Child of the Month: April 2014

Granden: Impact Update!

Granden age 4For nearly 5 years, Geri Kate and Frank’s life has been a race to provide their son Granden with the services and therapies he needs to not only survive but thrive. Granden’s diagnosis of Jeune syndrome, a rare genetic disorder where nearly 60% of children do not reach the age of two, led his parents to United Cerebral Palsy of Orange County (UCP-OC). With the help of UCP-OC’s quick acting Early Intervention team, he graduated from UCP-OC physical therapy, reached his monumental 2nd birthday and now has a more healthful future. Many of you were touched by hearing Granden’s story, and made the pledge to support United Cerebral Palsy of Orange County’s Early Intervention program. Through your generosity, the Early Intervention program is able to serve more than 360 children annually. We sincerely thank you.

Today, two years later, UCP-OC sat down with Geri Kate and asked her for an update on where Granden is today, below is our conversation

UCP-OC: Where is Granden at today and how has UCP-OC helped get Granden to where he is today?

Geri Kate: Granden is a talkative 4 ½ year old about to graduate from UCP-OC speech therapy. UCP-OC’s Feeding Group helped Granden start to feed by mouth and rely less on his feeding tube. With this motivation we entered him into an intensive feeding program, and now he does all feeding by mouth. UCP-OC has been the catalyst to achieving all the milestones he has reached in the past4 years; our experience with UCP-OC has truly been life changing.

 

UCP-OC: What should others know about UCP-OC and how they can make a difference?

Geri Kate: There are many ways to get involved! You can volunteer; as a mother I volunteer on the Parent Guild that assists in fundraising events for the organization. You can sign-up to give a donation monthly; my nieces gave a portion of their allowance to support “Granden’s Cause!” Or, you can even help to fulfill toys and materials on their wish list. A full list of wish list items can be found at www.ucp-oc.org.

 

UCP-OC: We are very grateful for your support, can you share why you & Frank give both financially and of your time?

Geri Kate: UCP-OC has done so much for our family and the community; it is our way of giving back. They have guided Frank & I through the many services, resources and therapies Granden needed and go above and beyond to care for the families and children that walk through their doors.

 

UCP-OC: What is your favorite UCP-OC moment with Granden?

Geri Kate: The moment Granden started walking in physical therapy with our physical therapist at the time, Melanie, was a tearful and very emotional experience that we will never forget. We had fears of him never walking, and instantly we were filled with jubilation, relief and thankfulness for the hard work and dedication shown to Granden.

 

Granden’s original story & video is at: http://www.ucp-oc.org/granden.

Child of the Month: February 2014

Lance: February 2014

Lance in Speech Therapy at UCP-OC
Lance during Speech Therapy at UCP-OC

Lance is almost 3 years-old, and his bubbling personality and joyous spirit will capture your heart immediately. Lance loves trains, and his favorite food is pizza—with heartfelt thanks to his occupational therapist, Ria, who has introduced him successfully to a variety of foods. At therapy, Lance loves to finger paint and do any arts and crafts project. As a Laguna Beach native, keep an eye out for his art work in the Sawdust Festival in a few years!

Sweet, smiling Lance came to UCP-OC at 20 months of age. Prior to receiving therapy at UCP-OC, Lance’s vocabulary was limited to 3 words. His speech therapist, Jeanné, worked diligently with Lance on requesting labeled objects, participating in reciprocal interaction through modeling and play, and strategies to facilitate conversation.  Then one day, after several months of speech therapy, there was a language breakthrough! Lance imitated a word “ma-ma” and then he started imitating more and more words. One of Lance’s favorite activities during therapy is to play in the bean bucket. Jeanne hides objects in the beans and Lance digs through the beans to find and label the hidden treasures. This allows his therapist to further work on labeling nouns and verbs and peer interaction. Today, Lance has greatly improved his receptive and expressive language skill and says multiple word sentences, even using past tense verbs!

After coming to UCP-OC for speech and occupational therapy, Lance joined the very popular Let’s Grow group class with Miss Ana and most recently joined the Talk, Play, Learn group with Miss Pati.

