A Message from the Director
At Casa Colina Children’s Services, the second most frequently served group of children are those with a diagnosis of Down Syndrome. As an early intervention provider, we are often called upon to begin working with the family of an infant with Down Syndrome as early as one month of age.
Physical therapy and occupational therapy services may be introduced to begin development of gross and fine motor skills at approximately 6 to 8 months. Although speech/language pathology services may initially be prescribed during infancy for feeding problems, speech pathology services will typically begin between 18 and 24 months, to improve oral motor functioning and communication skills.
For the past two years, we have also been able to provide a host site for “Up for Downs,” a parent support group for families of children with Down Syndrome. The group meets on the 4th Thursday of every month from 6:30 to 8:30 p.m. in the Early Start Classroom of Casa Colina Children’s Services.
We feel very fortunate for the opportunity to play a significant role in the lives of all the children and families we serve, striving to maximize their potential.
Cindy Sendor, MA, CCC-SLP
Director, Casa Colina Children’s Services and Speech Pathology
Waiting in the Waiting Room
Spotlight on Advocacy
Resources & Links
Focus on Early Intervention
by Debbie Cheben, MSPT and Freda Godinez, MPT
Down Syndrome (DS) is a common diagnosis of the children that we see at Children’s Services . It is a chromosomal disorder, the hallmark of which is an alteration in the 21st chromosome pair, often referred to as Trisomy 21. This may result in neuromuscular, musculoskeletal, and cardiopulmonary impairments that are often managed by physical, occupational, and speech therapists alongside other health professionals. In this article, we will focus on the role that physical therapy plays in the motor development of a child with DS.
Some of the neuromuscular disorders a child with DS experiences may include hypotonia, low muscle force production, slow automatic postural reactions, slow reaction time, and motor delays that increase with age. Of these, hypotonia is the most common feature and contributes to many of the motor delays, including gross motor (movements of the large muscles of the body), fine motor (manual dexterity and hand use) and oral motor (language and feeding). Hypotonia can best be described as “low muscle tone” where the muscle feels softer or “floppier” than typical muscle; and although it cannot be “fixed” or “cured,” physical therapists use many strategies for strengthening the muscles throughout the body for increased function and independence. Maintaining an appropriate weight is important if the child has low muscle tone and/or decreased strength. Excess weight can make learning gross motor skills more difficult. Due to weakness, the child may use compensatory movement patterns that can be detrimental over time. An example would be a W-sit or to move with legs in a split position, causing increased stress to the hips. These compensatory movements, however, can be corrected with practice and repetition of proper form.
Musculoskeletal impairments may include excessive joint movement, laxity of the ligaments, foot deformities, scoliosis, and atlantoaxial instability (in the cervical spine). Atlantoaxial instability can be identified through x-ray imaging. Proper handling techniques and avoidance of potentially dangerous activities (i.e. somersaults) as well as orthotic interventions can be discussed with a physical therapist to support and protect unstable joints.
Congenital heart defects are fairly common in a child with DS. If present, heart defects can result in the child having poor endurance and fatigue. Emphasis on physical fitness may increase cardiopulmonary endurance and muscular strength.
There are commonly two different learning temperaments for children with DS: Motor Driven and Observer. The Motor Driven child takes risks while the Observer may be cautious. Understanding a child’s temperament will help determine what motivates him or her to succeed with gross motor skills development. Some key guidelines to observe when teaching gross motor skills to a child with DS include:
• Motivation and encouragement – make learning time play time. Use a favorite toy for motivation and encourage with smiles and praise. Remember, a family member can also be a great motivator.
• Proper timing for teaching new skills – do not attempt to teach skills that are too advanced. If the child is not yet ready to learn it, it will only end in frustration for both parties. If the child is willing, alternate between easy and difficult tasks.
• Provide the right amount of support - when learning a new skill, provide adequate support and then gradually decrease the amount of support as the child becomes stronger and more proficient.
• Consistency – practice, practice, practice! Make skill practice a part of the daily play routine. 1
A physical therapist can also provide strategies to support a child with DS at home when learning gross motor skills at each stage of development.
