Parents & Siblings Blog
We’d like to share other parent and sibling perspectives on children with special needs, like the posts below by our friend Cynthia Phillips, “Faith When Life Seems Unfair” and our daughter Kelly’s story, “My Sister Carla.”
If you’d like to write a guest post for our blog, please contact us at firstname.lastname@example.org.
Faith When Life Seems Unfair
Below is a guest post by Cynthia Phillips, originally published in The First Pres Times on November 13, 1994.
… a woman was there who was…bent double and quite unable to stand upright. When Jesus saw her, he called her over and said, “Woman, you are rid of your infirmity” and he laid his hands on her. And at once she straightened up, and she glorified God.
About 1984 at a Women’s Retreat, our speaker, Debbie Whaley, talked us through a spiritual exercise and asked us to think of ‘a bent woman’ we wanted to bring before Jesus in the synagogue. I thought of Kimberly, our daughter, who would have been almost 15. I closed my eyes and saw her standing before Him. The two of them were talking together. I could see their lips moving. After I opened my eyes, I realized that this was how God saw her, as a whole woman, walking and talking with Him. I felt God had spoken to me at that moment in a very peaceful, yet joyful and encouraging way. I experienced a wonderful gift from God, one He had chosen to give to me, one I have recalled many times.
Kimberly is our first child. She was born on Palm Sunday, March 30, 1969. It wasn’t a difficult birth, but I never heard her cry in the delivery room (Letterman General Hospital in San Francisco). It was much later that I learned there had been complications. I didn’t get to hold her until 12 hours after her birth. When she was 36 hours old, she turned blue, had seizures, and was sent to intensive care. On Wednesday, she had a critically high fever. Lots of staff, friends and family came to my bedside and offered to pray for us in the hospital chapel.
During this time, my husband, John, wasn’t with me. The Army Band, Ninth Division, had called him to the Delta in Vietnam one month before Kim was to be born. We tried unsuccessfully to get a waiver from the chaplain and through John’s physician. A part of me felt very alone, and yet another part felt everything was going to be okay. That Holy Week, I felt God’s presence surrounding us through our crises. Other new mothers on the ward heard about me and some asked me, “Weren’t you afraid your baby was going to die?” My response was, “No, it didn’t enter my mind. I’ve turned her over to God in a prayer.” From that moment in her life, I knew she was in His care. On Easter, her fever broke!
When I was finally able to take Kim home (a week later), I understood that her only problem was a seizure disorder. Because she didn’t have enough strength to suck, and she was taking Phenobarbital to control her seizures, nursing her was hopeless. Feeding her food or a bottle required a lot of patience.
Five months later, John was transferred from Vietnam to Schofield Army Base on Oahu. He asked us to join him there. Imagine seeing your firstborn child for the first time at five months old! Kim had her first Well Baby check up at age 6 months, but it wasn’t until a battery of tests were performed before she was diagnosed at 9 months with cerebral palsy. Oddly enough, I had learned about her diagnosis hours before we were to meet with her pediatrician. Medical records were centrally located and before an appointment with a doctor, a patient picked up their record, which was stapled closed, hand carried and given to the receptionist in the department the patient was being seen. I had an appointment with a Gynaecologist just hours before Kim’s appointment with her Pediatrician. It was during my GYN appointment that I noticed Kim’s records weren’t stapled shut, so I started reading. As I read through her records, there was so much I was never told. I learned for the first time that she had been given oxygen by mask for 15 minutes after she was born. At the end of the report, I read the diagnosis—possible cerebral palsy. John was able to read the report before we went together to the appointment to learn of the Pediatrician’s diagnosis. We knew nothing of the disease. A young and nervous doctor told us what he thought was news to us. We responded with the question, “What does this mean?” He told us that Kimberly will never walk, talk, or sit. She will need to be institutionalized. These were hard words to hear.
In the meantime, we were put in touch with a whole battery of resources. Of course, we read and learned as much as we could. Even though we felt alone and it was hard to be away from our families, it was a time when we were able to work together and become stronger. Looking back on that time, it was good for us.
Then, John became seriously ill with Crohn’s disease. He was in the hospital for 3 months and went down to 100 pounds. At 5’8” he was skin and bones! I went back to California and Kimberly and I stayed with John’s parents, Bill and Mildred, in Walnut Creek. With a lot of work, we were able to complete the needed paperwork to get John home.
Kim began developmental school at age 18 months, which gave us some relief from her daily care. Soon I became pregnant with our second child, Michael. Kim’s extraordinary needs had me asking myself, “How am I going to take care of her and my unborn child?” During an orthopedic visit with Kim through Crippled Children’s Services, a doctor spoke very bluntly with me. He said, “You have a façade of gaiety about you. Do you realize that the child you are carrying has more potential than Kimberly will ever have?” I reacted to his matter-of-fact statement with anger. How dare he say such a thing to someone he didn’t even know! Yet, I needed to hear what he said and accept that fact.
Kimberly was just past three years old and I was due with Michael in mid-September. It was suggested by the Director of We Care in Concord that we contact the East Bay Regional Center about respite care. I was very reluctant. There was no way my kid was going to be institutionalized. I felt I could take care of her better than anyone else. No one knew her the way I did. Still, it was clear that we couldn’t handle the situation without some help, so we finally decided to place Kim in respite care, but only for 30 days.
