Issue 5 - November 2012

A Message from the Director

Wow, what a busy month October was and now we head into the holiday season!!! First, I want to take a moment to thank everyone who assisted with, participated in and/or sponsored An Evening in Casablanca. In order to continue to provide our patients and families with what they need, it is essential that we actively fundraise to offset the Foundation’s cost of subsidizing each child seen here at Casa Colina Children’s Services. The evening was filled with fun, socializing and the recognition of two people important to children in our community, Mr. Adel Sayegh and Mark Woodsmall, Esq. We are already planning for next year’s event, so if you have some time on your hands or are willing to make time to help, our Friends of Casa’s Kids committee is always looking for new people to assist. The next meeting will be Tuesday, January 8 at 5:30 p.m.

This month’s newsletter is focusing on families with twins, triplets and quadruplets. I can’t imagine what it would be like to parent multiples, but we have a couple of families who wanted to share their experiences with you. As many of these children are born prematurely, they receive Early Intervention services soon after they are born. Sharon Perez, one of our Child Therapy Instructors, has developed a reputation for maximizing the potential of children from multiple births. She will also share her experiences and provide some pointers for all of us who are or will be parents.

On behalf of the staff and families we serve here at Children’s Services, we wish you all a happy and safe Thanksgiving holiday!!

Cindy Sendor, MA, CCC-SLP
Director, Casa Colina Children’s Services and Speech Pathology

Therapy Corner

Waiting in the Waiting Room

Spotlight on Advocacy

Children's Champions

Resources & Links

Upcoming Events

DECEMBER ISSUE:

Focus on Keeping the Holidays Joyous

Therapy Corner

by Shaon Perez, BA

Since 1989, I have been a PT Aide and In-Home Early Intervention Coordinator for Casa Colina Children’s Services. The past 3 years, however, have definitely been very rewarding for me as I have been able to work with many children who were the product of a multiple birth. I have provided early intervention services for two sets of quads, three sets of triplets and four sets of twins. Wow, has this opportunity made me refine my teaching and communication skills very quickly!

Part of my role is to educate families so they can assist their children in meeting developmental milestones. I have always encouraged the parents I work with to do the following:

1. Love and respect your children and their own individual identity.

2. Always make time to do one-on-one activities with each of them.

As you can imagine, parents of multiples often have very little time for themselves. Every day family living and activities can be very challenging. One-on-one time with each of the children is both vital and important for their development. You should see my parents’ reaction as I share this information with them. This exclusive one-on-one attention is vital for multiples. It not only helps parents to bond with that particular child, but it helps to promote and develop individual language and social skills needed for further development. Additionally, this type of interaction can help a quieter, more reserved child gain confidence in their speaking ability so they will want to be heard in the family setting. These tasks can be done in the simplest ways, such as taking turns on who goes to the grocery store, rotating who goes to get the mail or waking one child up earlier than the other to have breakfast. These small everyday activities can go a long way to making a difference.

The point is for parents to maximize their quality time with each child. I believe I have learned more from my parents then they have learned from me and I feel blessed to have worked with all of my families. I have the best job in the world! Thank you for trusting in me with your precious gift and allowing me share in their development.

Waiting in the Waiting Room

by Kesley Johnston

I walked up to a hospital coffee counter with Charlie, my four-year-old son who has autism. I ordered my drink and a squirt of whipped cream for him. It had been a long day and Charlie was exhausted. His squirt of whipped cream wasn’t enough for him and he quickly spiraled into a screaming, violent tantrum. I couldn’t even get him out of the café. I sat on the floor doing everything that I could to keep him physically safe. A man approached me and said, “Some of us come here to get away.”

“My son has Autism.”

“You think you’re a victim, but you’re not.”

I stared at him dumbfounded. It had never occurred to me that I was a victim. I felt hot tears well up in my eyes and a single tear rolled down my cheek. I looked at Charlie, the love of my life, Autism and all. I felt so alone at that moment…the rest of the world could not see the dedication, love, devotion, and sacrifice that I make…that we all make…for our children. I just had to sit and wait until the tantrum was over. I had to wait for the world to understand…to have some compassion.

