Together Time – Port Discovery Children’s Museum: A pilot program

Program Description:  Together Time and Port Discovery Children’s Museum collaborative pilot program provided a support group for mothers and their young children with developmental disabilities. Together Time at Port Discovery is a 5 week program designed to promote positive parent-child attachment and to enhance each mother’s self-sufficiency in caring for her child. The pilot group addressed skill building in the context of everyday activities such as mealtimes, bedtime routines, playtime, etc., by utilizing Port Discovery’s innovative environment and unique play-to-learn exhibits designed for early learners of all abilities.

Target Population:  Baltimore City mothers and their children ages 2-4 with developmental disabilities. Families were recruited from a Kennedy Krieger home and center based developmental therapy program. All of the families were receiving Medical Assistance.

 Program Objectives & Components:

  • Through hands-on engagement, improve mother-child attachment, and increase mothers’ confidence in their ability to help their children with developmental disabilities build necessary skills.
    • Together Time/Port Discovery staff will used the Museum’s unique exhibits to provide mothers with development-enhancing techniques through five participatory group sessions themed around everyday activities.
    • By helping mothers feel more skilled and informed, Together Time at Port Discovery aimed to build  their comfort levels with parenting and also strengthen their parent-child relationships.
      • Enrich the community support network for mothers of children with developmental disabilities.
    • Port Discovery staff was trained in the Together Time at Port Discovery curriculum, and will receive valuable hands-on experience under the guidance and supervision of PACT’s experienced occupational therapist, who developed the Together Time program.
    • Throughout the 5-week program, Together Time’s therapist and Port Discovery staff aimed to help develop social support and a communal environment among participating mothers so they will feel less isolated and more engaged in their community.

Unique components of this administration of the Together Time program included a modified administration of the Mother Goose on the Loose program. 

Mother Goose on the Loose is a fun-filled thirty minute interactive early-literacy program for children from birth to age 3 with their parents or caregivers. Created by Mother Goose on the Loose Executive Director Dr. Betsy Diamant-Cohen, this innovative program is based on research which shows that children learn best through routine and repetition in a nurturing environment. Mother Goose on the Loose uses a variety of activities, such as rhymes, songs, puppets and instruments to foster speech development, motor coordination, self-confidence, and sensitivity to others. For more information on Mother Goose on the Loose, please visit http://www.mgol.net/

Implementing Togther Time with children with special needs

 The revised Together Time program was piloted with families from new target populations who face challenges including domestic violence, poverty and parenting children with disabilities.

Families from a variety of backgrounds were recruited to participate in the pilot group that used the revised Together Time Curriculum.  All of the families in this new pilot group were living in poverty and two of the families were homeless. Two mothers, also, had intellectual disabilities (one had suffered a brain injury and the other had mild mental retardation). All families included in this group had a child diagnosed with a developmental disability who was receiving occupational therapy services prior to beginning the group sessions.  Some of the diagnoses of the children in the group included spina bifida, dwarfism, feeding disorders and cerebral palsy.  While the majority of the caregivers who participated were mothers, two fathers and one grandmother also attended the group sessions.

While the pilot group and individual sessions were implemented by licensed occupational therapists, the Together Time curriculum has been developed to allow facilitators from any background to implement the program. The parents and children who participated in this new pilot group participated in 10 group sessions on topics related to bedtime, grooming, meal time, dressing and play time. Caregivers completed Pre and Post Test Questionnaires (completed at session 1 and session 10), and filled out a Family Goals Record Form (completed at session 1 and session 10)

 

Family Goals Record Form Results

On the Family Goals record form, Parents were asked to identify activities of daily living they would like to work on to improve their skills in caring for their child over the 10 sessions. Performance and interaction skills chosen by group participants included:

“I want my child to want to play with me”

“I want my child to have a bedtime routine”

“I want my child to be able to put on his own shirt”

“I want to know more about what my child should be doing at his age.”