Once a child with DS has learned basic gross motor skills, and has improved his or her strength, balance, and endurance, he or she may be ready to further these skills through regular exercise. Have your child choose an activity that they enjoy and can do on a regular basis. Activities that provide regular aerobic exercise - such as karate, horseback riding, soccer, swimming, running, bicycling, etc. - can help a child with DS stay physically fit while also providing additional mental, emotional, and social benefits. HAVE FUN!
1 Patricia Winders, PT, Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals (Betheseda, MD: Woodbine House Inc., 1997).
This book is a great reference for learning how to help your child improve each gross motor skill and is easy to follow.
Waiting in the Waiting Room
by Kesley Johnston
This is a waiting room shout out to all of the amazing therapists that walk the halls of Children’s Services, who work diligently with our children, and with us, and who treat us like family. During the many hours I have waited in the waiting room, every therapist that has passed me has always smiled or said, “hello.” Many of them I know, but many of them I don’t. They make me feel welcome either way.
On a typical Casa day, I get settled in the waiting room, and my therapists meet us there. They listen attentively as I voice my successes and frustrations with my child over the past week. Then, they take my child for an hour and work miracles. I have seen therapists sit on the floor to greet a shy child. I have seen therapists pick up a child and watch as their face lights up in anticipation of their session. I have seen therapists stick to their guns with a child who is just being resistant. No matter the situation, every therapist is happy to see their patients.
At the end of the sessions, therapists spend time in the waiting room with parents giving hope and encouragement. I get detailed notes about the session, homework assignments, and most of all, support. Sometimes we laugh at the crazy antics of my son. We celebrate anticipated, and unanticipated, successes. And on those rare occasions that success feels out of reach … we cry together.
For us, leaving the waiting room is the challenge during our Casa visits. I cannot count the number of therapists who have carried bags for me, opened my car door, and just offered support as my child ran down the halls and hid in therapy rooms. Thank you to all of you who have given up your time to help us, especially those of you who don’t even know us.
So, as I wait in the waiting room, I say, “Hats off to the therapists!” Thank you for your love, support, encouragement, smiles, positive attitudes, hope, and most of all, your knowledge of and talents in your fields. You all make such a difference in every patient’s life, and you give newfound hope to their families.
Kesley is ‘Waiting in the Waiting Room’ every month for Connections.
Spotlight on Advocacy
by Lisa Lockwood
In the July issue, we continued our examination of IDEA (Individuals with Disabilities Education Act), the federal law that guarantees a free and appropriate public education (FAPE) in the least restrictive environment for every person with a disability.
IDEA has six principles that provide the framework around which special education services are designed and provided. The first principle, Free and Appropriate Education (FAPE), was discussed in the June issue and the second, Appropriate Education, in
July. Continuing now, we will break down the third framework principle: Individualized Education.
In order to ensure that students with disabilities receive an appropriate and individualized education, IDEA requires that, after drawing upon current evaluation information, the Individualized Education Program (IEP) team draw up a written document with a design for meeting the unique educational needs of each student with disabilities. The IEP is a road map that establishes where your child is, where you want him/her to go, and how he/she will get there. IDEA specifies minimum requirements that an IEP must satisfy. It must 1) name the person(s) who develop the IEP, and 2) make clear the public agency’s obligation to provide the special education, as well as any related services, identified in the IEP.
Top 8 Essential Parts of an Individual Education Program
1. IEPs Must Have Statements of Present Levels of Educational Performance
Every IEP must include a description of the child's skills in all areas of concern and explain how the disability affects his progress in the general education curriculum. Statements should address academics, life skills, physical functioning, social and behavioral skills, and any other areas of concern affecting the child's ability to learn. IEP teams typically use formal assessment to determine the child's functioning and establish a baseline of performance. The team may also use anecdotal information and progress data from the child's classroom teachers to describe the child's skills.