It turned out to be a good decision. John had to have emergency surgery just one week before Michael was born. It was such a blessing to know Kimberly was being cared for. Mildred took charge and kept me off my feet the last week of my pregnancy. We begged the doctor to let John come home. He came home on a Friday and Michael was born Sunday. John was there for the big event!
I was excited about Michael, but experienced post partum depression, because I missed Kim so much and we were not allowed to see her. When we finally saw her again, Michael was 6 weeks old. It was a special moment. Looking back on that time, I realize that God was working on me. I struggled with wanting to take care of Kimberly myself. Like Abraham and Sarah in the Bible, they decided to “take things into their own hands.” I felt I could manage on my own. John and I weren’t attending church, and I think God was reaching out and calling us back to Him.
Kimberly remained in a large care facility in South San Francisco until she was 8; then we were able to find a residential care home in Napa where she stayed until she was 13. She lives in Vallejo now in a residential home with Milestones of Development, Inc., which was called Jody and His Friends. Kim has always been a happy person, very aware of her social environment. She loves people and has always been well cared for by very special and loving people. The care she gets is better than we could ever have provided for her. Quite recently, Kimberly had a CAT Scan. That test showed extensive damage to the brain stem, so that there is a 15-second delay between the brain’s message and the response of her muscles. You can imagine the patience anyone working with her must need. I am so thankful to everyone who has cared for Kimberly.
Sometimes life doesn’t seem fair and it’s hard to accept things that we can’t control. I never felt the need to blame anyone. What good would that have done? John and I had to come to the realization that Kim needed care that we could not possibly give her, and that we had to ‘let go.’ There were other people involved who had to be considered. It hasn’t been easy, but it was for the best. As time heals, we feel more at peace about having made the right decision.
There are two things John and I wish. Because Kimberly doesn’t talk, we have never known her thoughts. She has such a sense of humor and her face is so expressive. I would love to hear what she has to say. John regrets never having had her arms around him, giving him a big squeeze, and hearing her say, “I love you, Dad!” Our hope is that God will show us someday.
My Sister Carla
Guest post by Kelly Mirabella Jeans, Carla Mirabella’s younger sister.
My sister Carla was born with Down syndrome, and spent much of her time struggling to learn life skills that many of us take for granted. Yes, this was a big part of her life, but even at an early age, this struggle never really got in the way of our relationship. She was my playmate and my partner in crime when our parents dragged us to their adult events. We were kids who played Barbies for hours, and we shared a love for music. She had a Fisher-Price record player in her room where we would listen to Barbara Mandrel, Michael Jackson, and Neil Diamond for hours. She was definitely the performer and would put on a show at the drop of a hat, which brought joy to any spectator.
It’s true, our lives took very different paths. Our schools were different, and our friends were different, but our parents worked hard to find recreational activities we could participate in together, such as swimming, Girl Scouts, and the church youth group. From my point of view, life was normal.
My sister had her challenges, but she had a strong support system around her, giving her as many opportunities as possible. When she moved out of our parents’ house to live her life, it was one of the happiest moments for the whole family. She had made it! She had the confidence and skills she needed to be her own independent person. Being on her own, she knew how important it was to share both the major events and the small ones. When I moved away, she called frequently, keeping me up-to-date on her life. We could never be too far away if we stayed connected, as sisters do.
Since her passing, I find myself thinking, “Boy, Carla would have loved this!” and wish I could call to fill her in. She loved life, and she loved her family, and we loved her. She was, and always will be, my big sister.
Individual Education Plan (IEP)
We are almost at the end of Disability Awareness Month (October). So, we would like to talk about a key legal right of special needs children in school, the Individual Education Plan, or IEP.
Does your special needs student (birth to 22 years old) have an IEP?
What is an IEP?
Here is an article that gives an overview of what an IEP involves. It also explains how to obtain an IEP from a school district.
In the 1980’s, the Disability Rights Education & Defense Fund (DREDF) lawyers assisted us in supporting our Carla’s IEPs. This meant Carla could mainstream into a traditional Kindergarten. Fortunately, both the teachers and administrators were helpful and encouraging.
As Carla progressed through her schooling, it was clear that her learning disabilities were being addressed. We could see she was learning to read and write. She also had access to speech therapy for which the Oakland Children’s Hospital was a resource to help guide the teaching staff. Then, during junior high school and high school, Carla focused on life skills. When she graduated from high school in 1993, Carla was selected to represent her special needs schoolmates as one of the speakers at her graduation. Next she continued on to Contra Costa Community College where she focused on the culinary arts.
Carla’s IEP fostered inclusion and life skills to prepare her to live independently in Napa for 14 years. And so, she paid her $400 a month rent and went to work every day. Both the Napa Regional Center and Community Connections Supported Living Services supported her Individual Service Plan, a program similar to an IEP.
How Audiobooks Support IEPs & Personalized Learning
“Audiobooks are for everyone. But for students with mental, physical, behavioral and emotional disabilities, audiobooks engage them in new and essential ways.”
For more detail, read the case study done by Rakuten Over Drive Education.
Let us know if this information was helpful, or if you have any comments or questions. In the future, we will bring you other tips and information to increase Awareness, Advocacy, and Action for special needs children.