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.
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.
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
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:
- 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
- Like our Facebook page, follow us on Twitter and even YouTube Channel!
- 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.
Physical 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!
Jemileth & Mark Dipko
Proud Parents of Wyatt
September 2013: Aya
We 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!”
August 2013: Joshua
Becoming a parent of a preemie transformed who I am at my core. Seemingly everything was taken out of my control; my impossibly tiny child was surgically removed from me 14 weeks early. It was the first time I heard the term, “micro-preemie.” Joshua was born into this world in critical condition and remained so for months. Nothing in my motherhood bag of tricks could ever prepare me for this terrifying journey we were embarking upon.
I was finally able to see my Joshie 2 days after he was born. Every single part of Joshua was underdeveloped and fragile. At first sight, my instinct was to wrap him in my arms and protect him and yet, caressing or touching him gently would have physically hurt him. It would be 6 days before he felt the love and warmth of being held skin to skin with his mother.
When the doctors met with David & I about Joshua, we were told there was the potential for bleeding in the brain (which Joshua did develop), a hole in his heart, respiratory distress and failure, life support, being deaf and/or blind, cerebral palsy, developmental delays, autism, seizures, severe developmental delays, spending his life in a wheel chair, being ventilator dependent, with severe cerebral palsy…should he survive.
Throughout our journey, I was so proud that my son continued to fight. Joshua was fighting a battle that I couldn’t fight for him. He was fighting and I needed to be his cheerleader. I needed to advocate for him, pray for him, and support him. I needed to pump, needed to be strong, and needed, above all, to believe that he was going to come home.
Joshua spent 129 days in the NICU. During his hospital stay he was diagnosed with metabolic acidosis, respiratory distress, Patent Ductus Arteriosus, anemia, IVH grade IV & III (brain bleed), premature atrial contractions, abnormal newborn screen, apnea of prematurity, at risk for retinopathy of prematurity (ROP), hyperbilirubinemia, umbilical hernia and he had a gastrostomy tube PEG placement surgery.
Joshua is now home with his family, yet the intense need for us to do everything we can to advocate for and support our son has not wavered. Joshua’s success and development is all based now on preventative care. In collaboration with UCP and Joshua’s wonderful Child Development Specialist, Maria Montano, we feel that we are on the right track in providing our son with the best care possible. On a weekly basis, Maria provides therapy, reasurrance and positivity…all things both Joshua and I need, and because Joshua is assessed on a weekly basis, any areas of concern are brought to light and any changes noted in Joshua’s development are addressed expeditiously. Due to the amazing support system of Joshua’s family and dedicated specialists like Maria, we are finding success in helping Joshua reach his potential.
Our ship is definitely on a different course than what we ever imagined, but it has allowed us to see the world in a whole new light. I’m extremely proud of the way we have sailed our ship thus far. Most of all, I’m most proud of our Joshua. He held on tight enough even through the worst of the storm until we found our way.
To follow Joshua’s journey from his early start to his current progress, please click on this link: http://www.joshuadrake.info/
Story & experience written by Jenny Reyes (Joshua’s proud momma)
July 2013: Kiaan
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!
“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.
Written by: Elizabeth Eckman
June 2013: Knightly
After 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.
“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.
April 2013: Spencer
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!
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 email@example.com for more information.
written by: Elizabeth Wylie
From my first interaction with Melanie I could see that she has a sense of adventure that cannot be rivaled…or stifled! Melanie’s curiosity brings her into many a unique situation, but it is her ingenuity & problem solving skills that really astound me. When she has her mind-set to do something she will think of any clever way to complete that task; she is very determined. Her determination presents itself in all aspects of her life even in her consideration and love for those around her. Melanie wants those around her to know she cares and many times she shows this in her helpfulness. She likes to help out with the chores around the house, and her mother turns these situations into opportunities for therapy in home.
Melanie has global developmental delays and hypotonia (low muscle tone) which presents itself in her gait. Like so many of our families, her care is in the fore-front of everything they do. This February, her father returned from his 4th tour, a very exciting moment for Melanie and her family. When her parents discovered her delays they knew that therapy was the way to narrow the deficit. With this need for continued access to medical care, specialists and therapy, her father re-enlisted into the army to ensure Melanie got the care she needed.