2. IEPs Should Include Statements of Measurable Annual Goals
The IEP must contain statements of your child’s goals that are updated on an annual basis, at least. Goal statements specify what your child is expected to learn in the coming year, including goals for academic skills, and may also include goals for functional skills, as appropriate. For children who participate in functional skills programs and who take alternate assessments, the IEP must also contain measurable short-term objectives that will be used to measure the child's progress toward reaching his annual goals.
3. Explanation of Progress Measurement is an Important Part of an IEP
The IEP must contain an explanation of how progress toward goals and objectives will be measured and describe how that information will be reported to parents.
4. Individual Education Programs Need a Description of Special Education Services
The IEP must include a description of the student's special education program, specially designed instruction, and related services the child will receive to help him progress toward meeting his educational goals. It must also include the amount of time he will receive services for and the setting in which he will receive those services.
5. Statement of Participation in the Regular Education Program
To ensure that children are educated in the least restrictive environment and to the greatest extent appropriate, the IEP team must consider if and how the child will participate in the general education program with typically developing children. The IEP must specify the amount of time a child will participate in regular education programs and give the rationale for that decision.
6. IEPs and Testing - Adaptations and Modifications
The IEP must explain what types of testing adaptations and modifications will be used with the student and why they are necessary. If the child will participate in alternate assessments, the rationale for that decision must be included in the IEP.
7. Statement of Length and Duration of Services
The IEP must include a projected beginning and ending date of services, the frequency of the services, where they will be delivered, and how long they will be provided.
8. IEP Statement of Transition - Preparations for Adult Life and Independence
Beginning no later than age 16, the IEP must include measurable goals for the student's anticipated postsecondary program and a description of the services needed for the student to reach those goals. Transition goals and services focus on instruction and support services needed to help the student move from the school environment into a job, vocational program or other program designed to promote independent living, or, alternatively, teach the student how to advocate for themselves in college,
In the September issue we will look at the fourth principle of IDEA: Least Restrictive Environment (LRE).
As always, to continue your education on your own, visit http://idea.ed.gov
Lisa explores advocacy issues of special needs parents every month for Connections.
Children's Champions: Stories of Courage and Hope
by Kesley Johnston
On January 19, 2005, Dave and Marissa Little were given a heartbreaking diagnosis during their prenatal ultrasound and amniocentesis. Their unborn daughter had Down Syndrome. They had five days to decide whether or not to keep her. They were devastated. Whoever expects this? Whoever thinks that when they decide to start their family that special needs will be a part of it?
They immediately went to see a perinatologist who specializes in complicated pregnancies. They were concerned about their baby’s heart and intestines (60-80% of babies with DS are born with major issues in these areas), and her survival during birth. After the doctor did a 45 minute ultrasound, he stated that besides the amniocentesis test, there were no indications that their daughter had DS. She was healthy! At that moment, Dave and Marissa knew that they were going to keep their precious daughter.
They were told by numerous resources that the first three years of her life were the most important for brain development. When Sadie was born, the Little family devoted their lives to ensuring that she have the best opportunities for progress. They jumped in with both feet: therapy seven times a week, driving 200 miles for the best programs they could find for her, which included Children’s Services’ in-home Infant Stimulation Therapy. Marissa left everything behind - her friends, exercise, career.
However, Marissa did join a support group and, during one of the first sessions she attended, noticed that one child in particular had wonderful behavior. Marissa asked the child’s mother, “How do you get your daughter to behave like that?” The mother replied that having a disability is not an excuse. Having Down Syndrome just means that Sadie will have to work harder. Marissa took that advice to heart, and from that point forward she held Sadie to the same expectations as her neurotypical son.
Sadie entered the school district at age three, testing with a normal IQ. Most children with DS have an IQ of 75 or below, but hers was over 100! Dave and Marissa were overjoyed, and fought for a way for her to be enrolled in a preschool with typical (non-special needs) peers. When Marissa took Sadie for her three-year check up, the doctor wanted to know what therapy services she had been receiving. Marissa listed off all seven programs, and, additionally, Sadie was attending pre-school five days a week. The doctor said that Sadie could do even MORE. More physical, occupational and speech therapy. Marissa simply nodded, and then signed Sadie up!