His occupational therapist, Ria, worked with Lance in improving his oral motor skills in order to manage textured foods safely. Prior to his intervention, Lance tended to swallow whole pieces of food without chewing it. Due to this Lance’s diet was limited to mushy textured, stage 3 baby foods. After several months of therapy, Lance is now able to enjoy most toddler foods, but he prefers them in pizza form!

Lance with Brother
Lance with his brother Clayton

Recently Lance became a big brother and is already impressing everyone around him at how nurturing and attentive he is to his baby brother Clayton.

Lance will be turning three at the end of February and will be transitioning out of UCP-OC and into the school district. As difficult as it is to see his smiling face go, it is a true testament to the superior work and dedication our therapists have shown Lance!

 

 

 

Lance Child of the Month and Family

Lance’s mother, Laura Lee, says, Ria, Jeanné, Ana and Pati have been absolutely fantastic with Lance these past 17 months. The changes we have seen in Lance have been nothing short of a miracle, and we will be ever grateful to Lance’s therapists and all of the wonderful people at UCP-OC, including Vianney who was so quick to find Lance a spot when our RCOC case worker inquired; the occupational speech therapist who first assessed Lance in October 2012; Anais who amazes me daily with her sweet disposition and quick, genuine smile; and the many parents I have met who encourage their children and are ever so busy with their toddlers’ schedules but never complain. UCP-OC truly is an amazing place!”

 

If you would like to make a gift to support the services that are helping Lance and his family, please click here or contact Elizabeth Eckman at eeckman@ucp-oc.org  for more information.

Will you be our Valentine?

Will you be our valenting

Your love lasts longer than roses, and is sweeter than candy.
This Valentine’s Day give the gift of a Life Without Limits!

Together we can create a Life Without Limits & provide children with disabilities the critical services they require. 
Children are the heart of our organization. Will you share your heart with them?

Thank you, from the bottom of our hearts!

Learn more about the children above or make a gift at http://www.ucp-oc.org/kolby. 

Child of the Month: January 2014

January 2014: Kolby

“Gotta say hello to the ladies!”

UCP-OC Physical_and_Occupational_Therapies
Kolby and his mother, Danielle.

Kolby is a 6 year-old charmer who already knows the value of making the rounds to say hello to the ladies.  If his charisma and drawing personality doesn’t get you, his smile will. Kolby’s infectious grin will turn any day around! Three years ago Kolby entered UCP-OC’s doors suffering from very tight muscles that make it difficult to do even the simplest movements we take for granted.

Kolby has a genetic disorder known as chondrodysplasia punctata x-linked recessive. One of the symptoms of this disorder is cervical stenosis of the spine (narrowing of the spinal canal).  In fact it was so narrow that it was compressing his spinal cord 60% at the C-1 vertebrae level. He was able to have surgery to correct the compression, however the damage done is what he has to battle every day.

As a part of his “battle team” are UCP-OC Therapists, Lisa Kerfoot (PT), Frances (OT) and Cori (PT).  When first coming to UCP-OC Kolby was not able to use a walker to get around but had to rely on someone else to move.  At UCP-OC, therapy is play based and his PT and OT appointments include having him walk around the office in his walker greeting everyone, activities that make him reach  and stretch his arms and torso such as playing with cars, games and activities that work on his balance and encouraging him to walk on his own. Since coming to therapy he uses his walker everywhere and he just took his monumental first steps without his walker!

Kolby and Physical Therapist Cori.
Kolby and Physical Therapist Cori.

Kolby’s mother, Danielle, says that she is “constantly encouraged by the other families in the lobby and has found comfort in hearing other families’ journeys. Kolby loves coming to UCP-OC and looks forward to his play time with his therapists.”

UCP-OC intrigued Danielle not only for the superior Therapy, but also for the variety of services UCP-OC provides the community. Specifically speaking, she was very interested in UCP-OC’s recreational classes after school. These classes encourage fitness and explore a child or teen’s creativity through painting and drawing. It also gives them an avenue for important social opportunities that are not commonly offered for children with disabilities. This past fall Kolby participated in soccer through the VIP program in AYSO and he was able to score goals and earn his first trophy!