At the end of the Together Time program, many parents reported they saw a positive change in their children’s’ ability to more independently perform skills they identified as important as well as a greater feeling of satisfaction in their child’s performance of these skills. These changes indicate families were growing and developing skills in areas they identified as meaningful and useful to their individual needs.

 Pre and Post Test Questionnaires

Families that participated in the new pilot group were asked to provide feedback on the program at the conclusion of 10 group sessions. On the Pre and Post Test questionnaires, parents showed a variety of positive outcomes. One caregiver shared, “the thing I liked best about the Together Time group [was] meeting people and [child’s name] can play with other kids.” Parents reported that Together Time allowed them to learn skills about parenting and discover new things about their children. One mother shared, “I learned he likes different foods,” and commented that her child also learned new skills in the groups such as “he plays more and helps do more with dressing.” A second mother reported “I learned songs and great parenting skills.” A third mother stated that she found the group a valuable resource because she “learned to let [her child] be independent.’

Parents who participated in pre and post group interviews reported having more frequent interactions with other parents. One mother, who stated she “never” spoke with other parents prior to participating in Together Time, reported that following the group she felt she more comfortable talking with other mothers. This change is considerable since we know that parents of children with disabilities often experience isolation and the impact of isolation on mothers and children can be devastating to healthy growth and development as well as their quality of life.

Lessons Learned

The information gathered from this project and the assessment and evaluation tools employed showed that:

  • Together Time group sessions help families feel less isolated and build positive interactions, leading to healthier growth and development.
  • The group sessions promote a supportive and social environment for parents to share feelings and new ideas. Participating in the group helps foster socialization skills among both the parents and their children.
  • Parents genuinely enjoyed participating “as a group” and felt connected to one another.
  • The “meal time” lesson activities were very popular in the group setting and many parents talked about foods their children like and offered suggestions and new ideas to their peers.
  • The “dress-up” play lessons were the most popular home activity.
  • Parents enjoyed having designated times and activities to play and interact with their children.
  • Blankets donated by Project Linus were very useful in many of the home and group activities.  Parents were excited and grateful to be able to keep the blankets, as well as other program materials.
  • Transportation is a major barrier for these families.  Families, who participated in group sessions, were provided taxi cab transportation since they would not otherwise have been able to access the program.
  • Transportation is a major barrier for these families in all aspects of their lives – in general they do not leave home often due to a lack of both public and private transportation.
  • During the times before and after group sessions (while waiting for their cabs) parents socialized and offered advice and support to each other.

Together Time- Growing Together: A collaborative project with a supportive parenting program

Together Time was adapted to be a complementary component to PACT’s successful Growing Together program, the only supported parenting program in Maryland for parents and caregivers who are intellectually disabled and have children under age three.  Together Time enhanced Growing Together by teaching specific parenting skills and fostering healthy relationships through 10 weeks of center-based groups and home-based teaching sessions. 

Adaptations to the Together Time program included:

  • Handouts formated for parents with reduced literacy skills
  • Handouts and activities to be used in a 1:1 home based session with therapist and parent-child dyad for practice and transition of skills in a real life context.
  • Inclusion of additional assessments of parent skills including the Allen Cognitive Level Screen; NCAST

Project Results

The parent group consisted of seven mothers (the primary caregivers in all the families) ranging in age from 22-35.  All participants were African-American mothers.  Their intellectual disability diagnoses included learning disabilities and mild-moderate cognitive impairment (two of the families also had mental health issues).  Their children were between the ages of one and three.  One child was typically-developing, four required therapy services to address their developmental needs (speech, occupational or physical therapy) and one child was receiving behavior management services.  Each parent-child received 10 hour-long Group Sessions that met weekly to introduce relationship building activities through daily routines, five Home Visits that reinforced the Group Sessions, and two Individual Assessment sessions (pre- and post- group participation.) 