Two weeks later, we were in a shopping center parking lot. Charlie started to spiral into another tantrum. I cringed. A mother and daughter walked by us, and gaped. I just took a deep breath. Then I heard, “Can I help you with your cart?” I looked up and a kind, old lady was smiling at me.

“No thank you. I will be okay once I get him in the car.”

This tantrum ended quickly. I got Charlie into his car seat and started to unpack my groceries. The same lady stopped her car and rolled down her window.

“I just want to tell you that you are doing a wonderful job. Keep up the good work. I know it’s a long, hard road, but you are doing great.”

I felt hot tears well up in my eyes. A single tear rolled down my cheek, and I broke out into a huge grin. I didn’t have to wait very long to find compassion and understanding in this world.

Kesley is ‘Waiting in the Waiting Room’ every month for Connections.

Spotlight on Advocacy

by Lisa Lockwood

IDEA (Individuals with Disabilities Education Act) is the federal law that guarantees a free and appropriate public education (FAPE) in the least restrictive environment for every person with a disability. It is composed of six principles that provide the framework around which special education services are designed and provided.

Thus far, we have discussed the following:

June issue: First principle, Free and Appropriate Education (FAPE)

July issue: Second principle, Appropriate Education

August issue: Third principle, Individualized Education

September Issue: Fourth Principle, Least Restrictive Environment (LRE)

October Issue: Parent and Student Participation in Decision Making

Now, we will finish our discussion of IDEA, with the sixth and final principle: Procedural Safeguards.

Procedural Safeguards are a set of activities whose purpose is to ensure that:

· The rights of children with disabilities and their parents are protected.

· All information needed to make decisions about the provision of a free appropriate public education to the student is provided to parents of children with disabilities and to the student when appropriate.

· Procedures (mediation and due process) are in place to resolve disagreements between parties.

Some procedural safeguards under IDEA include the right of parents to:

· Inspect and review their child’s educational records.

· Obtain an independent educational evaluation (IEE).

· Be given written prior notice on matters regarding the identification, evaluation, or educational placement of their child.

· Request mediation and an impartial due process hearing.

· Be given a full explanation of all of the procedural safeguards under IDEA and state complaint procedures.

· Appeal the initial hearing decision to the State Education Agency (SEA) if the SEA did not conduct the hearing; (also the right of the public agency).

· Have a child remain in his/her present educational placement, unless the parent and the public agency agree otherwise, while administrative or judicial proceedings are pending.

· Bring a civil action in an appropriate State or Federal court to appeal a final hearing decision; (also the right of the public agency).

· Request reasonable attorney’s fees from a court for actions or proceedings brought under the IDEA under certain circumstances.

· Give or refuse consent before their child is evaluated or reevaluated.

· Participate in (and in some cases to appeal) discipline decisions regarding students with disabilities.

IDEA provides States with the regulations, guidelines and requirements to support them to design and implement programs in special education. The end-goal is providing student achievement while giving them access to an educational environment which includes non-disabled peers, as much as possible. Having a good, understanding of these guidelines will help you advocate for your child and help reduce the anxiety you, as a parent, may feel while doing it.

To continue your education on your own, visit http://idea.ed.gov.

Principles of IDEA (2005-2011). In Learning Disabilities Association of America. Retrieved from http://www.ldanatl.org/aboutld/parents/special_ed/principles.asp.

Lisa explores advocacy issues of special needs parents every month for Connections.

Children's Champions: Stories of Hope and Courage

by Stephanie B.

The news never really sinks in that you are having quadruplets until you actually have four babies right there in front of you. We had a flawless pregnancy and an uneventful NICU stay that lasted all of two weeks. We didn't even qualify for any post-NICU services because the quads were born at 34 weeks and, in the world of multiples, that gestation is a complete success. Our story didn't end there though.

At eight weeks we had our first appointment with our pediatrician and they noticed sun setting in the eyes of Baby B. This is a classic sign of pressure, or fluid build-up, in the brain. After waiting and watching it was determined that a VP Shunt was necessary for our daughter to relieve the fluid caused by a Subdural Hygroma. As a direct result of this surgery, our daughter qualified for services from Inland Regional Center. Lucky for us, we had the inside scoop! Sharon Perez was working with my best friend and fellow quadruplet mom, so I begged for Sharon, since she was already fully aware of what she was in store for.