If you would like to make a gift to support the services that are helping Kolby and his family, please click here or contact Elizabeth Eckman at eeckman@ucp-oc.org  for more information.

Child of the Month: December 2013

December 2013: Brooke

Brooke ended her first evening at the Friday Night Club telling us she met a friend; something we had never heard her say before.

Brooke & Natalie
Brooke with Friday Night Club Founder Natalie Cernius

At 15 months of age, we learned our daughter Brooke would have challenges ahead of her. Now 16 and with a diagnosis on the autism spectrum, social interactions with peers are often difficult and distressing for her, many times leading to seclusion. As she entered her teen years, Brooke saw her sister socialize with friends and wanted to participate in “teenage” activities, but it was difficult to find a place where she would fit in. We knew there were many teens for Brooke to meet, there was just nowhere for this to take place. As parents, this affected us deeply. Then two years ago, through United Cerebral Palsy of Orange County (UCP-OC), we heard about the Friday Night Club.

Friday Night Club opened Brooke’s world. This bi-weekly event is a place where teens with disabilities feel welcomed and accepted. It gives teens with or without disabilities the opportunity to play games, watch movies, sing karaoke and simply spend time with one another in an inclusive and fun environment. Friday Night Club gives teens with special needs something to look forward to.

Every person deserves a place to belong and friends to share in their journey, and Brooke now has that. This club brought out positive emotions in Brooke we had never seen, and more than anything we see self-confidence. In addition to Friday Night Club, Brooke looks forward to UCP-OC’s therapeutic fitness and music classes, as well as respite with a trained UCP-OC employee, which also gives us a much needed break. UCP-OC has given our daughter a home.

Kershberg family
Kershberg Family

With your help, Brooke can continue to look forward to Friday Night Club and the other UCP-OC services she and nearly 4,000 Orange County children and families utilize throughout the year. The Friday Night Club is just one of the many programs UCP-OC offers to end the isolation that so many children and teens with special needs feel. Programs at UCP-OC serve the critical developmental, social, and emotional needs of children and teens with disabilities and provide much-needed support to parents and caregivers, including education and skilled childcare.

We invite you to join us in giving back to UCP-OC this season in gratitude for all UCP-OC has done for our daughter and her new friends. We are grateful for a place where teens can feel accepted for who they are. 

UCP-OC relies on your generosity to fill these critical gaps in services. Children, teenagers and young adults with special needs are a growing demographic in Orange County, and are often isolated and overlooked. Together we can foster friendship and acceptance for all children with disabilities in Orange County. Please help children and teens live a Life Without Limits by sending in your gift or going online to www.ucp-oc.org/give today.

Thank you for making a difference in the life of Brooke and her friends at UCP-OC.

Hilary & Mark Kershberg

P.S. Visit www.ucp-oc.org/give to make a gift today and watch Brooke’s video of her journey to friendship.

World CP Day, Child of the Month: October 2013

October 2013: Wyatt

With World CP Day being this past Wednesday, October 2nd we thought it would be fun to feature a very special boy with CP again and give you a bit of an update on what the therapists at UCP-OC are currently working on to make sure he lives a Life Without Limits!   

On World CP Day:

Please join us as we recognize and celebrate the many families and children we serve with cerebral palsy! As United Cerebral Palsy of Orange County, World CP Day is a wonderful opportunity for us to share our appreciation for your support of our organization.  We are honored to serve children with any developmental disability while we pride ourselves on our expertise in treating children with Cerebral Palsy.

We hope this day will lead to many more opportunities to acknowledge and support our families throughout the community that have children with many different disabilities.

We know World CP Day was Wednesday, but here is how you can get involved still:

  1. Post your idea to change the world for people with cerebral palsy!The best ideas will be given to inventors, to turn dreams into reality at www.worldcpchallenge.org
  2. Like our Facebook page, follow us on Twitter and even YouTube Channel!
  3. Share this story with a friend or on your Facebook.