Group and individual sessions were designed and implemented by a licensed occupational therapist. Growing Together’s program coordinator and home-based parent educator were trained in the “Together Time” intervention and assisted in implementing group sessions in the center, and individual sessions in the home.  The parent educator observed the Occupational Therapist during home-based individual sessions with two families each week.  The parent educator then implemented the home-based individual sessions with a third family each week.

The following program components were provided:

  • 10 Group Sessions on topics related to bedtime, bath time, meal time, dressing and play time (included all 6 families)
  • 6  NCAST Assessments and Structured Interviews (one with each family) before the intervention
  • 4 Post-Test NCAST and ACLS-5 Assessments after the intervention (1 family declined participation and 1 family was absent from group)
  • 30 Home Visits. One with each family per topic (bedtime, bath time, meal time, dressing and play time) for 10 weeks

In order to determine the success of this program, several evaluation components were implemented under this grant including the use of a standardized assessment tool, Nursing Child Assessment Satellite Training (NCAST), the Allen Cognitive Level Screen-5 (ACLS-5), skilled clinical observations and interview/ parent report for each mother.

The Allen Cognitive Level Screen-5 (ACLS-5) is a leather lacing activity used to obtain a quick measure of global cognitive processing capacities, learning potential, and performance abilities and to detect unrecognized or suspected problems related to functional cognition. The screen consists of learning three visual-motor tasks (leather-lacing stitches) with increasingly complex activity demands. Completion of the three tasks requires that the person attend to, understand, and use sensory and motor cues from the material objects (leather, lace, and needles), the administrator’s verbal and demonstrated instructions and cues, and feedback from motor actions while making the stitches. The scores obtained are interpreted using the Allen Cognitive Scale of levels and modes of performance.

Four of the six mothers included in this group agreed to participate in the ACLS. Following completion of the “Together Time” program, all four mothers scored within the 4.1- 4.3 level indicating an ability to function independently in highly predictable routines and environments with the expectation that when change or challenge is introduced, assistance is needed for functioning.

The NCAST Teaching Scale is an evidenced-based intervention and research tool for parent-child interaction.   It is a reliable and valid means of observing and rating caregiver-child interaction for the purpose of assessing strengths and areas needing improvement.  Parent-child “dyads” were videotaped before and after completing the “Together Time” program. Caregivers were asked to choose a simple, but novel, activity they could teach to their child for no more than five minutes. These interactions were videotaped and then scored based on the following observation categories.

 

Caregivers were scored on:  sensitivity to cues; response to child distress; social-emotional growth fostering; and cognitive growth fostering.  Children were scored on: clarity of cues and responsiveness to caregivers.

A combined total of caregiver and child skills is also reported.  A numerical score is derived based on the observation of behaviors check-list.  NCAST identifies dyads that fall below the bottom 10% distribution of scores as a clinically relevant category and labels them “worrisome cases.” NCAST recommends further evaluation and intervention with this group.

All six families included in this program scored below the bottom 10th percentile (most worrisome category) distribution on the pre- test administration of NCAST when compared to their same ages, race and educational level peers.  These low scores indicate low levels of mutually adaptive interactions. An improvement was noted in the post test administration, with five of the six dyad’s moving out of the

 

“most worrisome” category. All children included in the “Together Time” program scored within the average category in the pre and post test scores.

More detailed information was gathered using clinical observations during both group and individual sessions. There were several common challenges observed over the course of the “Together Time” Program. These challenges included difficulty implementing all steps needed to successfully teach their child a task, particularly describing the task, and materials and praising successes and partial successes. For example, in the context of teaching her child how to build a tower of 2-3 wooden blocks, one mother simply placed blocks and a cup in front of her child and said, “do it.” Following a brief period of the child mouthing the blocks in exploration and placing the blocks in and out of the cup, the mother stated “he’s done.”  As a group, the mothers frequently used short commanding language and allowed very little deviation from task specific behavior. Examples of the type of teaching language used by mothers included “do it” “pay attention” and “come on.” Most mothers requested that their children point to pictures, build with blocks, lace beads or color with crayons with repetition of greater than five times during the teaching task.  Very few mothers used the testing materials to play silly games, make funny noises or generally capture and keep their children’s interest in play. Interactions were primarily focused on completing the stated objective (i.e. stack three blocks, color a picture, point to and name body parts in a book). When children demonstrated difficulty performing the task immediately, parents frequently completed the task themselves or forced their children to complete the task by using hand-over-hand assistance. The greatest challenge noted was that none of the seven mothers in either the pre-test or post-test evaluation used any physical affection toward their children by touching or making soothing gestures.

