Name: Rose McAuliffe
Date of Birth: 2-26-99
Parents: Cheryl and Chris McAuliffe
Chronological Age: 13 1/2 months
Date of Assessment: 4-13-00
Rose was referred to the Stepping Stones Birth to Three
program at four days of age by her mother. Developmental services were requested
as Rose is determined to be developmentally at risk for delays due to her
diagnosis of Down Syndrome.
The following information was obtained from Mr. and Mrs.
McAuliffe and from medical reports received by Stepping Stones. Mrs. McAuliffe
reports having a relatively healthy pregnancy. An amniocentesis done in
September 1998 diagnosed the baby with Down Syndrome. Subsequent echocardiograms
also diagnosed her with having an endocardial cushion defect and a large AV
canal for which surgical repair would be required. The family was placed in
contact with the Genetics Clinic at UCONN (Sally Rosengren, MD) and also with
the pediatric cardiology group at CCMC (Drs. Leopold. Ellison and Diana). Rose
was born at full-term at UCONN Health Center via a C-section delivery secondary
to footling breech positioning. She weighed 3640 grams and her APGAR scores were
3 at one minute and 8 at five minutes. Neonatal complications included acute
respiratory distress and significant GE reflux. Rose was found to have a
duodenal web which resulted in the need for a duodenostomy and placement of a
0-tube. When Rose was finally discharged home at 28 days she was receiving
primarily G-tube feedings. On 6-14-99, Rose underwent surgical repair of the AV
canal. The surgery was complicated by pulmonary hypertension requiring ECMO in
the PICU. Although the initial prognosis following removal from the ECMO was
poor, Rose rallied and did well, being discharged home from CCMC on 7-2-99.
Rose has continued to do remarkably well physically and
developmentally. She now weighs approximately 16 1/2 lbs and is taking primarily
oral feeds. With the exception of having bronchitis in February, Rose has stayed
relatively healthy. Primary pediatric care is provided by Dr. M. Levine who is
also monitoring Rose's weight gain.
Toward the end of July 1999, Rose had her cardiac follow-up
appointment. It was noted that the repair looked good, however, there was some
residual mitral insufficiency which did not require intervention at the time. On
1-19-00, Rose was seen by Dr. Bob Greenstein, geneticist. He felt that she was
doing well and recommended a follow-up just before Rose's third birthday and
prior to her entering a preschool program. He also recommended an audiological
assessment which as done at CCMC on 2-25-00. At that time Rose had fluid in her
ears which reportedly effected her tympanograms. It was recommended that she
return for a re-assessment after her ears were clear. This appointment has not
yet been scheduled.
Rose receives weekly early intervention services to address
all areas of her development from Karen Rusling-Tiemann, physical therapist from
Stepping Stones. She also is seen every three months by speech and language
therapist and clinical dietician on an as-needed basis. Speech and language
therapy/oral motor and feeding will be increased.
Rose has done so well in great part due to the wonderful, loving and appropriately stimulating environment of her home which she shares with her parents and two older sisters, Erin and Katie.
ASSESSMENT PROCESS:
This assessment was completed in the family's home with
Rose and her mother present. Members of the assessment team included Mrs.
McAuliffe and Karen Rusling-Tiemann (physical therapist) and (speech
pathologist) from the Stepping Stones Birth to Three Program.
The evaluation was completed in English. The Battelle
Developmental Inventory (BDI), parent report, home visit notes and clinical
observation were used to complete the developmental portion of the evaluation.
Personal-Social Domain:
Rose is typically a very happy, social baby. She greets
familiar people, especially her immediate family members, with big smiles,
vocalizations, and waving "Hi". She enjoys physical and social games
and is beginning to actively participate in peek-a-boo. Rose will engage others
using eye contact, touch and vocalizations ("yelling" to get
attention). She will also reach out and explore facial features of familiar
people. Rose has demonstrated some stranger anxiety in the past couple of
months, however, this does not seem to presently be an issue for her. She is
very visually vigilant of her mother's whereabouts and will turn and look for
her when she leaves the room. Rose also looks toward and reaches out for her
parents for comfort. Rose recognizes her name when called. When given a mirror,
Rose will wave at and kiss her mirror image.
The quality of many of Rose's movements as well as her
overall acquisition of motor skills is directly influenced by her generalized
decreased muscle tone and decreased proximal stability. Rose has been, until
recently, very resistant to being placed on her stomach. She now has "found
mobility" and will purposefully roll around to obtain a desired toy or to
get near a favorite person. She will tolerate being on her stomach for longer
periods of time and can now reach for an object in this position (prone on
forearms) demonstrating emerging weight shift. Rose will briefly maintain a
hands and knees position (quadruped) when placed. She now sits independently
with her trunk erect and her hands free to play while demonstrating emerging
balance. Her protective responses are also just emerging to the front and to the
sides when in sitting. Rose will move from independent sitting to being on her
stomach using a " slow, controlled fall" to the sides or move forward
through her straddled legs. For the past couple of months, Rose has been placed
in supported standing on a very slow moving treadmill using a protocol
established by D. Ulrich at the University of Michigan. In their studies, the
use of the treadmill in this way has been shown to facilitate onset of walking
skills in infants with Down Syndrome. Rose has shown significant improvement in
extending her legs and bearing weight on her feet in supported standing. She
will now stand with support placed at her upper trunk and take beginning steps
with facilitation.