On Wyatt Review & Update:

Five years ago, we noticed our sweet 6 month-old son missing developmental milestones, and we began to search frantically for a cause. Our answer was clear, yet one we struggled to accept. Our son, Wyatt, was diagnosed with hypotonic cerebral palsy.

It is estimated that over 600,000 children and adults in the U.S. manifest one or more of the symptoms of CP. Currently 8,000 babies and infants are diagnosed with the condition each year.

Cerebral palsy (CP) is damage to the brain, occurring during fetal development; before, during or shortly following birth; or during infancy, that affects the overall muscular skeletal system. CP is characterized by an inability to fully control motor function, particularly muscle control and coordination.

For Wyatt this presents itself in very low muscle tone resulting in difficulties balancing and holding himself up; and in his speech, gross and fine motor skills.

Daily life is fatiguing for our son.

With his diagnosis looming over us we were worried. Would he be able to go to school and have the same opportunities as any child? My wife Jemi and I discovered the search for services is multifaceted and complex. After three years of Wyatt receiving therapy at many different therapy offices, we found UCP-OC and were able to breathe a sigh of relief. His care is no longer fragmented and Wyatt receives all the services he needs in one place.

United Cerebral Palsy of Orange County (UCP-OC) is a place with clinical and social support; a place that could answer our family’s questions; a place that feels like home. All therapies are play based to encourage a fun and motivating atmosphere.

Wyatt_TireswingPhysical Therapy: Wyatt receives physical therapy that is helping him to walk confidently on his own, go up and down steps and keep up with his peers. His physical therapist, Cori, has Wyatt ride swings for vestibular stimulation and to work on core strength. On the tire swing he strengthens his core and lower extremities by leaning over to pick up toys on the floor.

Occupational Therapy: OT helps Wyatt with his play and fine motor skills, such as holding a crayon to color and dealing with changing social environments so he can experience his peers to their fullest and to make friends.

Speech Therapy: Wyatt no longer receives speech and language therapy, however many children with CP have difficulties with their speech. Therapists work on strengthening speech articulators (tongue, lip and cheek muscles) as well as breath support to help facilitate speech. Many of the children practice their speech skills with the help of an iPad.

Today Wyatt attends school and participates in the classroom with his friends. He feels like everyone around him, and as a parent that is all we can ask for. We have new hopes and dreams for Wyatt, and we are seeing these become a reality with the help of UCP of Orange County. Wyatt has a bright future of more growth!

Sincerely,

Jemileth & Mark Dipko

Proud Parents of Wyatt

Child of the Month: September 2013

September 2013: Aya

Aya 1We first met Aya in March 2013 when her family flew “across the pond” from England so that she could receive services from UCP-OC. Aya is almost three years old and has an undeniable smile and the cutest little walker you will ever see!  Her difficulties with balance due to her CP and different medical approach in England brought her family to the states to receive services. Aya’s cousin received services from UCP-OC and insisted that Aya come to meet with our therapists.

During her visit in March, Aya began to walk with the assistance of her walker. She has about the cutest walker we have seen! This past August Aya’s family came to UCP-OC again. The UCP-OC Team has been working on refining the things they focused on the first visit and encouraging her towards walking independently. Aya is a strong clever girl that is determined to work and every day her family wakes up hoping and praying this will be the day she walks!

From the start Aya had difficulty with her balance and depended on her mother  to keep her upright. Throughout her time at UCP-OC, physical therapist Moira strengthened her tone, muscles and worked on other physical weaknesses characteristic of her cerebral palsy.

Her occupational therapist, Kristy, has been working diligently as well on her fine motor skills, as well as  assisting Aya with her ability to be more confident in her environment. Kristy works on these elements to allow her to enjoy all the fun things we have to offer (playgrounds, slides, Disney) by working on her body awareness, sensory regulation and emotional regulation. She is now more confident with using her body to help her explore her environment and she is able to enjoy playing with her sister in all environments. Aya’s treatment also focused on her using her right hand more and improving her fine motor skills.

Aya’s mother says, “UCP-OC has helped Aya clearly become a more confident child, overcoming her fears, working continuously and consistently targeting the weaknesses she ha. she is looking great and her character is evolving through the amazing team she works with!”