The group did demonstrate several improvements and strengths over the course of the “Together Time” program.  Mothers demonstrated strengths in engaging their children in play activities by establishing eye contact, making alerting noises of comments such as “hey,” “look at me,” or “pay attention”. Across all dyads, mothers demonstrated improved patience, and there were no examples of negative comments toward or about the children, no rough handling, and no yelling nor hitting in the post-test evaluations. Interactions during post-test evaluations included a greater number of joyful and playful interactions than during pre-test evaluations where this type of interaction was notably absent.

Evaluation Summary

Upon the conclusion of “Together Time”, it was noticed that parents and children began to build an environment of safety and trust, and parents practiced skills for engaging their children in developmentally appropriate daily play activities.  For example, mothers were observed teasing their children less, and positioning their children so that they could maintain eye contact and reach and manipulate toys. Parents more consistently allowed their children to play with testing materials and attempt tasks before stepping in.

The NCAST and ACLS were able to demonstrate precise areas of strengths and challenges within each dyad. Overall, mothers demonstrated competency on familiar and highly practiced routines of caring for their children. Through repetitious practice across 10 group sessions, the mothers were able to identify and adopt strategies to support their interactions in less familiar play based daily activities. Mothers were able to verbalize the use of practiced strategies for interaction such as creating a structure to the activity with rules for play and safety, use of engagement strategies such as voice inflection and choice making, or making the activity harder or easier so that their children would keep trying to learn.  

Mothers demonstrated the greatest success in learning how to make rules and recognize how to keep play and learning safe. The mothers showed beginning skills in learning how to change the activities to keep learning fun. The NCAST scores showed that all of the mothers made improvements in how they interacted with their children. Mothers were better able to use language for describing, praising and teaching, and changed how they positioned themselves so that they maintained eye contact and were more engaged.  Parents also did a better job choosing toys and play activities that created better interactions with their children.

Lessons Learned

The information gathered from this pilot project and the assessment and evaluation tools employed showed that:

  • There is a need for programming that utilizes repetition and feedback, and is individualized based on parents’ strengths and needs.
  • There is a need for an experienced facilitator with knowledge of learning theory and development to provide staff training.
  • The demographic group that demonstrates greatest success and participation in this type of group are mothers with stable housing who are committed to attendance for home and group sessions.
  • This model does not work as well with mothers who have a dual diagnoses of mental health issues and an intellectual disability.
  • Mothers benefit from the combined approach of group sessions followed by 1:1 home based sessions for skill practice within the context of their everyday environment.
  • Mothers benefit from peer social groups.
  • Relationships and interaction styles can be positively impacted through this short-term, intensive support program.
  • There is a need for a greater focus on the use of physical affection and soothing touch.
  • There is a need for a greater focus on the use of language and communication styles.
  • There is a need to expand each everyday activity to allow greater time to practice and integrate skills.

 

References

Allen, C. K., Austin, S.L., David, S. K., Earhart, C. A., McCraith, D. B, & Riska-Williams, L. (2007). Manual for the Allen cognitive level screen-5 (ACLS-5) and Large Allen cognitive level screen-5 (LACLS-5). Camarillo, CA: ACLS and LACLS Committee.

Sumner, G. & Spietz, A. (1994) NCAST Caregiver/Parent-Child Interaction Teaching Manual. Seattle: NCAST Publications, University of Washington, School of Nursing.