Darling Melanie receives physical therapy and speech therapy at UCP-OC working on progression of age-appropriate language and motor skills. Pati , SLPA, works on language skills. She has done an astounding job facilitating 3-5 word sentences, descriptive words, transitioning from one activity to another and preparation to sit and attend in school. Beth, MPT, UCP-OC physical therapist, has been working on incorporating playtime into Melanie’s physical therapy sessions. This is due to the extensive stretching that Melanie requires in order to improve her posture and alignment. UCP-OC physical therapist Beth works on strengthening, stretching, balance, gait, body awareness and safety.
Melanie’s mother says that therapy is a family activity at home. Her brother John and sister Abigail push and encourage Melanie to meet them in the activities that they are doing. Melanie’s strong sense of purpose, spunk and determination help her get there!
Written by: Elizabeth Wylie
Ordinarily when writing the child of the month feature I meet with the family to hear their story and then I write our post. This month’s child story came directly to my inbox thanks to Ms. Pati! Kai’s father was kind enough to send me Kai’s story. Sweet Kai’s story was too touching to re-write in my own words or even shorten; he truly has a story to be told.
February 2013: Kai
“Kai was found in a cardboard box near a water tower near Jincheng City, in central China. He was raised in an orphanage with over 300 children.”
“On February 20, 2012, Kai Min was united with my wife and I. He was 2 years 10 months old. It took my wife Lisa and I two years through the International Adoption process to get to this point. We had limited information on his health history except that he was born with rectal malformation and was abandoned by his parents at one day of age.
Our story unfolds from here. Lisa and I were given basic information on his psychosocial and motor development. Kai was described as “shy and kind.” He was described to be able to speak 5 words, sit alone but unable to walk. We were told he was potty trained and no longer had any bowel issues because of a surgical repair. It was recorded that he weighed 19 lbs. and we received 4 photos of him in the orphanage. Retrospectively, he looked very sad, and small compared to his fellow orphans.
Upon our “Gottcha Day”, the day orphans are united with their forever family, we saw a pale small fragile little boy that was expressionless. He showed no attachment to the caregivers that brought him to the Civil Affairs Office where we were united. Kai now entered into a new world.
On quick inspection, Kai appeared well cared for. It was not until we spent the next several hours to days that we realized his deficits. The back of Kai’s head was flat from spending all his time on his back in a “crib.” He could not roll, or lift his head off the carpet while lying on his stomach. Kai did not crawl or scoot, he could sit up if propped up. The smallest imbalance made him fall flat on his face. In fact, he had a permanent bump on his forehead from seemly repeated falls. Kai was 100% immobile at the ripe age of almost 3 years. When spoke to in Chinese, Kai had no response. We quickly discovered he had never learned the language. Surprisingly to us, Kai knew too well his toes and would play for hours with them by himself in the hotel room. Kai was a victim of his own body. We can only believe that he was left in social isolation in a small cradle that did not even allow him to move. Nonetheless, we were terrified, mad, and lived in disbelief.
Upon Kai’s arrival to the USA, I made multiple doctors’ appointments to have him formally tested for any congenital syndromes that might have been missed or misdiagnosed. After being evaluated by 7 specialists, and denied services by the school district, it appeared that Kai’s developmental delay was due to environmental issues. My wife and I were familiar with Help Me Grow, as our daughter was born premature. Out of the persistence to get Kai help, Help Me Grow directed us to United Cerebral Palsy of Orange County. UCP-OC welcomed Kai with open arms. They were the first organization that navigated the care and therapy that was needed for Kai.
Today, Kai participates in 3 group sessions, and two individual therapies per week. Kai is blossoming into a boy that walks, runs, plays and climbs at every opportunity. He is beginning to put two words together. All these milestones in just 5 months of treatment! Kai is a new boy and no longer a victim of his own body. He has a long way to come, but nevertheless, he has been given the gift of a “Good Life” –a song my wife and I dedicated to him before meeting him.
Thank you UCP-OC for all your love and support of Kai.”
Dr. Joe & Lisa