A Mother’s Reflection on UCP-OC

In a class assignment, one of our parents was asked to describe how parents of children “go through” the stages of grief. After sharing her heartfelt and emotional answer on how she views UCP-OC, we were left speechless and eager to share with our families. We hope you enjoy it and can connect with her feelings. Please leave a comment to share with Adriana!

 I have four daughters. My two oldest have ADHD and my youngest child was diagnosed with Cerebral Palsy. Reading each stage reminded me of the day that I was told of my youngest having Cerebral Palsy. For me it didn’t feel like stages were the best word to describe the emotions it was more like waves. When the doctor first told me it felt like I was standing on the beach seeing this giant tsunami coming right towards me. I looked to the side and saw my three oldest Alyna daughters playing in the sand with their dad making sand castles. I have my baby in my arms and start to run as fast as I can away from the tsunami (shock, denial).  I run towards my family, I saw a little canoe with some life jackets and yell at them to get the jackets on…the same time praying that the wave doesn’t kill us.(fear, anxiety) The wave hit and knocked me down and I couldn’t breath.(depressed, stressed, guilt, hopelessness) I felt like I was drowning, I was kicking and trying to swim to keep my head above water. I had no more strength to keep swimming and I couldn’t breathe. Right before I start to sink God sends a lifeguard. The life guard puts you on his lifeboat and takes you back to shore, talks to you,  gives you techniques you will need, and shows you where to find some answers. You look up and see your baby’s face. It looks like the sun setting on the beach; that moment when the sun hits the water and it’s the most beautiful sight ever. You know that you are going to have to face the ocean of waves again but this time you do research and use all the resource available such as therapy for the baby, support group for the family, online classes etc. You turn around and there it is again, the Tsunami building strength, but the difference is you don’t have a canoe or life jackets, instead you build a submarine. You help your family in and right before you shut the lid to this steel, strong submarine you look straight at the wave and think BRING IT!

 

                                                        –Written By Adriana, mother of Alyna

Please click here to find out how you can make an impact on children like Alyna and mothers like Adriana!

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Life’s a Journey With CP and Me: National Siblings Day

katyfd-225x300Hi All,

I hope you are all enjoying your week so far, in commemoration of National Sibling Day (earlier this week) I am going to talk about having siblings and what that means to me and CP. I have an identical twin sister, Sara, an older brother, Matt, and a younger sister, Daisy. None of whom have CP—but all of whom fully understand what growing up with CP has been like, just from an outer perspective!

I truly believe that my upbringing as a child has allowed me to be who I am today. With the help of my sibling, my confidence went unshaken, and my fear of judgment drifted away. With the help of my siblings, I was happy and my dream of normalcy came true. However, as children, none of us really knew what CP was. We were too busy playing at our neighborhood park or teaching each other how to ride a bike so we could all keep up with the other kids. I didn’t learn how to ride a bike almost three years later than my twin! But at the time, we all just accepted the fact that “Katy just takes longer to do things with her legs.” It was never something I mentally let slow me down, because my siblings never treated me any differently. As far as I remember they knew that I was slower and less coordinated, but it was just a fact and nothing beyond that at the time. I am so grateful for that, in hindsight. Even up into high school, my siblings and I always did things together and my CP was never an issue that separated me, from them. Whether it was playing soccer or just hanging out and riding our bikes to the beach—I did everything just the same, but at a different pace and that was easily understood by all. I am lucky that my family and I are so close that we have been able to grow up with this special bond, and I think that my CP has made us closer, in a way. Sara and my brother, Matt always looked out for me; they were my “protectors” at school and when we were running around being kids. 

In an interview with a UCI college student, Irene Sanchez, Sara remembers: “When I think about growing up with my sister Katy, I think back to us always being together and riding our bikes to school or finding each other when we were apart because I always felt the need to be with her and to make sure she was ok.”

I always felt that, and still do. Whenever we cross a street Sara still makes sure I am beside her, just like she did when we were little on the school bus every morning! I remember one time, my brother Matt saved me from falling off the side of a moving escalator! Whenever we went on family hikes he always stayed behind me in case he had to grab my arm, as I often stumbled around on the loose gravel. I always felt that Daisy is patient with my CP and she understands how it effects me, both physically and emotionally. It is that kind of understanding and protection that I have been blessed with, and the fact that I never had to ask for it makes me all the more thankful for my amazing siblings. To this day, Sara, Matt, Daisy, and I remain the best of friends and we will always be loyal to one another as we continue to grow up and create our separate lives. Needless to say we all love each other very much and are all a part of one another in so many ways.  That is what my siblings mean to me and my CP as I have grown from a small child into the person I am today!

Katy siblings

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