Once back in our home, and after months of working with Baby B, Sharon began to see large gross motor delays in Baby D. He was not hitting any of his age appropriate milestones. At that point, with Jennifer Rode from IRC, Sharon orchestrated an intake evaluation for my son. Sharon became a pivotal fixture in our family. She worked with our kids helping them hit milestone after milestone. My once dormant son now runs and jumps and excels in gross and fine motor skills. As for Baby B and her VP shunt, there is not a person yet who has met her that even believes she has a VP shunt. Sharon's work with her has ensured every goal and milestone is met.

Having multiples is an adventure every minute of the day. It is a constant juggling act. You throw your balls up in the air and hope that none fall. I also have a seven-year-old son who is in the second grade. When you add that into the mix, plus my husband and I working full time, you can guarantee absolute pandemonium. When Sharon mentioned taking the quads to a center-based program I was so reluctant. To me, these kids were still preemies. We had already battled RSV hospitalization and countless other colds and flus. Bringing them into a classroom setting was almost too unbearable a thought for me to handle. I am glad I went against my gut on this! Germs or no germs, my four children have flourished so much in the last year and a half. They have skills they would have never mastered at home. Their speech has improved so much that my non-verbals are quite chatty. Fine motor skills are being mastered. Gross motor skills are at levels that I am sure I didn't expect at this age level. I don't remember my eldest son pedaling a bike at two, and I now have four pedaling two- year-olds.

While at Casa Colina, with the help of Tina and Mary and my countless conversations still in home with Sharon, we began seeing some issues arise with Baby C. Issues that would not have been spotlighted so easily if she hadn't been mainstreamed to Casa Colina. Baby C has now been diagnosed with a Sensory Processing Disorder and is being treated both at home and at Casa Colina. Tina and Mary have worked so hard to provide Baby C an environment to work through her SPD, offering alternatives. They have plan B's all the way to Plan Z's if that's what it takes. They work one-on-one with her, at her pace, basing everything off her cues. The progress she has made is unimaginable. She has come so far, and is now armed full of tools and resources she learned from Tina, Mary and Sharon. She is becoming successful day by day as a direct result of Casa Colina. We are eternally gratefully.

When people think quadruplets, they always think that's a lot of diapers and bottles and crying, but it is so much more. There were additional struggles: learning to crawl, learning to stand, building a tower. Then there are the joys as a result of the hard work by Casa Colina: the first steps, the first words, eating with utensils, going to a one-on-one session and not needing mom to go. So, yes, they are quadruplets; yes, it was a lot of diapers, but it was a lot of worry replaced by lots of success and joy as we hit goal after goal and milestone after milestone.

Thank you to all involved who are writing each chapter in the story of my children's lives. Their success is your success. Our 3 years here were filled with some of our best memories!!!!!!

Stephanie (right) with her "quads" and therapist, Sharon Perez (left)

Resources and Links

by Sandra Zaragoza-Kaneki
Pomona Valley Mothers of Twins Club
PO Box 264
Upland, CA91786
United States
Regional Center, Inland
1365 South Waterman Avenue
San Bernardino, CA 92408
(909)890-3000
Regional Center San Gabriel Pomona,
761 Corporate Drive
Pomona, CA 91768
(909)620-7722
Southern California Mothers of Twins, Inc
The Triplet Connection
P.O. Box 429, Spring City, Utah 84662
(435) 851-1105
Fax: (435) 462-7466
Tri-County Parents of Multiples Club
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.

UPCOMING EVENTS

Annual Holiday Party
Sponsored by The Pomona Rotary Club
December 20, 2012 3:00PM - 5:00PM
Casa Colina Children's Services

Come visit with Santa and Mrs. Claus and enjoy live carolers. Participate in face painting provided by students from Pomona Catholic School. Light refreshments will be served. We hope to see you there!

RSVP to Teri Andres at 909/596.7733 x4202 or tandres@casacolina.org to receive your Photograph Coupon!

SAVE THE DATE

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.

255 East Bonita Avenue
Pomona, CA 91767
909-596-7733

Toll-free 866/724-4127
FAX 909/593-0153
TDD-TTY-Q 909/596-3646