Rose reaches directly and purposefully for a desired object
with both hands. She uses an immature raking grasp bilaterally (using fingers to
pull the object into the palm of her hand) to pick up small objects such as a
Cheerio. Complete thumb opposition is noted when picking up larger objects. Rose
uses an assistive release when letting go of objects in her hands (ie.
throwing). She is able to remove rings from a stacking post independently and
take objects out of a container. Rose will hold an object in each hand and bang
them together. Better hand use is noted when she is positioned with increased
proximal support (ie. Rifton chair with a tray).
Communication
Receptive Language: Rose is a very attentive baby
who is focused on the sounds, and especially the voices, in her environment. She
is a baby who listens. She responds to different tones of a person's voice. When
her mother asks in a questioning tone "who's home?" , Rose looks
excitedly toward the door where she expects a family member to enter. She
associates words with familiar actions, such as time to eat or time to take a
bath. Soon she will. look towards each one when named s a beginning step to
identify them by name. Rose also enjoys looking at picture books and having her
family name items in the books.
Expressive: Rose is a vocal baby. She will yell out
for attention and she has a wide range of sounds for various emotional states.
She is babbling in long strings of consonant and vowel combinations including
the following sounds: d, g ,w, h, y, b, p and m. Rose enjoys experimenting with
changes in pitch and volume of her voice. She uses some gestures as well to get
her needs met. Rose will lift her arms up when asking to get picked up. She will
push away what she does not want. She also shakes her head "no" and is
beginning to get "yes" although she is not using these appropriately
at this time. She does wave her hand appropriately for "hi" and
"bye" often with the verbal prompting. Rose enjoys games of reciprocal
sound play. She is imitating motor movements readily and watches a speaker's
mouth carefully in what looks like an attempt to imitate sounds. These
observations lead one to believe that Rose might begin to imitate new sounds
soon.
Rose explores her environment visually and she shows
interest in new objects and surroundings. She rolls to get to a new or preferred
toy. She feels and explores objects carefully. Rose likes to take objects out of
containers and watch them fall. She activates the pieces on her activity table
with enthusiasm. Rose has recently begun to activate many different types of
cause and effect toys. She will pull a string to obtain a toy and reach around a
see-thru barrier to get the toy on the other side. This demonstrates that she is
using beginning problem solving skills. Rose will look for a removed toy
indicating the she remembers the toy when it is out of her sight (visual
memory/object permanence).
Attention: Rose is very attentive to people, objects
and activity in her environment. She uses her eyes together to visually track an
object as it is moved in a vertical, horizontal, circular or diagonal path. She
is primarily interested in social interactions, however, Rose is beginning to
spend longer time with toys and books when an adult or older sister is playing
with her.
Self-care skills: Rose is eating a variety of baby,
foods and some first finger foods. Her family has been given sensory and oral
motor suggestions to assist in her oral motor and feeding development which
appear to be helpful. Rose will open her mouth in anticipation of the spoon and
she is now starting to use her lips to remove food from the spoon. She will hold
onto a cracker or cookie and bring it to her mouth. Rose now drinks from a
bottle demonstrating complete lip closure and a strong suck. A small cup
(medicine cup) with thickened liquids has been introduced. With jaw control, she
is doing relatively well drinking small amounts of liquids at a time from the
cup. Reportedly, Rose will pull her shoes and socks off.
Summary and Recommendations
Rose is a very happy, social 13 1/2 month old baby with a
diagnosis of Down Syndrome. She has made remarkable developmental progress in
the past several months following surgical repair of a heart defect last June
when she was four months of age. There were severe complications during the
surgery, however her recovery was remarkable and the repair was determined to be
a success. Rose has remained relatively healthy since her discharge home from
the hospital following the surgery. Rose receives wonderful stimulation from her
very loving and attentive family. Rose's strengths are in her social and
communication abilities. She uses a variety of vocalizations, facial expressions
and gestures to communicate. Generalized decreased muscle tone and proximal
instability have hampered Rose's gross and fine motor abilities, however, she
appears to have had a "spurt" and is she now independently mobile
through rolling and transitioning out of independent sitting. With her parents'
persistence and patience, Rose is now receiving almost all of her nutrition via
oral feedings (baby foods from a spoon/ some baby finger foods and liquids from
a bottle and from a small cup). It is anticipated that she will be off of her
G-tube feedings within the next month or so.
It is recommended that Rose continue to receive early
intervention services which use a transdisciplinary approach to best address all
areas of her development. In the upcoming year emphasis will continue to be on
Rose's motor development, expressive and receptive communication skills and her
oral motor/feeding skills
Any questions regarding this report may be directed to the
evaluators at the Stepping Stones Birth to Three Program at 278-1100 ext. 281.
Karen Rusling-Tiemann, RPT
MA CCC/SLP
Physical Therapist
Speech and Language Pathologist