Charities
of Maine last November.
Once the referral was made and the TVI completed the initial assessment, she
made a referral to the OMI from the Division for the Blind and Visually Impaired.
Currently in addition to CDS services, the family receives in home support from both of
these professionals. The TVI and OMI have both participated in joint visits with the
CDS primary service provider, and plan to continue doing so on a fairly regular basis.
This works well for all the providers involved as each is able to see how the other works
with the Tim and his family, and may be able to use ideas in subsequent solo visits.
We now meet as an entire team which includes Tims parents, CDS service
coordinator and primary service provider, the OT and SLP if available, the TVI, the OMI,
and now Part B service coordinator. Therefore, we can all hear progress from each
member of the team, including the parents, and recommendations each might have.
When using an approach such as this, the child and the family benefit to the greatest
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extent possible. When everyone is working on the same things at the same time with
different professional prospectives, much progress stands to be gained.
Tim has met a variety of outcomes throughout the last 22 months with CDS.
These include:
Tim will play on his tummy.
Tim will sit in his bumbo chair to be fed.
While on the floor, Tim will move to his toys.
Tim will spend less time with his binky.
During playtime Tim will pull himself up to play with toys on the couch or table so
that he can play with toys in different locations when he wants to.
When Tim is laying on the floor and wants to sit up to play he will sit up on his
own without hooking his feet under something so that he does not get frustrated
and cry.
Tim will nod or say yes when mom asks if he is hungry or he wants his binky
so that people who dont know him well will know what he wants.
When at work with mom, Tim will walk to get his toys so that someone does not
have to carry him.
During playtime with his sister, Tim will say a word for his sister so that he can
get her attention.
Tim will participate in playtime by making a choice of what he wants to play with
when given a choice of two items so that he can use new toys and explore more
toys.
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Sarah and Will will have a visit in place with Catholic Charities of Maine by
January 9, 2014.
There were also several other outcomes that were not met or needed modifications due
to Tims fluctuating bouts of sickness over the last 22 months. The outcomes listed
above were met through the work of the early intervention team, specifically the PT, OT,
and SLP. The average time it took for them to be met was approximately six months.
Some took more trial and error of strategies, whereas some were met using only
minimal strategies.
Intervention has been had in the past regarding Tims oral feeding abilities.
Methods that were developed are either no longer working or no longer applicable; for
example, using a bottle and using a pacifier to aid in swallowing. As Tims eating is now
on the top of the familys priority list, the PT plans to have a consultation visit with the
OTR/L in the near future to assess Tims oral feeding abilities. As mentioned before, if
his needs extend the scope of the OTR/Ls expertise, a referral will be made to an
outside feeding expert to join the team.
Recommendations for Addressing Continuing/Future Needs
Recommendations for addressing continuing and future needs have been made
by CDS, the TVI, the OMI, and Tims ophthalmologist. Undoubtedly, there are
recommendations (and goals for intervention) made by Tims doctors at the Maine
Childrens Cancer Program; however, CDS is not made privy to them except through
parent report.

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CDS Recommendations
Continue with Part C services at 48 visits over 6 months (1 hour visits twice per
week from a PT, with 6, 60 minute consultation visits with the OTR/L and 3, 60
minute consultation visits from the SLP) until he turns three.
Part B services will begin immediately in July when Tim turns three, as Extended
School Year services were written into the plan.
He will receive Speech Therapy, Occupational Therapy, Physical Therapy, and
Specially Designed Instruction for one hour per week in the home.
It is recommended a Pre-K classroom be looked into for when he turns four years
old.
Continue to work with the family around Tims oral feeding abilities; refer to an
outside feeding specialist if need be.
The TVIs Recommendations
I am recommending 2 hours per month of service/consultation for [Tim]. This
service time is contingent upon caseload assignment and could change due to
emerging caseload considerations at which time the ESBVIC supervisor may
redistribute TVI caseloads. I recommend that the services (direct and
consultation) be provided for 1 hour 2x/month. (These services may be provided
at moms work, at home, and sometimes in conjunction with other service
providers such as the PT or O&M instructor.)
I will refer [Tim] to the Orientation and Mobility Instructor from the Division for the
Blind and Visually Impaired who serves this region (Leah) to determine any
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needs in that area and to provide related services if needed. (This was explained
to the family.)
I need to be invited to CDS service meetings (IEPs) and that my services and
goals be included in [Tims] plan. (See proposed goals.)
I expect that other team members will feel free to contact me regarding
adaptations and accommodations appropriate for [Tim] due to his visual
impairment.
The OMIs Recommendations
I am recommending at least 2 hours per month of service/consultation by an
Orientation & Mobility Instructor. I should be invited to the IFSP/IEP meetings.
Involve [Tim] in household chores. Participation in chores can help him with
concept development, fine motor skills, gross motor skills, language skills, and
orientation and mobility skills. The PATTER (Preschool Attainment Through
Typical Everyday Routines) Guide Book from the American Printing House for
the Blind is an excellent resource to help facilitate the use of task analysis to
involve children with visual impairments in typical household routines.
Continue to trial adaptive mobility devices that will enable [Tim] to explore his
environment safely and confidently.
Continue to increase his understanding of body parts and spatial concepts.
If [Tim] shows signs of being bothered by bright sunshine he may benefit from
the use of sunglasses when outside or riding in the car.

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The Ophthalmologists Recommendations
I will see him again in one year.