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Spring 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By George and Christine Givens, Parents, Spring, TX

Abstract: Parents share their keynote presentation from the 2009 Texas Symposium on Deafblindness, about their family's journey in finding purpose, satisfaction, and joy with and for their daughter who is deafblind.

Keywords: Family Wisdom, deafblind, in-home therapy, community, Texas Symposium on Deafblindness

Christine: We're here today to talk about our daughter, Skye Marie Givens and that's actually one of our favorite topics. Skye is deafblind, speech impaired, motor impaired and has cerebral palsy. She is fed through a g-tube and does not walk...yet. Our presentation is titled Reaching for Skye as we have struggled almost her whole life on how to communicate and effectively teach Skye about the world around her. And, how Skye can tell us what she wants. We want her to experience a life full of joy, have a purpose, and be able to participate in her life. Our desires are no different than most any other parent-with the exception of how do we reach our deafblind daughter?

There's so much we could talk about, but we've been asked to focus more of our talk on the therapies that are done at home and the significance of them. Before we get into that, we'd like to share some background on our daughter; because when you have an understanding of where she started, then you have a greater appreciation of how far she has already come.

George: In the summer of 1997, Christine and I had been married for 7 months and we were on a business/vacation trip in the UK. My ancestry is Scottish and I lived and worked in Scotland for several years earlier in my career, so I was very excited that Christine was able to come with me. We landed in London and checked into a hotel across from Kensington Palace. We woke that following Sunday morning and looked out the hotel window to large crowds of people flowing onto the grounds of Kensington Palace and carrying flowers. Turning on the TV, we heard news that Princess Diana had been killed in a car crash hours earlier that morning in France. We left London for Glasgow, Scotland, and drove across to Edinburg and up the east coast to Aberdeen for business. After finishing in Aberdeen, we drove across the Scottish highlands and headed for Balmoral Castle, summer home for the royal family. Near Balmoral Castle, officials motioned us and several other cars off to the side of the road as the Queen and her family passed by on their way to the local church to attend the family memorial service for Princess Diana. It was a moment that left quite an impression.

A little later, we continued our drive and arrived at Loch Ness-maybe in hopes of getting a glimpse of the Loch Ness Monster. Having no luck seeing Nessy, we continued our journey to the west coast and on to a quaint little island to stay the night at a B&B. We were on the Isle of Skye. This is a very tranquil part of the world. One lane roads with occasional wider sections to allow for the almost never occurrence of an oncoming car. It is home to ancestral beginnings for several of the Scottish clans.

You're probably wondering what this has to do with the topic of deaf blindness, or being parents of or about caring for someone who is deaf blind. For us, this trip was the beginning of a much longer and still ongoing journey. About 24 weeks later our daughter, whom we named after the Isle of Skye, was born. She arrived 4 months premature, and on the day before our first wedding anniversary. Like the Isle of Skye, she was very tiny, tranquil, primitive but would prove, at 1 lb 6 oz, to be a fighter, even though the odds were stacked against her. She spent 5 ½ months in the NIC Unit (Neonatal Intensive Care Unit) at Texas Children's Hospital and every day for the first several weeks, Doctors did not expect Skye to live to the next day. She suffered a bilateral brain bleed which destroyed portions of her brain, along with her auditory pathway. She survived heart surgery, countless infections, and detrimental side effects from drugs that kept her alive, but seriously affected her senses. Skye developed Retinopathy of Prematurity (ROP) which caused her retinas to detach in both eyes. The retinas were reattached and sclera buckles were placed around the eyes to aid in keeping the retinas partially attached. In July of 1998 we finally brought Skye and her entourage of oxygen, monitors, and medical equipment home. Our daughter was deafblind, speech impaired, motor impaired, and had cerebral palsy. Throughout this part of our journey, the road ahead seemed very dark and uncertain-no cars in sight, no map to guide us, and unknowing where we were headed.

Our primary goal for Skye during the first several years was mostly centered around survival. An extremely weak immune system susceptible to the RSV virus, pneumonia, and aspiration were just a few of our major concerns. The doctors advised us not to take Skye out of the home unless it was for doctor visits or medical emergencies.

We had been advised by prominent vision specialists at both of the major children's hospitals in Houston that Skye had no vision and no probability of vision due to the ROP. Determined to do all that we could so that Skye would not live her life in total darkness, we set out to find an expert in ROP. This lead us to meeting Dr. Michael Trese in Royal Oak, Michigan. His life long commitment to children with ROP and ongoing participation in research put him on the cutting edge of ROP technology. After several delicate surgeries, Skye began to distinguish light and dark out of the lower quadrant of her right eye and has been able to maintain and use that ability. We traveled to Michigan twice a year for the first 3 years and once a year thereafter for follow-up visits. It has become our annual vacation road trip, allowing us to visit close family members in Ohio, Kentucky, Alabama and Mississippi, that otherwise might not have happened.

Christine: When Skye was 7½ years old, many changes came to the family. Skye became a big sister on August 16, 2005, when we traveled to China to finalize the adoption of Leili Gayle. There are no words to describe the joy and satisfaction that we have with our two daughters. They get along great together, and Leili has a basic understanding that Skye has disabilities and we just need to do things differently with her. Leili is very accepting of the differences and very loving to her big sister. On occasion, you'll even see her trying to feed her baby doll as though she has a G-tube just like Skye's.