At Children’s Services, Sadie has received feeding, occupational, physical, and speech therapies, in conjunction with the therapies she receives from her school district. During Sadie’s Individualized Education Program (IEP) meeting prior to kindergarten, Dave and Marissa were told that Sadie did not qualify for services under a cognitive delay. Apparently, Sadie will be the first Down Syndrome student to enter mainstream Kindergarten in the history of the school. She will begin school able to feed herself and drink out of a cup. She will be able to play soccer with her classmates and share the 65-piece jigsaw puzzle she put together during ‘show and tell’.
Sadie continues to show her community exactly how precious her life, and the life of every child with DS, is . . . and the potential they have to make a contribution in the world.
Kesley will be sharing the success stories of families at Children’s Services every month for Connections.
Resources and Links
by Sandra Zaragoza-Kaneki
539 North Lake Avenue
Pasadena, California 91101
Regional Center, San Gabriel/Pomona
761 Corporate Drive
Pomona, CA 91768
Down Syndrome Association
Team Up For Down Syndrome
360 East 1st Street, #35
Tustin, CA 92780
(714) 665-TEAM (8326)
Down Syndrome Association
of Los Angeles, Inc.
16461 Sherman Way, Suite 180
Van Nuys, CA 91406
The Dignity Group
1055 N Euclid Ave, Ontario
Regional Center, Inland
1365 South Waterman Avenue
San Bernardino, CA 92408
Up for Downs Support Group
4th Thursday of each month
6:30pm - 8:30pm at Children's Services
For information, contact:
Sandra provides helpful links and resources for the special needs community every month for Connections.
This publication is produced by Casa Colina Children's Services and the parents of the children it serves. It is intended for informational purposes only and does not constitute legal or medical advice or the endorsement of specific products or services by Casa Colina.
An Event for Adults
August 26, 2012 Doors open at 6:30 PM
Victorian Room at Imagine That!
1318 W Ninth St, Upland, CA 91786
Comedy for Causes will host an hilarious summer evening featuring comedians Jodi Miller (The Tonight Show, CNN’s Showbiz Tonight), Jamal Coleman
(Flappers Comedy Club, tvguide.com), Eileen Kallo
(Ice House, Improvs, Flappers), and David Nunez
(Comedy Store, Laugh Factory), with local funny girl, Laniea D
(Flappers, The Ontario Improv), serving as Emcee.
Tickets: $20 each
All proceeds will support
Casa Colina Children’s Services
(Purchase a Table of 10 - receive 10 free opportunity draw tickets!)
For information and tickets visit www.casacolina.org or call Krista Struve, Director of Corporate Sponsorship and Events at (909) 596-7733 x2223 or email@example.com.
October 26, 2012 7:00PM
Padua Hills Theatre
4467 Padua Ave, Claremont, CA 91711
Join us for the fundraising event of the season to benefit Casa Colina Children’s Services! Set against the backdrop of Morocco and incorporating many themes from the beloved 1940s celluloid classic, An Evening in Casablanca is a night not to be missed. Come place your bet at the roulette table, sample the baklava and bid on fabulous auction items.
For information on sponsorship, advertising and individual tickets visit www.casacolina.org or contact Krista Struve, Director of Corporate Sponsorship and Events, at (909) 596-7733 x2223 or firstname.lastname@example.org.
SAVE THE DATE
3rd Annual Harvest Festival
October 18, 2012
Casa Colina Children’s Services
Games, prizes, music, food and fun for all ages! Once again, Children’s Services will celebrate the autumn season with its Harvest Festival. This is a free social event for parents and children, and an opportunity to show off your Halloween costume early!!
For more information, contact Children’s Services at (909) 596-7733 x4200.
11th Annual Trends in Autism Conference
April 6, 2013
Western University of Health Sciences, Pomona, CA
An opportunity to learn about the latest developments in the research and treatment of autism from some of the leading authorities in the field, including Margaret L. Bauman, M.D.
For more information, visit www.casacolina.org.