If you would like to make a gift to support the services that are helping Aya and her family, please click here or contact Elizabeth Eckman at eeckman@ucp-oc.org  for more information.

Aya's Walker
Aya’s Walker
Aya with her sister and therapists Lisa and Kristy.
Aya with her sister and therapists Lisa and Kristy.

Child of the Month: July

July 2013: Kiaan

KiaanJuly’s Child of the Month is a very special boy at UCP-OC for many reasons, and we wanted to celebrate him on his birthday month!

Kiaan was born on July 4th, and he just celebrated his third birthday! Kiaan is a micro preemie, being born 15 weeks early. The first 4 months of his life was spent in the NICU with his family by his side. With every day having new fears and uncertainties, Kiaan’s parents Neha and Jesse consider him their miracle baby.

Being born on a day with fireworks must play into his playful personality. Countless times his mother Neha has caught him “just being playful” teasing the dog at home. Luckily we haven’t experienced his cunning tricks during therapy yet! He couples his teasing with his heart-warming smile; which normally works pretty well for him. Despite all his hard work in the past 3 years he is one of the happiest children I have seen, although that is not what caught my eye; it is his deep concern for others that truly impresses me. Though he has gone through so much he is constantly concerned with the children around him and will try to comfort a distressed friend in his own special way.

At nine months-old, Kiaan’s parents began to see milestones being missed and brought him to United Cerebral Palsy of Orange County. One of the first services they used was Moira’s Let’s Grow class. Let’s Grow is a developmental play group for parents and their infants/toddlers (birth to 36 months). The class works on helping children reach their developmental milestones, foster growth and socialization skills, while educating parents. Kiaan also comes for occupational therapy, physical therapy and now speech therapy at UCP-OC.

Kiaan’s Occupational Therapist, Jane, incorporated sensory/tactile play with various textured toys as well as bean and rice bins to address Kiaan’s tactile defensiveness and textural aversions.  Feeding was a challenge for Kiaan and during sessions, Jane slowly introduced different food textures to encourage interaction with foods and eventually eating those foods without aversions.  Kiaan made good progress and at the age of 2 and a half, Kiaan was able to join his parents at the dinner table and eat table foods, just like his parents!

Currently, his speech therapists are working on introducing new sounds and words to his vocabulary. Neha is anxiously awaiting him to learn the coveted  word “mommy.” A word we hope he learns soon!

Family with KiaanNeha knows that Kiaan is working hard to meet developmental goals with the therapists at UCP-OC, giving their family a sense of normalcy.

“UCP-OC is our security blanket. The therapists jump at our concerns and make sure Kiaan is progressing like he should. Kiaan doesn’t know he is working, it is all play time with his friends to him. We very grateful and blessed that we can bring our son to UCP-OC. The journey is easier and doesn’t feel like we are on a roller coaster of emotions every day.” –Neha

A VERY Happy Third Birthday to our friend Kiaan! 

Neha and Jesse are one of our many grateful families that have given back to UCP-OC in many different ways. Neha has joined one of our guilds raising funds, spreading awareness and running the silent auction at the Life Without Limits Gala. We thank Neha & Jesse for their continued support and donations over the years in gratitude for the role UCP-OC has played in their lives.

If you would like to make a gift to support the services that are helping Kiaan and his family, please click here or contact Elizabeth Eckman at eeckman@ucp-oc.org  for more information.

Written by: Elizabeth Eckman

Child of the Month: June 2013

June 2013: Knightly

Knightly Spring AppealAfter three years of desperately trying to start their family, David and Drexelle learned that they were going to have a baby. “We created a hope for the future and an image of what our children would look like and two days after our son was born it felt as if those were stolen from us” David recalls.

“The nurse picked up our baby, turning him over like a ragdoll, and pinpointed everything on his body that looked like Down syndrome.”

Left with a diagnosis and anxious for a place to go, Regional Center guided the Park family to United Cerebral Palsy of Orange County (UCP-OC) for in-home early intervention services when Knightly was only 1 month-old. Ana Reyes, UCP-OC’s early intervention specialist, entered the Park’s home and started working with Knightly immediately.