George: We have struggled for years on how do we actually communicate with Skye. How do we reach her and how can she reach back to us? For most of her 10 years, we have relied on her sounds, yells, and screams, trying to decipher what she wanted, what she needed, what could possibly be wrong, and many times we asked God, Just give us a clue.

For too long we were going down a path that seemed to go nowhere. We had been depending on the school system for guidance. As time went along, it became more apparent to us that the education methods being used with Skye were not consistent with those of the deafblind professionals. Two years ago, TSBVI Deafblind Outreach was invited to her school to evaluate Skye and make recommendations. They provided a comprehensive report which the school district has been slowly implementing. This school year a paraprofessional intervener in training was assigned to work with Skye in the classroom.

Christine: After waiting approximately 7 years, Skye finally made it into the CLASS program. This is a Medicaid waiver program for children with disabilities. It was a huge blessing and a true turning point in Skye's life-truly JOY to the 100th degree. The most significant impact to our family and especially to Skye was that CLASS provided a portfolio of specialized therapies, and Medicaid opened the door to the traditional OT, PT and Speech services. The therapists have reached out for Skye and to us as a family because they genuinely care and see the potential in her. They are willing to commit to goals that challenge her and are determined to be successful. They have not been limited in their thinking; to this day, if something is not working, we study the issue, back-up, and try another tactic. All the therapists are aware of how Skye is progressing with the other therapies and are eager to help each other when issues arise.

Music Therapy started approximately 2 ½ years ago. In the beginning we didn't know what to expect from this therapy, but Skye enjoys music so we had hopes that she would be responsive. And she was. Skye went from reaching with limited movement of her right hand and no reaching or movement of her left hand to strumming a guitar with both her right and left hands. Using music interaction as an enticement, Skye can hold an object in each of her hands for several minutes; she can gently beat a drum with a stick and she's learning to move just her fingers to explore a keyboard. Our first Music Therapist began signing yes, no and music with Skye about 2 years ago. It took perseverance and lots of patience to allow Skye to process, but Skye started to sign.

George and I attended a Barbara Miles seminar and I still remember her talking about the need to give our kids language in many different mediums. We felt like we needed to immerse Skye in sign language because we saw the potential in her being able to communicate back to us, since she was now signing three words.

Kristen Shultz (Recreational Therapist) is the driving force for signing and other activities. She is knowledgeable in many of the therapy disciplines and has a vast understanding of muscle patterns. She can almost immediately identify what is hindering Skye from progressing. Kristin has literally opened Skye's world with Recreational Therapy. Because we are beginning to have a mode of communication and we can now give Skye information about what we are about to do, we've been able to reduce her stress level and we've actually been able to ride the train at the zoo, have lunch on Sundays as a family at a local Mexican Restaurant, explore Wal-Mart, meet Governor Rick Perry at the State Capital in Austin, plan shopping trips to the mall, and attend the prom that was hosted by our church with her dear friend Travis Dafft, who is also deafblind. You can read all about their wonderful evening in last fall's issue of TX SenseAbilities.

Kristen is also our Aquatic Therapist. Two years ago when she put Skye in the pool, she was lifeless and very weak. She now she kicks her legs, plays games and works on strengthening muscles that she probably never knew she had. The water provides an environment in which Skye is totally free of all braces and she can move as freely as she wants.

OT services just started in June and Della Copper has already made a drastic change in Skye's life. Initially the goals were set to strengthen arms so that Skye could learn to bring a spoon to her mouth. Skye was resistant and appeared confused. Della worked with Kristen to develop a signing routine to take Skye back to the beginning of, what is a spoon? What do we do with the spoon? Della just started this new routine the week of Christmas and Skye is already showing signs of understanding the steps of the new routine.

Mary Knight (Speech Therapist) has over twenty years of experience (including signing experience) that she brings to the table-literally. Skye is now exploring Cheetos Cheese Puffs, Lorna Doone Shortbread Cookies, and Ritz Crackers along with the usual applesauce and yogurt. Her goal is to get Skye to the point that she can safely eat these finger foods, and then our OT will be able to teach Skye to bring the finger foods to her mouth.

Kerry McGuire (PTA) has accomplished great things with Skye during this past year. She has worked with Skye to stand up from a sitting position with little assistance. She has also worked with Skye in a gait trainer to take steps with assistance. Upcoming plans are to work with Skye in a Spider Cage, which is an intensive therapy to isolate and strengthen the weaker muscles due to her CP. This is a therapy originally developed for Russian cosmonauts who have spent extended periods of time in an anti-gravity environment. We hope that this will help to strengthen Skye and progress her further in the gait trainer and all other movements.

Skye also receives 2 massages a week to help with the muscle tone issues related to CP. Silahis Loyola is her masseuse.

These therapies would not have been possible or as effective without assistance from the CLASS program and Pros Home Health Care. We are grateful for the program and the dedication of the therapy team.

George: We enjoy being able to take Skye to church. That is something that we were not able to do as a family for many years. We are fortunate to be part of a church which has an ongoing mission in the community to serve people with disabilities and their families. Our church is The Woodlands United Methodist Church, located north of Houston. It is a large church with an impressive special needs program serving more than 150 kids and their families.

In the beginning our journey seemed dark with no direction or understanding of what it takes to reach out to Skye. Today, she is beginning to communicate and participate in her life. Skye has worked hard to get to where she is, and so have many other people for which we are very appreciative. Tomorrow is Valentines day. It is also Skye's birthday; she will be 11 years old and is our Valentine. The day after tomorrow is our 12th year wedding anniversary. So, our journey continues. Thanks for listening.