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Marisol O’Brien was a student in our I.D.E.A.L. Program in Burlington for the past 3 years. I wanted to share with you the article that was in the Boston Globe on December 23, 2008. The LABBB collaborative, especially the staff in our IDEAL Program, appreciate all the support we have received from the Francis Wyman Elementary school community.
‘She smiled right until the end’
Lexington family mourns life of a special 8-year-old
As if she knew her time alive would be too brief, Marisol Liliana O’Brien seemed to keep her eyes open day and night.
“From the very first night, she would not sleep,” said her father, Thomas O’Brien of Lexington, who first held Marisol eight years ago in a hotel in Guatemala, when his adoptive daughter was 7 months old. “She didn’t want to close her eyes and miss anything, I think. There I was alone in this hotel room with her – I didn’t even have a crib. So I put her on the bed next to me. We had a great time, and for the next three days we walked through the streets. Guatemala City is filled with wonderful people, filled with good will.”
So, too, was Marisol, despite spending most of her life afflicted by a form of leukodystrophy, a degenerative disorder that affects the tissue that controls how signals are sent throughout the brain.
Nevertheless, her smile turned strangers into friends, even as her illness brought family members closer to their faith and tightened the bonds of a community.
Marisol was 8 when she died Saturday in her Lexington home, her family gathered around.
“The last thing she did was that she smiled and mouthed the words, ‘I love you’ to us,” her father said. “She smiled right until the end.”
Her smile, joyful and inviting, breathed warmth into encounters often fraught with silence.
“She had an ability to reach out to people,” her father said. “At the beginning of her disease, we were in and out of hospitals. We would be on an elevator, the door would open, and a serious doctor would step in. Marisol would look up and say, ‘hey’ or ‘hi’ until the person turned and looked. And she would ask, ‘Where’s your mama?’ Then Marisol would point to my wife, Patricia, and say, ‘This is my mama,’ and she would completely disarm any doctor, any professional.”
Dr. Pat O’Malley, head of the pediatric palliative care team at Massachusetts General Hospital, called her “a remarkable young lady.”
“I think she was very well loved by all of her providers,” she said. “I only knew her from the time when she was not able to speak and not able to walk, but even then she drew people around her and was such an affectionate and warm-hearted little girl.”
Before the doctors, tests, and painful decline in Marisol’s health, the O’Brien family felt close to perfect, her father said, and she was the presence who completed the picture.
Thomas O’Brien, a former director of the Boston Redevelopment Authority, and his wife, the former Patricia Joyce, adopted all four of their children: first Lucas from Colombia; then Nina from Guatemala; and Tomas from Ecuador. A trip to adopt Marisol meant traveling familiar ground.
“We had eight or nine trips in total to build our family,” Thomas O’Brien said. “God has been good to us. Our whole journey with all of our children has been a wonderful blessing.”
With three young children at home, he went alone to Guatemala City to bring home Marisol, and “next thing I knew, the people from the adoption agency brought this little girl to me, and she was beautiful,” he said. “A foster family had cared for her for her first seven months, and her foster mother had outfitted Marisol with two little earrings.”
When he arrived at Logan International Airport with Marisol eight years ago this month, “the kids were so excited, each of them hugging her and holding her,” he said.
“She loved to dance and sing,” he said. “We had four children under the age of 5, and I have this vision of all four of them strapped in their child seats as we drove, and Marisol was in the middle. The music was on and Aretha Franklin was singing, ‘I Say a Little Prayer for You,’ and Marisol would say, ‘louder, Daddy, louder.’ And then she’d say, ‘again.’ ”
The dancing began to slow before she turned 3, when she starting having trouble walking. Many doctor visits later, she was diagnosed with leukodystrophy, a disorder her father called cruel. Physical abilities disappear, replaced on some nights by seizures and muscle spasms.
“My wife, in six years, literally has not slept through the night one single time,” he said. “My wife is an amazing person. I am so fortunate to have a wife who is so strong in her love for our family and her love for our faith.”
“We could not bear this, we could not make it through this journey, if it were not for three things,” he added. “One is our faith, the second is our family, and the last is a group of friends. They were unbelievable. If we had emergencies and an ambulance had to come at 3 a.m., we knew we had friends we could count on to come and watch our kids if we had to go to the hospital.”
Marisol, he said, brought the O’Briens closer to their spiritual family at Sacred Heart Church in Lexington, where a funeral Mass will be said tomorrow at 10 a.m. Parishioners sometimes held 24-hour prayer services, staying up with the family.
“I think when you face this kind of a journey, you understand that there is a spiritual aspect of our lives that has to be central,” he said. “For us, it’s our faith. We’re Catholics, so for us particularly now, when we prepare to celebrate the birth of Jesus on Christmas, this is a wonderful time for us to celebrate the life of a child who simply loved others.”