The first years of a child’s life are critical to their development. For a child with special needs early intervention is the main line of defense to remain on the track with their developmental goals. In-home services allow UCP-OC to work on Knightly’s goals in his natural environment using tools at the family’s disposal to stimulate the different areas of global development such as fine and gross motor skills, sensory and tactile stimulation and cognitive development.

For Drexelle, Ana Reyes has not just been a specialist for her child, but has helped her through the grieving process. “I look at her and I am inspired. She sits and listens, and is truly an inspiration. She gives me confidence as a mother that I can do this. Most of all, she loves Knightly and that is a gift, especially in the beginning when we were worried if people would love our son. We mourned for what we thought our child was and now we experience what he really is and how beautiful he is.”

With Ana’s dedication, early intervention and the resources UCP-OC provided the Parks, at 9 months Knightly is now on target to meet all his developmental goals and is learning to crawl. UCP-OC is monitoring his development; and remains vigilant and aware of what services he will need to continue thriving.Park Family 2

“We are giving back to UCP-OC this spring in gratitude for all Ana and the organization have provided our family. With help from UCP-OC, Knightly can fight to have a great life, a Life Without Limits.”
–Drexelle & David Park

In-home therapy is a cornerstone of UCP-OC’s robust 60 year history in Orange County. This service enables UCP-OC to reach families who are unable to leave their home either due to lack of transportation or medical frailty of the child. Of the 4,000 families UCP-OC impacts, 20% of our therapy families receive services in-home. Many of whom are low-income families. Funding for early intervention services continues to be cut and your support is needed to guarantee these families are served.

Your gift will help inspire a mother and father and assist a child in fighting for a Life Without Limits.

By sending in your gift or going online to www.ucp-oc.org/give, you can help build a child’s future.

Thank you for making a difference in the life of a child.

Knightly email signature

Child of the Month: April 2013

April 2013: Spencer

Spencer 1  Spencer has been a constant smile at UCP-OC for almost 4 years now. He is a happy, friendly, fun-loving  child who loves to be around adults and peers.  Spencer has a special fascination with airplanes and tunnels; which is good for his yearly trips to France where his mother is from. In the home, Spencer is exposed to both French and English and is learning to communicate in a dual-language environment. Over the years he has been seen by different disciplines at UCP-OC, but today he is here solely for speech therapy.  Through his speech therapy we at UCP-OC have learned that he is a very social boy, even obtaining the nickname of “the mayor” (a small hint towards his gregarious personality 🙂 .)

 Spencer’s first day of speech therapy was filled with huge smiles and excitement. Initially, Spencer was babbling and making sounds, but not communicating any true words such as “ball” or “swing.”  Spencer had a difficult time receptively and expressively identifying objects, and the imitation of sounds and words was challenging for him. Those who communicated with him would have to do trial and error approaches in order to guess what he wanted as it was tough to understand exactly what Spencer wanted. When we fast forward to today, he opens his arms for his speech therapist and excitedly exclaims, “Miss Jeanne!” He not only communicates to his family in French, but he also will switch languages and communicate with peers in English. Spencer can now follow multiple step directions and will spontaneously tell stories about his life to his clinicians. He will ask questions, describe events, and express his emotions.

His mother Muriel is elated that through his speech therapy, he is now becoming a more vocal part of his family and his siblings are incorporating him in their play time. He is very happy to be included! His family works at home with breaking down words and color associations, including real life applications such as, “red is stop, green is go.” Most recently his real life application involves surfing. He has started saying to others, “I surf” which definitely adds to his cool factor. His father takes him surfing with him on his board, which I am sure is a great opportunity to work on his sea life words!

Spencer has become our ultimate communicator and has made tremendous improvements in his ability to understand, process, and use both French and English. We are so happy he is at UCP-OC – he is his own speech super star!Spencer 2Spencer 3

If you would like to make a gift to support the services that are helping Spencer and his family please click here or contact Elizabeth Wylie at ewylie@ucp-oc.org for more information.

written by: Elizabeth Wylie