O’Malley said her time at the hospital with Marisol brought to mind a poem by the late Raymond Carver, who wrote that he got what he wanted in life, “to feel myself beloved on the earth.”
“That just sums up Marisol to me,” she said. “I think I will remember her whenever I see that poem. She was really graced with love by her family and friends and providers, and we were all graced by her.”
Along with her parents, two brothers, and sister, Marisol leaves her grandparents, Gerald Joyce of Milton, and John and Anne O’Brien of Harwich.
“Marisol was a beautiful child who had a simple approach to life,” her father said. “She would look at everyone – medical professionals, her brothers, her sister, her parents – every day and say, ‘I love you.’ “
Welcome to the LABBB Primary Development Program! Our classroom is designed for kindergarten through grade two learners with autism spectrum disorders as well as for those learners who can benefit from the program’s instructional approaches and environment. The program has a high teacher-to-student ratio (currently, four core staff and six learners), with ongoing speech/language, occupational, and physical therapy services delivered by LABBB therapists. Additional support, both direct and consultative, is provided by a LABBB behaviorist and a LABBB reading specialist. Based in the Memorial Elementary School in the K-2 wing, our learners also have daily opportunities to participate in activities with their grade-level peers.
The primary development program addresses: speech and language development (including social and pragmatic communication); academic skill-building to access the general curriculum (based on the Massachusetts Frameworks); functional skill building that includes gross and fine motor development as well as adaptive skills for application at school, home, and in the larger community; and sensory regulation. Our learners tend to have relatively strong visual and kinesthetic learning styles. Keeping our learners’ needs, styles, and relative strengths in mind, we take a multi-faceted approach to learning, which includes:
- Highly individualized instructional programs based on the principles of applied behavior analysis (ABA). We employ aspects of evidence-based ABA methodologies, which at this time includes Verbal Behavior and TEAACH.
From L to R: Jo-Ellen Percival, O.T Assistant, Linda Bartlett, Classroom Aide, Roberta Klix, Teacher, Vickie McIsaac, Classroom Aide, Jane McGrath, O.T, Jessica Kort, P.T, Joann Warino, Classroom Aide, Mary D’Addario, Speech
- Pervasive use of visual cues and multi-modal communication tools, such as individual schedules, topic boards, social stories, play scripts, and static and dynamic display devices.
- “Hands on” individual and small group learning opportunities to acquire new skills with ongoing generalization of those skills in the general education classroom as well as larger school and community environments.
- Incorporation of a sensory diet into the daily curriculum.
- To the extent possible, direct and incidental instruction in natural settings, for example, learning playground skills (both social and gross motor) in the playground at recess alongside peers.
We believe that our learners are active, equal members of the school community and we strive to ensure that they are included in the general education classroom and school-wide events as much as they are comfortable and able. For some of our current learners, this mean daily participation in English language arts centers and “specials” (e.g., art, gym, and music) and for others, attending morning meeting and having snack, lunch, and recess with their peers. In the future, we hope to add a book buddies and “game day” to promote additional opportunities for social interaction.
The LABBB Primary Development program embraces a collaborative, team approach, that includes not only core staff, but also our learners’ parents and families, Memorial School staff, and LABBB administrators and support staff.
This is my first attempt at blogging and my vision is that this will serve as an ongoing information and communication resource for all LABBB staff, Parents and Students. I will invite others to write articles, share resources and participate in opening the world of LABBB. As a collaborative this will be especially useful because our educational programs and Worksites are located in many different districts. In fact, our staff are working in 12 buildings and over 15 worksites. Technology is the way of the future and we must use it to our fullest potential. This has been a goal that I have been trying to implement. Our world is changing and using on-line tools and services for productivity and knowledge will most definitely be a best practice in the future.
Our organization has used little in the way of technology and my plan is to change that. I remember purchasing our first on-line IEP program about four years ago and I thought this was one of the most significant advances that we have made at that time. We were confident that this would make writing I.E.P’s significantly easier to manage. How did we write IEP’s before? What about progress reports? I am sure many of you remember the archaic computer based programs we all used. We need to continue to promote tools that will make our paperwork more organized and user friendly.
As of September 2008 we finally have staff e-mails via FirstClass. Furthermore, we are currently being trained to implement a student database called IMG that will handle all students, staff and Health information. We anticipate that this will be fully functioning in September 2009.
If we are going to teach our students how to function in the world in the next 5 to 10 years, we must utilize the current technology that will be necessary to get along. Whether we use on-line banking, Linux, Google, Cloud, Staroffice or any of the applications that are free or at a significantly lower cost, we can not ignore the impact they will have on our world.
I will be contacting all the LABBB classrooms and worksite to put up blog. If you are interested in putting something up on the blog, feel free to contact me about this. I am looking for creative ideas.
Using Technology is fun, and can enhance communication. Enjoy our LABBB Blog!